The Mighty Max Fan Club

Hello followers

2011-12-22T11:34:00.000-05:00

Thank you to all of you who periodically check in on our blog. I apologize for not updating since Cora was born. Life with two kids is a lot crazier than I was expecting :)

Here's a little recap of our life over the past 2.5 months:

Max is doing very well. He still loves school and is making a lot of progress. Unfortunately, he has been sick for most the winter season so far. He ends an antibiotic and is back on one a few weeks later. We are dealing with some pretty nasty mouth sores right now. His pediatrician originally said they were canker sores, but they are spreading so I am not to sure if that's what we're dealing with or not. I am actually waiting for a call from nephrology as I type this. The poor guy is in a lot of pain though, so I am hoping to get something figured out before Christmas so that he can enjoy his gifts from Santa.

Cora is getting big, although everyone tells us that she is tiny. According to her stats, she is only in the 15th percentile for weight and 10th percentile for height, but hey we're not big people either! She is on the charts so I'm happy. She is smiling and starting to coo now. She is definitely a mama's girl, but she does have her daddy wrapped tightly around her little finger. Max absolutely adores her. He wants to be in her face all the time and loves to make her smile. He is such a good big brother :)

We are finally getting settled into our new house and love all of the extra space that we have. We are looking forward to having the room to host our first New Years Eve party, Cora's baptism and Max's 4th birthday in the upcoming months.

Overall, life is good.

We want to wish all of our old and new followers a very Merry Christmas and heath, happiness and happy memories in the new year.

Introducing Cora Anne Livingston

2011-10-04T23:56:00.000-04:00

September 26, 2011

6 pounds 8 ounces

19.25 inches long

Absolute Perfection

Recovery Room

Going Home

4 days old

6 days old

Melt mama's heart

The very proud big brother and his "baby sister"

We welcomed our little girl into the world last week. Life is perfect. Cora is perfect. Max is the world's best big brother and melts his mama's heart at least once a day with the sweet things that he does and/or says to Cora. Like when Cora and I went with Tim to drop Max off at school on Monday so that he could show his new sister off. Oh the cuteness! He couldn't say enough about her to his friends and teachers. When someone new came up to see her he would yell, "look what we found!" When it was time for him to line up and head to his classroom he yelled, "Bye mommy! Bye daddy! Bye Baby Cora!" She is the first thing he talks about when he wakes up and he can't go night night until he tells her goodnight and gives her kisses. It's enough to make a mama tear up on a daily basis.

The time is already going way to fast and it's only been 8 days.

What a busy month!

2011-08-23T22:48:00.000-04:00

Hello Followers:

The months of July and August have been crazy busy around here!

As you all know we celebrated Max's first kidneyversary on July 8! It was neat to look back on where we were exactly a year ago that day. All of those emotions that I had the morning of the surgery came rushing back as I thought about that moment when I walked out of his hospital room not knowing what the outcome of the upcoming surgery was going to be. I had the feeling of power because I was about to save my son's life, but I also felt powerless because I was about to give up all of the control with Max's care. That is hard for a mama to do. What a day though! I barely remember anything about that day, but it is a day that we will hold close to our hearts for the rest of our lives because it was the day that Max got his second chance at life. A chance at a "normal" life.

The middle of July had us celebrating Tim's 30th Birthday! We celebrated by going to dinner and then heading back to the house to eat his favorite dessert- Country Cousin's Banana Cream Pie. The day after his birthday, I gave him the gift of going out of town for a long weekend. I joined my dad, aunts, uncles, cousins and friends at Dale Hollow Lake for a little camping trip. We typically go down there every year, but it was my first time in 4 years since we were a little preoccupied with Max and his needs. I had a great time, but I was ready to come home to my own bed by the time I came home on day 4. Being 6 months pregnant and sleeping on a cot are not a good combo, but it was a great little get away :o)

We ended July by closing on our new home. We decided not to go down the building route and found something that we love in a great neighborhood that suited our needs. We are getting settled, but it's definitely a slow process. My third trimester exhaustion hit hard right before closing so it's getting hard for me to want to unpack and organize. We're getting there- slow but sure.

August has been full of emptying boxes, painting and putting rooms together. We finally got to Miss Cora's room this past weekend, so I am starting to feel a little more prepared for her arrival- only 5 more weeks!!!

Max spent 14 days of this month feeling pretty under the weather. He had a fever for those two weeks which was not fun. He had his labs drawn 3 times and a urine test to check for UTIs. All came back looking great. So he was diagnosed with a sinus infection and put on an antibiotic. He is finally fever free and starting to feel better despite a lingering stuffy nose and cough. Now mama has one heck of a nasty cough and can't seem to get rid of it (even with an antibiotic). I really hope it leaves soon because it's making it very hard to get any sleep.

We had some not so good news come out of this month so far. Max had his bladder testing today and we unfortunately got the news that he has reflux into his transplanted kidney. What that means is that when Max's bladder is full of urine, the urine flows up into the kidney instead of coming out through the urethra. This unfortunately means that Max will not be able to have his vesicostomy closed until the reflux is resolved because it would damage the kidney and we'd be back at square one. At this point, we don't know the severity of the reflux. We will be meeting with the urologist on Monday (8/29) to discuss the results and the plan for how we fix it. The good news that we did get today was that the pressures in his bladder have decreased significantly and that his bladder is holding more than double what it was at his last test. I will keep you all posted on what the plan is once we meet with the doctor. Please pray that the reflux isn't severe and that it's easily fixable. Remember, we are hoping to avoid the bladder reconstruction, so prayers that he has made enough improvement to do so, are also greatly appreciated.

On a much happier note. We are ending this month with the start of preschool for one very excited 3 year old little boy. Max will be started his first day of preschool tomorrow afternoon. I can't believe that my little boy is old enough for school already. As hard as it's going to be for me to drop him off and leave him with people that we barely know, I know that this is something that he and I both need. He is going to have a blast and hopefully learn a lot while he is there. Sigh. What am I going to do with my free 3 hours a day for 4 days a week- at least for the next 5 week until Miss Cora makes her arrival!

Hope everyone has had a great summer!

Happy Kidneyversary Max!

2011-07-09T01:32:00.000-04:00

I have a hard time believing that we are at the one year mark since Max's kidney transplant. I still have to remind myself of the rollercoaster ride that we were on just a short year ago. Believe it or not, I barely remember life before July 8, 2010. The dialysis and endless meds seem like a lifetime ago. Fighting to keep Max alive was what got us out of bed every day. When I look back on some of my past blog posts, I have a hard time believing that that was me writing those words. I feel like I am looking into someone else's life and can't believe what that family has gone through to get their little boy to where he is today. Then I realize that that was our life. All of the surgeries, hospital stays and visits, dialysis treatments, tests, therapy sessions, blood draws, the sleepless nights and all of the tears- we lived that. Not only did we live it, but we survived it, and I am so proud of who we have become because of the journey that we chose to live. It was a journey of struggle and heartache, but it was also a journey of determination and love for one little boy. A little boy who has taught us more in his three years of life than we have learned in our 28-30 years of life.

One year ago today, July 8, 2011, Max got his second chance at life. A chance that no one believed he would get because they didn't think he would survive past a few days old. Because of the faith and determination that our medical team, family, friends and strangers had, Max got that chance. We truly believe that without the support team that we have following us down this path, we would have never gotten to where we are today. It's because of all of you and your prayers that Max is alive today. We will never be able to repay you for that, but please know that we will never forget what all of you have done for us and we will forever be grateful of your love and support.

Max's accomplishments over the course of a year:

Max went from saying 2 words (ah and dada) to speaking sentences (nonstop!)
Max went from bearing no weight at all on his feet to standing within weeks of transplant
Max went from hopping on his rearend to running
Max went from gagging on anything that came near his mouth to eating Mac-n-Cheese and carrots (we're still working diligently on this, but he has made HUGE progress!)
Max went from taking approximately 10 medications to only 4
Max has graduated from both speech and physical therapy

Those are some of his biggest accomplishments of the year, but I am sure as soon as I his "Publish Now" I will think of 12 more.

Of course I can't end this post without telling you some very good news regarding Max's kidney. The antibody that was attacking Max's kidney back in September and October of 2010 is officially GONE! Can I repeat that? The antibody that was trying to rid of Max's kidney is G-O-N-E!!!!

Can I get a WOOHOO?!?

June 2011

2011-06-22T00:18:00.000-04:00

Hello All:

Life is still good here on the Livingston front. Max is officially three which is still crazy to think about. His labs are still good and he continues to do very well both developmentally and in growth. He has gained a little bit of an attitude since his third birthday which means that his new favorite word is "NO!" Mommy and daddy are NOT very excited about it. He spends a little more time in time out these days as well. He is testing his boundaries more and more each day and mommy seems to be loosing her patience with it a little more than daddy is, but that's a three year old for you.

June has been keeping us busy so far. We started the month off with the birth of my best friends baby girl. Miss Harlow made her debut late in the evening on May 31st. She is absolutely perfect and beautiful. It's possibly the coolest thing to see your best friend become a mommy. To see the love in her eyes as she stares at her daughter is one of those moments that I will remember forever. Congratulations Rick and Allie!

My immediate family took a trip to Gatlinburg this month as well. It was so nice to be able to get away for a long weekend. We all had a great time and can't wait to get another trip in soon. This was our first weekend away since Max's transplant- it was long overdo. During this trip we were able to meet up with 3 of our transplant buddies. It was one of the coolest experiences of my life watching these four little miracles running around and playing with each other. I had met all but one of the families before this weekend, but you would've never known that we all just met less than a year ago. Something just felt right about being with this group of people. You didn't have to explain anything to anyone- they just knew. They don't judge if your child is behind the other kids his/her age- they celebrate the progress that each individual has made. We talked about gtubes, granulation tissue, PD catheters, eating/drinking issues, therapy sessions, dialysis, medications, labs and feeding pumps and no one had to ask what the other person was talking about. No one looked at you like you had three heads when you asked a question about something kidney and/or bladder related, because they all knew exactly what we had been through and will continue to go through for the rest of our lives. These are our people and it felt oh so good to be able to communicate with them face to face about every day challenges without feeling like we are the "odd" ones. I can 't wait to hang out with these wonderful families again and to see the milestones that each of our kids have made in the time that we will be apart. Those few hours that we were together was another one of those moments that I will never forget.

On June 6, we were invited by Dr. G to join him and another transplant family at the Cincinnati Reds game to surprise Dr. Ben. This was also one of those moments in life that we won't ever forget. Dr. Ben is unfortunately leaving us at the end of the month to take an attending position at CHOP (Children's Hospital of Philadelphia). As most of you know, Dr. Ben has been with Max since the beginning of his fellowship. Max was only 6 weeks old when we met Dr. Ben. Little did we know that on July 1, 2008 we would meet one of the doctors that would not only make a huge impact on our lives with his bedside manner and easy going personality, but we had just met someone who was going to have a huge part in saving our son's life. Dr. Ben never made a decision about Max's care without confronting Tim or I to ask our opinion. If we were unsure of something, Ben would be there to answer any of our questions and if he didn't know the answer he wasn't afraid to say so. If he didn't hear from us after a couple of weeks he would call or email us just to check in and make sure everything was still going well. He went out of his way to come to the dialysis unit every time Max was there for a treatment to make sure he was doing well and to see if we needed anything. He came in on his day off once because something unexpected happened to Max. Guys, these are just a handful of the things that he did for us as a fellow. Can you imagine what kind of attending he is going to be? Dr. Ben is going to be one of the best attending doctors that CHOP has ever seen. We are so devastated that we aren't going to be apart of it, but we are overjoyed that we got him for the three years of his fellowship. As heartbreaking as it is to lose a doctor like him, we wouldn't have traded the time that we have gotten with him. He got Max, Tim and I through the hardest 3 years of our lives. It's impossible to repay someone for saving your son's life. All we can do is take comfort in the fact that what Dr. Ben learned in his three years of being Max's fellow will help him in saving another child's life and that is enough to put us at peace with him leaving CCHMC. Dr. Ben- you will never be replaced and will be missed greatly. Remember that you are always welcome to come back :)

On June 20th, Tim and I signed a contract on our new home. We got word that our financing was approved and that we will be closing on July 29th. We are so very excited about our new adventure in our new home!

Enjoy the rest of your June! We will see you all again in July.

PS: For some reason I am not able to load more than one picture at a time due to computer issues. I promise to get pictures of our Gatlinburg trip and of our night at the Red's game up as soon as my computer will allow me to do so. I just didn't want to delay the update any longer :)

Happy Burpbay Max!

2011-05-13T13:05:00.000-04:00

May 12, 2008

May 12, 2011

Thanks again for all that you have done for us over the past 3 years. It's been fun :)

Sorry for not getting this up yesterday. Blogger was in read only mode while they did maintenance.

All is well

2011-05-09T21:05:00.000-04:00

What a month! I don't feel like we have stopped since March. All is going very well though. Max's labs are beautiful (knock on wood) and he has graduated from every 3 week clinic visits to every 4 weeks.

Max will be celebrating his third birthday this Thursday. With his third birthday fast approaching, lots of changes are being made. He will be graduating from the First Steps program on Tuesday which means no more therapy. He is slowly making progress with eating orally, so everyone is in agreement to let him have a break from therapy and see how he does over the summer. At this point, the ball is in Max's court. He has all of the skills he needs to take all feeds by mouth, its just a matter of when Max decides that he wants to do it. His biggest issue right now is that he is afraid to chew anything thicker than a mash potato consistency. His favorite food at this point is a fine chunky pureed mac-n-cheese. Like I said, he is making progress and its just a matter of time.

Our other big piece of news is that Max has officially been enrolled into a preschool program. He will start school this August. I am still not quite sure how I feel about this, but I know that Max needs this and that he is going to love it. I just have to learn and accept that he is growing up and that I need to give up a little of my control over his care. Everyone seems to be well aware of my concerns with germs and illnesses and they are going to work with us when it comes to flu season and other illnesses that will be floating around the classroom. Sigh. He can't be three already :(

We have been very busy this month finalizing our house plans. We are getting very close to signing a contract with All American Homes and we should break ground sometime in June. *Fingers crossed*

We are also very excited to announce that Max will have a little sister this fall. We have had two ultrasounds and everything looks great thus far. Our fluid levels are perfect and her heart, brain and bladder look good. Her kidneys were undetectable on the ultrasound which is good- this means that they are not engorged with fluid like Max's were :) We will be having a level 2 ultrasound with a perinatalogist on May 25th. This will be a full anatomy scan and will give us a much better idea on how she is doing. We are still nervous, but are confident that everything is going to be just fine. We are truly blessed and can't wait to meet her!

Life is good.

I think our new posting routine is going to be monthly. If something comes up I will definitely post to keep all of you updated, but things are going very well and we are very busy with the new house, new baby and a very busy little boy. I will definitely be posting on Thursday to talk about our big three year old :)

Have a great week everyone!

Funeral Arrangements

2011-03-29T22:13:00.000-04:00

The layout will be Thursday evening from 4-8pm at Muehlenkamp-Erschell Funeral Home in Ft. Thomas (across from St. Thomas Church).

The mass is at 10:30am at St. Mary's in Alexandria followed by the burial at St. Stephen Cemetary in Ft. Thomas.

Thanks again for all of your thoughts and prayers.

Rest in Peace

2011-03-28T23:05:00.000-04:00

A little after 11:00 this morning, Heaven gained an angel.

Rest in Peace "Pawpaw" Larry.

We love you and will miss you greatly.

*****

I will post funeral arrangements after the meeting with the funeral home tomorrow morning.

Thank you to all that prayed for his peace and comfort.

Updates and Prayers

2011-03-22T23:54:00.000-04:00

Hello to all of you who are still checking in on us. I sincerely apologize for the very long delay in updating the blog. We have had a very busy and craptastic last few weeks. We ended February with a move back into my parents house after we sold our house. That went smoothly, but moving while pregnant and with a toddler are both exhausting.

Max's labs have also sent us on a lovely roller coaster ride. We believe they are up and down due to dehydration. We are pumping him full of fluids but also trying to allow him to feel hungry so that he will start eating for us. There is a very fine line between the two and its difficult to try and keep both his kidney happy and his feeling of hunger in tact. I am beyond frustrated with the whole process. I just want my kid to eat. His problem is that he is stubborn. He doesn't want to sit down long enough to eat. He will take a few bites (on his own because he is all of a sudden Mr. Independent and doesn't want us to help) and then he fights with us because he "wans to get down an pway." He hasn't figured out how to chew anything either so he is still on a puree. Like I said, very frustrating to say the least. On the bright side, he is starting to drink a little more by mouth.

******

We are asking all of you for prayers. We are also asking that you ask all that you know to please pray. Some of you may remember that Tim's dad was diagnosed with a brain tumor three years ago. This brain tumor is now winning. Despite the couple of rounds of chemo that Larry endured 6 weeks ago, the tumor continued to grow and Larry slowly got worse. 3 weeks ago, it was decided that it was time to stop treatment and call Hospice in. In 3 short weeks Larry has gone downhill very fast. Tim came home this evening from visiting with his dad and said that he was no longer eating and could barely talk. Larry hasn't gotten out of bed since Sunday afternoon.

I will forever cherish the memories that we have with Larry. He is a great man with a huge heart. When Max was in the NICU, Larry was at his bedside a few times a week. He would always tell me who was praying for Max and all of the stories he would tell the ladies at work about his only grandchild. He is so proud to be Max's "pawpaw." You can see his face light up, even now, when Max walks in the room and shouts "PAWPAW!" Max is the light of his life.

Please pray for peace and comfort for both Larry and the entire Livingston family. Goodbyes suck, especially when it could very well be the last time you say it to someone.

The First Emails

2011-02-21T11:34:00.001-05:00

Below are the very first emails that I sent out when we found out something was wrong with Max. I hadn't started the blog yet, so I thought I would post the first set of updates that were sent out in those beginning days. I didn't edit anything so excuse the typos and the lack of knowledge :)

Sent on January 30, 2008:

Hello Everyone!

I don't know if you have heard or not, but we went for an ultrasound on Monday and found out that our little boy is having some complications. His bladder and both kidneys are engorged with urine which means that he is not producing enough amniotic fluid to help develop his lungs. So, we went for another ultrasound yesterday and they diagnosed him with Posterior Urethral Valve Syndrome. All that is causing this havoc is a flap of tissue blocking the tube in his penis to allow the urine flow which is causing it to fill his bladder and back flow into his kidneys. We go tomorrow (Thursday) for a bladder tap- they will insert a needle through my belly into his bladder to drain the fluid which they will then send for a urinalysis. On Friday I will go for an ultrasound to see if his bladder is filling back up. If it is, then we move on to the next step. If it doesn't that means that his kidneys are failing and there is nothing else that they can do to help him. Tim and I are very positive that his little kidneys are still functioning. So once we see his little bladder full of pee on Friday we go for another bladder tap on Monday. This will show whether we have full kidney function or partial (you CAN survive on less than 100% kidney function). Once this is done we will go (I am assuming sometime next week) for a bladder shunt. For this procedure they will give me an epidural and insert a device the width of a pen into my belly to place the shunt into his bladder so that it will drain into his completely dry amniotic sac. Once they do this I will have to be seen ONCE A WEEK for the remainder of the pregnancy to be sure that he hasn't pulled the shunt out or that it hasn't fallen out. If this is the case we start over with replacing the shunt. Once he is born we will then have surgery to remove that stinking flap of tissue so that he can pee on his own.

His heart and brain look great from the ultrasound. The doctor said that his chest cavity is measuring about a week behind, but she isn't too worried about this because is heart is in proportion to his chest size. We are staying positive that since is heart and heartbeat look good this may mean that the kidneys are still functioning. (We don't know if this is an accurate assumption though.)

With all of that said, we need all of the prayer that we can get. Once we know for sure that his kidneys are functioning (PLEASE GOD!) then, in our opinion, we are on our way to a healthy baby boy.

Also, Tony II and my dad DO NOT want to know what we are having so if you talk to them don't mention a baby boy!

Please keep us in your prayers that all goes well and that Baby Max is a strong fighter! We will keep you updated once we find anything out.

If you could please pass this onto anyone that I may have forgotten. I don't have Lou and Nancy's or Dianne's email address handy if someone could pass this on to them.

All of our love,

Beth, Tim and Max

Sent on February 5, 2008:

Hello All!

We have started the week out with more tests. Friday's results came back a little better than the first set and Monday's results came back a little better as well (except for the protein levels in his urine). Today (Tuesday) I was called in for another (fourth) bladder tap to see if the protein levels got worse because of the urine sitting in his bladder all weekend. We will have those results tomorrow. As of right now, Tim and I are feeling pretty hopeful that this little man may have a chance at life. We have a fetal MRI and a fetal care evaluation set up for Monday the 11th- which to us seems like a long wait to be getting this ball rolling, but it was the soonest Children's could get us in. The MRI's results will then be combined with the results of the 4 bladder taps to determine how much damage has been done to the kidneys. We will then sit down with the urologist, the open fetal surgeon and a whole bunch of other doctors and counselors to discuss what our options are.

As of right now we do not know the condition of his kidneys or lungs. The doctor we saw today mentioned that, just from what he can tell on the ultrasound, that his kidneys will not function properly for long term use, which would mean a transplant. I don't know what "long term" means though. I will be getting a phone call tomorrow (Wednesday) with the results from today's test and hopefully some more information for what this could all mean for Max.

Please keep us in your prayers that all goes well over the next week or so. We appreciate all of the phone calls, thoughts and prayers that we have been showered with over the past week and a half. Thank you to everyone! We will keep you updated as we receive new information.

Thank you!

Beth, Tim and Max

Sent on February 11, 2008:

Hello everyone!

We have a lot to let you all know about from our visit to Children's Hospital today. We started the day at 6:30 in the morning for a MRI of the baby to get a good look at his lungs, kidneys and bladder. His lungs are only right above average for size at this point in the pregnancy. In other words they are on the small side, but still on the low end of "average." Not great but not horrible news at this point. His kidneys are extremely enlarged but are not showing any cysts or increased echogencity (brightness to the kidneys). This is a good sign that we still have some kidney function. We were told that his case is "severe" and were given some options. We could move forward and place a shunt like I mentioned in a previous email or we could do the open fetal surgery. This is where it gets VERY scary! We have opted to move on and do open fetal surgery. The surgeon told us that the shunt, in his case, would only help develop the lungs more so than help the kidneys. The shunt needs a descent amount of pressure in the bladder to force the urine out into the amniotic sac in order to fill it up, but his pressure is building up into his kidneys instead. This could cause more damage to his kidneys since there wouldn't be as much relief as we would like. The shunt would also have to be reinserting usually about every 2 weeks, which increases a risk for both of us. The open fetal surgery is VERY risky to myself and to Max as well, but we truly feel that this is the best option for Max to have a chance at life. With the surgery, his lungs will have a much better chance for development and there will not be any added damage to his kidneys and bladder. The process of the surgery is this: they will perform a "c-section" and deliver only his bottom half. They will then cut about a 1 inch incision into his lower abdomen and then into his bladder. They will sew the flaps from his bladder to his skin to keep the bladder open for drainage. This will mean that he will be born with a small hole in his belly that will be closed shortly after birth. He will then have a catheter inserted until he is strong enough and big enough to have the obstruction removed. One of the risks that this surgery has is preterm labor. They usually expect the baby to be 8-10 weeks early. I will be on bed rest after the surgery until we deliver. The surgery will happen this coming Wednesday (Feb. 13) around 11am at Children's Hospital. I will recover there from 3-5 days and then sent home. They will have to see me anywhere from 1-2 times per week until we deliver at Good Sam to make sure everything is looking good and developing properly.

We will be the 3rd open fetal surgery done in Cincinnati and only about the 9th in the US. There have been some successes, but there isn't enough data to give statistics on it. The doctors and surgeons that are involved are very knowledgeable and seem to be pretty optimistic this is the best route to go.

This is a ton of information and I am sorry if it is all confusing- it has been a VERY long day :o) Tim and I are extremely nervous and scared, but like I said before we think this is the best thing for us to do. We appreciate and love each and every one of you for all of the thoughts and prayers that you have give to us. We are truly, truly blessed to have each of you in our lives. Please, please, please keep us in your prayers for a little while longer that all goes well during the surgery and that this little man stays in the oven until at least the end of April or May.

All of our love and thanks,

Beth, Tim and Max

Sent on February 19, 2008:

Hello Everyone!

We got home from the hospital yesterday (Monday) and all went well with the surgery last Wednesday. The doctor's said that the ultrasound they did on Thursday couldn't have looked any better. It looks to be that Max is producing some urine on his own and there are already some pockets of fluid around him the in the amniotic sac to help develop his lungs. We won't really know what kind of kidney function Max has until after he is born and they can do some blood work on him. The urologist that sat in on the surgery went ahead and poked a hole in the flap of tissue that was blocking his urine flow. This may mean that they won't have to do this after he is born, but we won't know until then. As soon as I woke up in the recovery room all of the nurses said that his feet are very cute!!! I can't wait until I get to see them!

I am doing pretty well. I am a little tender, but it gets better every day. Max is loving that he now has some fluid to swim in. He is moving around like crazy which is so awesome to feel! Tim actually got to feel it for the first time tonight- it was priceless to see his face when we felt his first kick.

I go back to the doctor on Thursday for another ultrasound to make sure all is continuing to go well. The doctor's told me that the hard part now is to keep me pregnant, so that is our new goal! We have to keep him in there for hopefully another 10 weeks, but I am shooting for 12. This would put me at 35 weeks pregnant when we would deliver.

Anyway, we are very happy with the results of the surgery and are very glad that we took that route. We truly believe that this little boy is going to surprise all of us and grow up to be a very strong and determined young man. He is our little miracle baby! Thanks again to everyone for all that you have done for us. Please continue will of all of the prayers that you have been blessing us with- they are helping! We will keep you all updated as new information is given to us.

If you have any questions please call. I will be here at home on my lovely couch searching the web and watching a ton of movies!

Thanks again for everything!

Love and thanks,

Beth, Tim, and Max

Sent on March 5, 2008:

Hello Everyone!!!

It has been three weeks since our surgery and everything is going pretty well. I had a doctor's appointment last Monday and Max is measuring right on target and weighing in at 1 pound 12 ounces! The only concern was that his amniotic fluid levels weren't increasing, so I was told that if they didn't increase by my next appointment (Today) that I was going to be put into the hospital on IV's. I was told to increase my water intake to see if it would help any. So for a week and a half I have been downing nearly 2 gallons of water/fluids a day. I am serious when I say nearly 2 GALLONS!!! I went in today for another ultrasound and his fluid levels did go up a little bit, so I got to come back home- thank goodness! They just said that we will continue to monitor his levels every week to make sure they are increasing. I will continue with drinking my water in hopes that it continues to help!

I am getting a lot finished while I sit here throughout the week. We have received our stroller and carseat, Max's bedding and his furniture! Now we just have to start the nursery so that we can get all of it out of the living room. Tim has said that the house is being taken over by baby stuff and that he will eventually be completely pushed out of the upstairs to the basement.

It has been a pretty quiet 3 weeks so I don't have too much to report. Please keep those prayers coming that he continues to bake for another 9+ weeks. Once again, we want to thank everyone for their prayers, love and support! We wouldn't be here without each and everyone of you!

Lots of Love,

Beth, Tim and Max

Sent on March 20, 2008:

Hello to all!!!

I will be 28 weeks tomorrow and still pregnant!!! I still have awhile to go but am feeling wonderful and confident that we will make it to 35 weeks or so. We had an ultrasound and an office visit yesterday. The ultrasound showed that Max's heart rate is still perfect and strong and that his amniotic fluid levels have increased over the past 2 weeks! The two measurable pockets that they spotted totaled 3.4 cm of fluid. It seems very low, which it is, but the doctors like to see one pocket at 2cm to see a positive result for lung development. We have this! So woo hoo for Max!

I went into this appointment very nervous because the doctor that I was seeing is the one that Tim and I are not fond of at all. He has no bedside manner and answers questions with one word. But to my surprise after he listened to Max's heartbeat and measured my belly (all is right on schedule) we both sat down and talked about my questions and what tests I would be doing in the upcoming weeks. Needless to say I left the appointment in very good spirits.

Other than Max's increase in fluid this week, I did get the news that I will be going to the doctors twice a week from here on out for None Stress Tests (NST). Next week is my last week at only going on Wednesdays. I will then go every Monday and Thursday for the usual ultrasound to check fluid levels once a week and for NSTs on both days. Good news here: I get out of the house two times a week instead of one!!!!!! WOOHOO!

I guess that is all I have to report. I can't wait to share some more good news when I hit 30 weeks!

Thanks again for all of the love, support and prayers!!!!

Love and much thanks,

Tim, Beth and Max

Sent on March 31, 2008:

Hello All!

Well I went in for one of our two appointments today and it ends up that I am not going home until Max is born :o( The doctor isn't happy with his fluid levels, so they have me on IV fluids to see if they will increase. They will also monitor Max's heartrate 3 times a day to make sure that all sounds good and one of those will include a none stress test. His concern is that the bigger Max gets the higher the risk of compressing the umbilical cord, which will decrease the amount of blood and oxygen getting to the baby.

The doctor did mention that this is not an emergency of any kind, he just feels more comfortable with me being monitored here at the hospital than coming in twice a week. He did mention that depending on how things go that there is a chance of him taking the baby by the end of the week, but he definitely thinks that Max will be here by the end of April. With that said, they will be giving me a dose of steroids tonight and tomorrow to help his lungs develop a little more before he is born. The doctors said that Max will let them know when he is ready to be born, so they are going to base everything on him and how he "communicates" to us.

Once again, please keep us in your prayers that all goes well and that Max decides that he isn't ready until the end of the month. We greatly appreciate all that you have done for us over the past 2 months. We are truly, truly blessed to have each and every one of you in our lives.

Please feel free to call me while I am here in the hospital. I will keep you all updated more often as I will now have even more time on my hands!

All of our love and thanks,

Beth, Tim and Max

It's kind of fun to look back and see where we were at this exact moment 3 years ago.

Thank you to all that have followed us throughout the past 3 years. Your thoughts and prayers are greatly appreciated. Here's to many, many more years of fun and encouraging updates on our growing family.

Thanks again,

Beth, Tim, Max and Baby L.

Three Years Ago

2011-02-13T10:51:00.000-05:00

Three years ago today our son's life was saved. Some may say that I am the hero in this story, but in our eyes, the true heroes are the doctors that performed this miraculous surgery. We were only the 6th in the country and the 3rd in the Tri-State area to have this particular surgery done. How's that for statistics?

I remember both vaguely and clearly how February 13, 2008 went. Tim and I arrived early that Wednesday morning. I got into my hospital gown and had my IV placed. I sat on the bed in our room and waited. Mine and Tim's parents arrived in the meantime and waited with us. Before we went down to the OR waiting room the chaplain came in and said a prayer over myself and our unborn son. We were then wheeled down to the holding area where I was prepped for surgery. A nurse walked in and I couldn't place where I knew her from, but Tim knew right away. Although I didn't know this particular person very well, it was comforting to know that a familiar face was going to be in the OR with me. Anyway, they had me drink a shot of some very tart medication that helps with nausea. Then they gave me some versed through my IV to help calm my nerves. This medication makes you feel like you have a really, really good buzz (or at least that's what they told me since I don't drink). The rest was a blur, but I do remember getting into the OR, sitting on the table and leaning over a nurse while the anesthesiologist put in my epidural. Then I laid down and was told they were going to give me some oxygen. Yeah, that oxygen had a little something in it because I don't remember anything else.

I woke up in recovery and the first thing I remember was the nurses telling me how cute the baby's feet are. I managed to tell them that it wasn't fair that they got to see him before me. That's all I remember.

I was hooked up to several medications. I was contracting so they had to do all that they could to keep me from going into labor so most of the medications were to stop that from happening. They had me on Magnesium, which in my opinion, was created my the devil himself. Some people this medication gives flu like symptoms to, but in my case it made me extremely HOT. I wasn't allowed to have anything to drink so I had a major case of cotton mouth. Tim had my room set to the coolest temperature the thermostat could go to and I was still burning up. They gave Tim a bucket that he kept ice water in so that he could wrap my in cold wash clothes. I remember sucking on the rag so that I could get the water and tiny ice cubes that were stuck to it. Tim kept telling me that I was going to get in trouble, but I was on day 2 of not having anything to drink. Anyone that came into the room wore twice as many clothes as they normally would because of how cold it was. Tim would get excited when I woke him up in the middle of the night to see if he could get me some colder water for my rags. It meant that he got to go out into the hallway where it was warm. For those wondering how long they made me suffer without anything to drink, it was on day 3 that I finally got the sprite that I was begging them for since I came out of surgery. 3 horrible days of nothing in my mouth, but I survived.

I was discharged 5 days later and spent the next 13 weeks on bedrest (7 at home and 6 in the hospital).

It was three years ago that I got the opportunity to save my son's life. I am not a hero. I am mother.

I am also...

Max's Labs

2011-01-24T20:33:00.000-05:00

Max had his tri-weekly (I think I just made that term up) labs today. Dr. Ben emailed me the results:

Creatinine .3
BUN 20

In a nutshell, this means that Max's kidney is doing exactly what a kidney should be doing.

In addition to Max's lab report, he is doing fantastic in all other areas as well. He is walking, running (not really, but he thinks so), sort of eating and getting ready to be tested for preschool.

Yeah, we met with the Campbell County schools to see if Max would be eligible to start preschool in August. Max will graduate from First Steps in May. This is the program he has been in since he came home from the RCNIC. They provide a speech therapist and a physical therapist that come to the house to work with Max. After he is finished with this program, he may still need therapy and the school could provide that along with the educational and social aspects of a classroom setting. So we will be meeting with the school again in mid March to start the testing to see if he will qualify. It's a big step for Max and for both Tim and I. I think Tim and I are having a harder time with it than anyone though. Max needs this though and we will do whatever is in his best interest.

Life is good. We are ready for Spring so that we can get outside to play rather than being cooped up in our tiny little "rental" home, but life is good :)

.3, 2,400 and 6

2011-01-11T23:28:00.000-05:00

Max had labs drawn last week and his creatinine has come down from .4 to .3. They also did a test called a Cystatin C which is another test that measures kidney function. He has had a few of these done but this one came back the highest it's every been at 74. To make that a little more clear- this level was at 6 or 8 while he was on dialysis and in the 40s while he was rejecting his kidney so for it to be at 74 means that Max's kidney function has improved dramatically over the past few months. Dr. Ben got a fist pump from Dr. G for this. I love it!

Max also had a level of the antibody that was attacking his kidney taken. That number started at 11,000. It is now at 2,400. He doesn't need to have this level checked for a few months unless his creatinine does funny things again. This makes all of us very happy :)

We are also celebrating Max's 6 month kidneyversary. It blows us all away how far he has come over the past 6 months. It's amazing. He learns something new every day and you can tell that his little wheels are turning at all times. He makes my heart smile.

I apologize for not posting in awhile. I hope everyone had a fantastic Christmas and a Happy New Year. Here are a few pictures of Max from over the past few weeks. Have a great week everyone!


                                                                     Christmas Morning

This is what you get when he doesn't nap and it's getting to be around bedtime :) I love it.

Our house is SOLD!!!

Thank you!

2010-12-22T15:47:00.000-05:00

Tim and I wanted to take the time to thank those that donated to Project Santa this year! We had another successful year and it couldn't have been done without your help.

We had a great time once again delivering the toys to our contact ladies, Maggie and Cathy. We were also able to deliver our annual cookies to Max's nurses and doctors, which is always so much fun.

Max had a clinic appointment with Dr. Ben that afternoon. Max's labs are stable enough for him to get a little bit of a break. He has been pushed to every other week instead of weekly for labs and he won't be seen in clinic again until the first week in January. In a nutshell, this means that Max is doing fantastic.

We got to see one of the fellows that started when Max was only a couple months old. She hasn't seen Max since shortly after the transplant so when she saw that he was walking and talking she got emotional. It just proves that even though their job can be very difficult, if you can make it through those hard times the end result is so rewarding. Max is a perfect example of this because 2 years ago, not many people thought he was going to survive and now here he is walking down the hallway of the nephrology office talking to anyone and everyone that would listen to him- whether he knew them or not.

Dr. Ben is leaving us this spring, so when I saw him walking down the hall right next to the little boy that he had a hand in saving, was one of the coolest experience of my life because I know those moments are limited. I have to say that it brought a tear to my eye to see all of those people lining the hall to watch my son walk. A simple task that may seem like no big deal to some, but to us is a huge accomplishment for the little boy that wasn't suppose to survive.

So again, we thank you for standing by us throughout this journey. It has been a long and very difficult road, but the end result has been absolutely fantastic.

Big Milestones

2010-12-10T16:33:00.005-05:00

Hello All:

Max is doing fantastic! He continues to amazes us on a daily basis with how much he has accomplished over the past 5 months.

For example:

Before the transplant, Max had a vocabulary of only 2 words. "Ah" and "Dada". Today Max's vocabulary includes about 200 words. He is also starting to put 3-5 word sentences together. He is doing so well that his speech therapist said that she doesn't need to come on a weekly basis to work on language anymore.

Max has also started eating again. His therapist and I put him through a "Eating Boot Camp" that involved him sitting down three times a day and taking three bites at each sitting. After those three bites he could get up. He mastered that very quickly so we moved him up to 5-7 bites. Again, he mastered it. He is now sitting down and eating an entire 3.5 oz jar of food 2-3 times a day! We have also discovered that he likes chocolate milk, so we are giving him that when he asks for a drink now. When he is finished he says "yum." It's unbelievable.

The last accomplishment that we have for this post is that Max is... Well I will just let the pictures tell you:

Yup. He's walking...
...and he is so very proud of himself for doing so.
We are so very, very proud of this little man as well.

So he is not a pro at it just yet, considering shortly after these pictures were taken he fell, but dude the kid is walking when only a few short months ago he wasn't even bearing weight on his feet. He has a walker, but I don't let him use it too much because he relies on it instead of trying to figure it out on his own. He is mastering it very quickly and we couldn't be any prouder of him.

Needless to say, the kiddo is on fire. We have all of you and your fantastic love, support and prayers for getting us through the past 3 years. Thank you, thank you, thank you!

Have a great weekend everyone!

Reminder

2010-12-02T13:30:00.002-05:00

Hello:

I am just reminding those that want to take part in Project Santa this year that all donotions need to be turned in to me by Monday, December 13th.

Please keep in mind that we are gathering gifts for kids of all ages and that all items must be brand new with minimal fabric. I will also need an estimate of how much you spent so that I can fill in the value portion of the donation form for the hospital.

If you have any further questions or are ready to set up a delivery you can email me at mommy2max08@yahoo.com

Thank you everyone :)

Happy Thanksgiving

2010-11-25T23:07:00.002-05:00

Happy Thanksgiving to all of our devoted readers! I can't even begin to explain how thankful we are for this holiday season. This time last year Tim and I wouldn't even talk about the 2010 holiday season because we were so afraid of what the future held for us and our little family of 3.

This year- yeah this year is the first year that I actually understand exactly what Thanksgiving is all about. Thanksgiving is not about the food on our table or where and when we will celebrate the holiday. No, Thanksgiving is about the people that you get to spend it with and looking back over the past year and realizing how completely blessed you are to be exactly where you are on this given day.

My goodness we have so many things to be thankful for this year. Our family and friends for standing by us, supporting us and loving us throughout this year. The nurses that we spent our long days at the hospital with. Dr. Alonso, Dr. Alam, Dr. Tiao and the entire transplant team for successfully getting my kidney out and into Max with as few complications as possible. We are so incredibly thankful for Dr. Ben, Dr. Brad and the entire nephrology department for their expertise and devotion to getting Max to where he is today. We would not be where we are without them. (Dr. Ben- We are going to miss you greatly).

Thankful doesn't even begin to describe how I feel about this holiday season. I don't know if there is a word out there to express our gratitude that we get to celebrate this Thanksgiving with our son. Max has taught us more in his short 2.5 years than we have learned in our entire lives. His smile is contagious beyond belief and oh his laugh. Yeah his laugh is medicine for the soul. He is the light of our lives and we are thankful, blessed and honored that he is here with us to be celebrating this beautiful 2010 holiday season.

Happy Thanksgiving!

Urology Follow Up

2010-11-12T09:33:00.002-05:00

Max had his urology follow up appointment last week. Dr. Alam walked in and started laughing because Max was literally climbing up the windows.

He took a look at Max's vesicostomy and said "We'll see you back in 6 months with an ultrasound." I looked at him confused because we always do ultrasounds and follow ups every 3 months. He told me that Max is clearly growing very well since the transplant and that he "has faith for his bladder." He wants to give nephrology the time that they need to get Max's kidney 100% healthy and to get his meds situated.

6 months from now will be Max's 3rd Birthday! I can't believe it. At our next appointment we will ramp up Max's ditropan to help with the stretching process of his bladder. 3 months after we do that, Max will have a urodynamics and a VCUG done to see if his bladder has grown and to check the pressures. With that information, we will be able to see if Max's vesicostomy can be closed.

So this all means that it's possible that Max will have a closed system in less than a year! We are holding onto hope, but not getting them too high. We are well aware that there is still a chance that he will need a bladder reconstruction, but there is nothing wrong with keeping the faith- especially when the doctor told us he has faith as well.

Keep the faith.

2nd Annual Project Santa

2010-11-10T13:20:00.003-05:00

It's that time of year again! I can't believe the holidays are just a few short weeks away.

With the huge success that we had last year, Tim and I have decided to continue with Project Santa this year. We will be collecting toys for the kids that will be spending their holiday season at Cincinnati Children's Hospital.

We are asking for those that want to help this year to send new toys with minimal cloth on them so that they can be wiped down easily. We are looking for toys for all ages (birth to eighteen years of age). The deadline for getting your toys to us is Monday, December 13th. This will give us enough time to get the toys to the hospital in time for Christmas.

If you have any questions or are ready to drop your toys off please contact me at mommy2max08@yahoo.com.

We are looking forward to another successful year of putting smiles on these kid's faces!

Life is Good.

2010-11-01T20:50:00.004-04:00

Paging Dr. Max
Max had his biopsy on Thursday morning and everything went well with it. They were able to sedate him without having to intubate him which resulted in him waking up smiling and talking to us. He did great.

Dr. Brad and Dr. G came into the room a few hours later with the results. The second biopsy looked a lot better than the first. Max was considered to be in level 2 rejection (moderate) with the first biopsy and he is not borderline level 1 (mild). Dr. Brad told me that the pathologist had a hard time finding one aspect of the rejection on the biopsy. We were able to see the slides on the computer and there is a huge difference between the two biopsies. The first one had a lot of bluish purple dots all over it which were the bad cells that were attacking the kidney. This time around, there were very few. Very good news.

Because there was still minor rejection they went ahead and gave him another dose of the IVIG and and one more dose of IV steriods. He also got two high doses of oral steriods in hopes that this will treat the remaining bad cells. There is some confusion of whether or not there will be a sixth IVIG infusion. I am waiting for that to be cleared up and Dr. Ben will let me know the verdict later this week.

Max's creatinine is still hanging out at .5, but the doctors are now pretty certain that it's because of the high dose of Prograf (anti-rejection medication) that he's on, so they are okay with it staying at .5 while he is on this dosage.

Max is doing great. He is all over the place and doing what a typical, healthy two year old does (minus the eating).

We also have some very good news on the home front. We are officially under contract and will be closing by the end of the year. The plan is for us to rent the house back from the new home owners until March 31st. We will then move in with my parents and break ground on our new home at that time.

We're anxiously waiting to see what else November has in store for us!

Life is so good.

Handy Manny, Doctor Max and Mickey Mouse
Hehe, Max got his shoe dirty- it's the small things in life!

2010-10-30T15:04:00.001-04:00

I will do a more detailed update on Monday, but the biopsy results are in and they show an improvement from his first biopsy.

More details to come.

Happy Halloween!

2010-10-26T16:34:00.003-04:00

I was incorrect on the last post when I said that the antibody that was attacking Max's kidney was gone. We actually had not done that test yes at the time of that post. We are now waiting for the results of those labs that were drawn on Friday.

So Max had his fourth and final IVIG infusion on Friday. The infusion itself went very well, but Max's white blood cell count was extremely low (his was 500 when it's suppose to be 1,500-8,000). Yeah really low, so the doctors ordered for him to get a dose of neupogen which is a medication to increase white blood cells. They also checked his labs for a few viruses that could have been causing the rise- all of which came back negative.

Having a white cell count of 500 meant that Max was more susceptible to infection, so we were told to keep him in for the weekend to protect him from getting sick. So we spent the beautiful weekend inside the house.

Monday we went to have repeat labs drawn to make sure his white count took to the dose of neupogen. It did- his count went up to 3,000. Unfortunately, that was the only good news that we got from those labs. Max's creatinine has gone back up to .5.

What dose this mean? It could mean a few things- Max is still in rejection or Max's Prograf dose (anti-rejection medication) is so high that it's causing the rise in his creatinine. The only way to find out what's causing the rise is to go in for another biopsy.

It never gets easy to sit hear and wait for that phone to ring. You're waiting to hear the results of your child's tests or waiting to see what the panel suggests we do next. Suddenly the phone rings and the caller ID says Cincinnati Children's 513-636-0000. My heart drops to my stomach while I wait to hear what Dr. Ben has to say. Today, Dr. Ben told me that everyone thinks that we need to move forward with getting another biopsy.

So, on Thursday at 9:30am, Max will be going in for his 2nd biopsy of the kidney. We should have preliminary results sometime Thursday afternoon/early evening.

I am not going to lie- I am scared. I don't know how much more I can handle. All Tim and I want is a little bit of normalcy, and it's not looking like we are going to get it anytime soon. My dad told me today that our lives are never going to be "normal." He's absolutely right.

Despite the reality of what our normal is, our hearts are hurting. I think we got our hopes up that after the transplant life would be exactly how we wanted it to be. Max would be healthy and things would go swimmingly with the new kidney. It was a perfect match after all. I need to stop getting my hopes up so high- maybe life wouldn't be so disappointing.

Life is Good.

2010-10-20T10:22:00.002-04:00

We got word yesterday that the antibody that was attacking Max's kidney is now gone. It could reappear in a few months, but we will keep a close eye on it. To be honest, that really is the only new piece of information that we have. His creatinine is stable at .4. Everyone is still happy with it since it hasn't gone up. We have increased Max's Cellcept which is one of his antirejection medications, so it is possible that his creatinine could show a decrease in his labs on Friday.

Speaking of Friday, Max's forth and final IVIG infusion is at 9am this Friday morning. He has done very well with each infusion. We are hoping that this is the final treatment regimen that he needs to nip this rejection in the bum. Please pray that this is the end of this bump in the road.

Other than that, I will let these two videos tell you what else is going on in the life of Max. The first one is of him and his slap happiness after a 6 hour day in a hospital bed hooked up to an IV without a nap. It's very contagious so watchout :) The second video is just a little something new that our little man is doing. Hint: a new pair of braces + a new walker = success!

Cincinnati Walks for Kids

2010-10-09T19:39:00.001-04:00

One week from today, Team Mighty Max will be walking in the Cincinnati Walks for Kids that benefits Cincinnati Children's Hospital. We are asking for sponsors and/or people who would like to join us on the one or three mile walk. You can click on the link below to get more information about the event.

Cincinnati Walks for Kids

The walk is being held at Coney Island on Saturday, October 16. Registration begins at 8:30am and the walk begins at 10am with an opening cermony. There will be a complimentary lunch for all walkers along with games, rides and crafts for the kids until 1pm.

There is not a registration fee, but each walker is asked to raise at least $25. Any walker who raises $25 or more will receive a Cincinnati Walks for Kids T-shirt.

If you or anyone you know are interested in walking or sponsoring Team Mighty Max, please follow the link above to get started. All of the money that our team raises will be donated to the dialysis unit at CCHMC.

Please help us make our first year a huge success!

It's going to be a VERY long day

2010-10-08T09:29:00.004-04:00

So we were told that Max would only need one dose of the IVIG that he received last week, but plans have changed. We are sitting here at CCHMC waiting for the VAT team to put an IV in so that Max can get his second out of four infusions on the IVIG. Yeah, we have to do this two more times.

We also found out that the antibody that is attacking Max's kidney is rare/new. Rare/new enough that they don't even test for it in the pre transplant labs. So on top of the 4-6 hour IVIG infusion, Max will be getting another medication called Rituxan that takes another 4 hours to infuse. 10 hours of infusion plus the 2 hours of waiting for an IV and the hour that we have to wait after the infusion ends before we can get discharged equals a very long and tiring day for both Max and I.

At this point in the post, Max has his IV and has started the Rituxan infusion. We waiting an hour and forty five minutes for the VAT team and it took 45 minutes to get the IV in and secured. Thankfully, they were able to get it in on the first stick but with the complete and utter breakdown that Max had, he was sweating bullets and they couldn't get it taped down. They started the med right away and the pump kept alarming so they had to switch pumps. Finally, at 10:30am, things are going smoothly- two and a half hours after we got here for our 8am appointment.

one half hour down...

2010-10-04T09:11:00.002-04:00

Max got discharged on Saturday evening just like planned. We did end up getting one more test result Friday night that we were hoping not to get. Max's body is creating antibodies against the kidney. So not only does he have the cellular rejection that we found out about on Thursday, he also has this antibody rejection.

Saturday morning Max was hooked up to his steriod and another medication called IVIG. The doctors feel that one dose of the new med should take care of the antibody rejection. I believe the plan is to get another biopsy in 2-3 weeks to make sure that there is not any more rejection in the kidney.

Max was very glad to be home (and so were his mom and dad). We learned that something as little as a cold could put these kiddos into rejection since their immune systems go into overdrive to rid of the illness it tries to get rid of everything- including the foreign kidney. With that said, Max has become a hermit. Tim and I have decided not to take him out at least until we make sure that this rejection is gone, possibly through flu season. Yes, we may be going over board, but this rejection thing is not something to take lightly and to be honest it was the worst piece of information we have ever received. I still think we will take him Trick or Treating and to the Pumpkin Patch since both are held outdoors, but other than that, the poor little man is "tuck" inside the house.

We will be heading in for repeat labs and a follow up visit, so please continue to keep him in your prayers. We need that creatinine to stay at .3 or lower. We are not out of the woods just yet- heck we will never be out of the woods now that I think about it.

Prayers are greatly appreciated.

Results: Rejection

2010-09-30T21:12:00.005-04:00

Definition of Rejection:
Something rejected as imperfect, unsatisfactory, or useless

What Max's body doesn't know is that this kidney is perfect. This kidney is what his body needs. This kidney is the most useful thing that his body has seen in 2 1/2years. So why is his body rejecting this perfect and purposeful kidney? We are all still searching for the answer. Whether it be searching spiritually or medically, we are all still searching.

Dr. Brad walked through that door and I knew something was wrong because he didn't have the smile on his face like he does every other time he walks through that door. Then we heard it. The biopsy showed that Max is rejecting the kidney. My heart sunk and Tim sat back in his chair. I was numb. He proceeded to tell us that there are three stages of rejection: 1 being mild, 2 being moderate and 3 being severe. Max is at stage 2. I stopped breathing. Tim reached up and grabbed my hand: a reminder that I wasn't alone. Dr. Brad drew us a picture and spoke about what he was drawing. I don't remember a word of what he said. I heard the word rejection and I shut down. My worst fear was now a reality. Max's body is rejecting this absolutely perfect kidney just a short 3 months after he got it. This perfect kidney, that we didn't have to go looking for, was at risk of failing. Dialysis immediately popped in my head. I just got rid of all that crap- were we going to need it again? We are just now getting used to this new found freedom and now it was gone.

Then I heard it. It's reversible. What?!? I slowly started coming back to what he was saying. He told us that we weren't getting out of here tonight because they were going to put Max on a 3 day course of high dose steriods to try to reverse the rejection. I then asked, what if that doesn't work? Then there is another option. Max will have to have a PICC line placed so that he can get 10-14 days of stronger medication. That will result in a 10-14 day hospital stay or just a few days stay and us coming in every day for the infusion. With this he will have to be put on strong antibiotics because it will wipe his immune system out again. (Remember: I was kind of blanked out at this point so some of this may be wrong, but this is what I think I remember him saying). Dr. Brad seemed cautiously optimistic that the steriods will work. He didn't go into full details about option #2 because he doesn't think we will need it. Fingers crossed that the steriods work.

Anyway, he continued to explain to us what the next couple of weeks are going to look like and it basically looks like this: needles, needles and more needles. Lots of blood draws to keep an eye on that creatinine. They need to see it coming down to know if they got all of the rejection out of there. If it doesn't then Max will be heading back in for another biopsy. If that still shows signs of rejection, then we go to that second option that I explained above.

We were also able to successfully have a test done that they have been contemplating doing now since he got the kidney that tells us exactly how much Prograf Max actually needs. They hesitated doing it because it requires 4 blood draws at 4 different times and they didn't want to put him through that. Since he has an IV from the procedure they went ahead and drew from that today and were able to get all 4 of the blood draws without any sticks.

So hopefully between the biopsy and the kinetics blood testing they will be able to figure out what Max needs to keep this kidney happy.

We have been told over and over and over again that the chance of Max rejecting this perfect, 12 out of 12 matched kidney is so very low. All I have to say is that the CCHMC Nephrology staff just got one hell of a case study. I guess we just proved that it doesn't really matter if you are a 1 out of 6 match, a 6 out of 6 match or a 12 out of 12 match.

Needless to say, my faith is shot and I don't think Tim ever got his back since all of this began so we are counting on you. We need you. Please lift us up in prayer. We have seen miracles happen, but after having been through what we have been through you really start to wonder. Was it a medical miracle or a miracle of God?

We are down on our knees begging for this steriod treatment to work. Please keep Max in your prayers. I have a feeling we are going to be hearing a lot of "I tuck" tomorrow considering he is stuck in this God forsaken room until at least Saturday.

Please, oh please let the steroids work.

Biopsy Update

2010-09-30T15:13:00.003-04:00

Thank you all for the prayers. Max did very well during the procedure. He knew exactly where we were when Tim and I walked him to the procedure room and started to cry. I decided to hold him while they put him to sleep with the mask. I have done this before and new it was hard, but it wasn't fair to just hand my screaming 2 year old over to someone he didn't know if they would let me hold him. Yeah it was much harder than I remembered. I helped get him up on the table and Tim and I were escorted to the waiting room (even though we can get there with our eyes closed). I got to the waiting room and a couple of tears fell, but I held it together for the most part.

Dr. Ben and Dr. Brad come out about an hour later and said that he did great and that they were able to get two samples of the kidney. They put a rush on the results in hopes that we will get them by the end of the day today.

There was minimal bruising and we are putting pressure on the kidney as we speak, so we should be able to go home tonight. If all goes well we will be out of here around 10pm.

We are three and half hours into this and he is do fantastic. I may have just jinxed ourselves, but I am so proud of him. He sat up once and got mad when we laid him back down, but he is good now. We are on our second viewing of Toy Story and he's still content. Fingers are crossed that it continues to go this smoothly.

Please continue to pray that there aren't any signs of rejection and that we have an uneventful six and a half hours.

Biopsy is Scheduled

2010-09-28T12:31:00.003-04:00

Max had repeat labs yesterday afternoon that showed that his creatinine is still hanging out at .5. Dr. Ben talked to the head of the transplant program and he said that if it was still elevated that he recommended getting a biopsy. So that is what we are going to do.

Thursday morning at 10am Max will once again go under general anesthesia and will have a few samples of his kidney taken to check for rejection. Needless to say, I am petrified. It has been a very hard week and to add this on top of it is not what I was hoping for.

Dr. Ben and Dr. Brad have made time in their schedules to be the one's who perform the procedure, so that has helped ease our minds a bit. Thank you Dr. Ben and Dr. Brad.

Max will be admitted for at least 10 hours after the biopsy is done. Some how we have to try to keep Max laying down or sitting at no more than a 30 degree angle for 10 hours after the procedure. I see a lot of Handy Manny, Mickey Mouse, Buzz and Woody in our very near future.

So once again we are asking that you continue to pray for Max. We are praying for no signs of rejection and for no complications during or after the procedure.

Stay tuned for a heart breaking post about one of our fellow kidney buddies. I can't quite put my thoughts into words just yet, but I will sit down tomorrow and write it all out.

Thank you again for all of your love, support and prayers.

I am so in love with this kiddo!

2010-09-23T21:40:00.001-04:00

We are in so much trouble

Prograf Level of 3.4

2010-09-23T15:23:00.002-04:00

Max's Prograf level came back measuring a little low at 3.4 today which means that the elevated creatinine is not being caused by the medication. So, Max and I will be heading back over to CCHMC tomorrow afternoon for repeat labs and an ultrasound. Dr. Ben is going to meet us in radiology so that we can get the results right away. Yeah, Dr. Ben is awesome like that. Thank you!

We have several theories of what's causing the elevated level. We are pumping him full of water today to see if it's simply dehydration. It could be because he just came off of his Prednisone. The tricky thing about Prograf is that anything and everything can make this level unhappy. It's kind of a pain in the butt to be honest.

Anyway, I will let you all know what the ultrasound shows tomorrow. Please keep those prayers coming.

Oh and a bit of funny news about Max. I have no idea where he got it from, but he now crosses his arms. He only does it when he sits on his little stool, but it's possibly the funniest thing I have ever seen. I will try to get a picture of him doing it and post it, because it's just too darn cute not to share.

Creatinine of .5

2010-09-22T18:41:00.003-04:00

Max had his biweekly labs today. We got the word that his creatinine has creeped up to .5- it's typically in the .3 to .4 range, so the fact that it has gone above his norm is somewhat worrisome. No one is freaking out but me at this point though.

One of his medications (Prograf) could be causing the rise. We will get his Prograf level back tomorrow (Thursday). Depending on what it shows will determine what the next step will be. If the level is within it's normal range, Max will have repeat labs and an ultrasound on Friday. If the level is elevated, they will tweak the dose of Prograf that he is receiving and repeat the labs on Monday.

There are a lot of things that could be causing the rise in his creatinine. Of course, the first thing we worry about is rejection. The doctors insist that it is very unlikely that this is what's causing it. There is a chance that Max will have to undergo a biopsy of the kidney just to make sure everything is looking good. We would rather not go down that road because it would require anesthesia and it would add another surgery to Max's already long list of procedures. It's bound to happen at some point, but I am not quite ready for him to have to go through it just yet.

We are asking for prayers that his Prograf level is just slightly elevated and needs to be tweaked. I am also asking for volunteers of someone who would like to come hold Max down for his labs because it's getting old. No body wants to watch their little one go through this and frankly I am tired of being the bad guy. Although I am loving that Max is getting to the age where he wants his mama when we walk into a doctor's office.

Please, please pray.

2 Months Post Transplant

2010-09-09T17:18:00.003-04:00

I can't believe that it has been two months since Max got his kidney. It seems like yesterday we heard the news that the surgery was getting moved up and here we are- 2 months into our new life.

Max is doing fantastic. The kiddo is getting into everything and talking up a storm. He now walks while onto onto someone's fingers and he just started furniture cruising. It's just a matter of time before we are chasing this boy around the house. Max is also starting to mimic everything you say and do. He has added about 10 words to his vocabulary which is a huge deal considering all he said before surgery was "ah". His speech therapist comes back from maternity leave on Tuesday and I can't wait to see her reaction!

I don't know how tall Max is at this point. That seems to be the popular question of the month and I don't know the answer. We will find out in two weeks when we go back to the doctor for his follow up. When he and I are standing up, the top of his head hits my hip. Now that's not saying much because I am short, but he looks huge to us.

Max did graduate to once every other week visits to the hospital to see his ginormous fan club. He still has to get once a week labs, but this is a step in the right direction. Let me hear a big woohoo to that!

Tim and I were informed that we need to start thinking about what medications we want Max on long term. There are risks to all of our options, but we need to sit down and dicuss them. No one really likes the one he is on now because it will end up damaging the kidney in the long run, so ideally we will get him off of it within the next few months. The other medication, Rapamune cannot be taken if Max is to go into another surgery. So if we decide to put him on that, we would have to discuss the plan for what we would do for any future surgeries. The other option would be to keep him on only the Cellcept that he is also taking currently. No one really knows if this is the best option or not, but it's an option. I keep hearing that Max doesn't really follow the typical protocol for kidney recipients- imagine that. But this time we are on the good side of that little piece of information because Max and I were a 6 out of 6 match (maybe an 8 out of 8 match according to Dr. Ben). Supposedly the way that mine and Max's numbers matched up was extremely rare, which makes us an even better match. I don't quite get all of the logistics of it, but I do know that we were one heck of a match up. Anyways, all of these decisions will be discussed between both Tim and I and Max's doctors. We will do what's best for Max and for the kidney.

So that is really all that is going on in the life of Max and his little family. Life is good :o)

One quick thing: I am going to offer you guys another Q&A opportunity. If you have a question about the transplant, life after tranplant or anything random, post it in the comment section of the blog and I will post the responses in a seperate entry next week. I know that one person asked why a non functioning kidney affected Max developmentally and physically and I will answer that one in the response post. So here is your chance- ask away :o)

Here are a few pictures and a video of what happens when you try to lay your two year old down for a nap while he is hooked up to his feeding pump:

ARGH!

Cincinnati Walks for Kids

2010-09-01T19:31:00.000-04:00

Cincinnati Walks for Kids

We have been wanting to walk in the Cincinnati Walks for Kids now for 2 years and haven't been able to do it until now! We are so excited to able to take part in this fantastic walk that benefits the entire reason that Max is here. This walk raises money for Cincinnati Children's Hospital. We are asking for your support. You can donate to Tim, Max or I or you can walk on our team and raise funds on your own. We are walking as "Team Max" and have tshirts for all that decide to join us on October 16th at Coney Island.

If you are interested, please follow the link above to get started. We look forward to making our first year a huge success, but we can only do that with your help! If you have any questions you can email me at mommy2max08@yahoo.com.

We are looking forward it!

Bathtime with Max

2010-08-23T21:39:00.002-04:00

Have a great week!

Unbelievable

2010-08-18T22:40:00.002-04:00

We Love you Max from Rick Neltner on Vimeo.

For everyone that participated in this fantastic project, thank you. This just proves how many of you wonderful people are out there praying for our family and it blows us away every time we see it. This project was a secret, so it was difficult for those in charge of getting it together to get in touch with a lot of you. So I want to extend the offer to those that weren't able to get involved the first time around to please participate. I would love to see how many others are out there and all of your creative ways of showing Max your love and support. I can't wait for him to see this video and to fully understand the magnitude of supporters he has out there rooting for him.

Thank you Rick, Allie and Denise for making this project possible. Allie- I don't know how you got in touch with all of these people, but thank you. The fact that you even called CCHMC trying to get all of the doctors and nurses involved (even though they said you couldn't because of HIPAA) proves how dedicated you guys were.

Again, thank you all so very much for taking the time to show us how much you care. We will cherish this for many years to come.

If you want to still get involved in showing Max your support, you can send your final project to mommy2max08@yahoo.com.

We look forward to seeing them!

Life is Good

2010-08-12T09:19:00.005-04:00

The kid LOVES to eat!!!
So last Friday, Tim, Max and I all headed to the much anticipated urology appointment. As I mentioned in an earlier post, Dr. Alam peeked his head into one of our clinic appointments a few weeks ago to let us know that we were in a very good situation for Max not needing the bladder augmentation. That was all he said and he walked back out leaving Tim, Dr. Ben and I wondering what had changed Max's fate.

So Friday gave us all the answers. We were told that since Max now has a working kidney that he is in a whole new situation from a urology standpoint. Max will now grow like a normal kiddo which means that his bladder will grow as well. This means that with the help of a higher dose of ditropan (a medication that helps stretch the bladder) Max has a chance of "stretching" his bladder on his own with time.

What does this mean? Max will eventually be given a much higher dose of the medication. This isn't taking place right now because they want to give the kidney and bladder time to heal and adjust from the transplant. From there- we wait. Max's vesicostomy (stoma that he pees from) will not be closed for along time (we are thinking that he will have this until he is 5 or 6 years old). Dr. Alam promised us that Max will go to the first grade in dry underwear- so it will definitely be closed before then. That seems like a long time away, but it will, unfortunately, be here before we know it. Dr. Alam also promised us that he will fix Max. He promised this twice, so I have full confidence that he will fix Max's bladder. He seemed optimistic that Max will not need the augmentation. No one is promising anything, but he said that once these valve kiddos get kidney transplants, their bladders seem to work themselves out. Fingers crossed that Max is lucky enough to have this happen. Everyone is on board with doing everything in their power to avoid the augmentation.

There are definitely some cons to this whole situation. Max is not allowed to swim in a lake, ocean or pool until his vesicostomy is closed. He is also not allowed to sit in a bath tub unless the water is below his hips. The bottom line is that the vesicostomy is not allowed to be submersed in water of any kind. The reason: infection risk. As badly as it stinks that we won't be allowed to take Max swimming for a very long time, the benefit of not having to have the augmentation is much greater. The only other issue we are having is diapering. We are doing a lot of laundry with three outfit changes a day because we can't keep him dry. We are experimenting and brain storming ways to do so, but are not having luck thus far. It will take time and lots of brain power, but we will master this at some point.

All the not so fun cons of the urology appointment are overshadowed by the fact that the surgery that we were told Max will need from the beginning is slowly slipping further and further away. And that is enough to put a big smile on all our faces and to start thinking of other ways to make the hot summer days cooler than all of those who are out there swimming in their pools.

It's going to be a great day!

I know I said birthday pictures, but the files are huge and won't download, so here are some more recent pictures:

Max and his transplant buddy, Brandon. Brandon lives in Tennessee so we don't get to see them too often, but these guys are going to have a blast as they get older.
Going on a stroller ride after the transplant. Max won't wear a mask, so this is how we protect him from the nasty germs at the hospital. We call it "the pope mobile."
Max helping his nurse out by listening to his heart. The kid knows way too much about the medical world at the age of 2.
Daddy and Max at the zoo post transplant.

I am SOOOOO Sorry!!!

2010-08-11T15:02:00.002-04:00

That was a very long delay in between posts and I left you all hanging on how well the last surgery went and I am so sorry. That was very mean of me.

With that said, surgery #16 was a success. Max is officially, well almost officially, tube free. All he has left is his feeding tube which will be there for quite awhile. The surgery was outpatient, so once Max woke up and showed stable vital signs he was free to go. We got home and he immediately began hopping all over the living room playing with his plethora of toys like nothing ever happened.

I will update more tonight on how the urology appointment went and with some long over due birthday party pictures.

For now, we have to go meet with our architect. Talk to you all this evening :o)

Surgery #16 is Tomorrow Afternoon!

2010-08-04T16:50:00.000-04:00

I hate that we have to send Max into yet another surgery, but this one will be quick and easy. This is the surgery that will rid Max of having a dialysis catheter for the first time since he was 2 months old. This surgery will free Max from all tubes (except his feeding tube which will be in for awhile).

Surgery is tomorrow at 1:15pm. It's an outpatient procedure so he will be home tomorrow night.

I will keep you guys posted on how he does.

Please, please pray

2010-08-02T10:01:00.000-04:00

Some of you may remember me mentioning my cousin Theresa being diagnosed with a brain tumor. Today I am asking that you please pray for her. She will be going into surgery this morning at 10:30 to have th tumor removed.

The doctors are optimistic, but it's still a scary surgery for all involved. Please keep Theresa, her family and surgeons in your prayers today.

The Big 300!

2010-08-01T18:08:00.003-04:00

This is our 300th post on the blog! Not only are we celebrating 300 posts, but we are also celebrating this...

This is a picture of Max right after he pulled himself up from his butt to his feet for the first time! No one was in the room when he did it so thankfully Tim walked in while he was still up. I was downstairs when he walked in on him so he yelled for me to quickly but quietly come up to Max's room. I ran upstairs and went into his room. It took me a minute to realize what I was looking at but when I did I immediately got tears in my eyes and ran to get my camera. Saying that I am proud of him is an understatement.

I can't believe how quickly all of this is happening. Life with a healthy child is amazing! He was fun before transplant, but I can't believe how much fun he is now. It's kind of crazy to see all of the new things that he is doing. He is all over the place and we are having to "baby proof" the house for the first time. This new life is awesome and I can't wait to share more milestones with all of you!

Also, Max's kidney is doing awesome! His labs are beautiful and the ultrasound looks great! Despite the fact that it took the blood drawer 6 sticks to get his blood on Friday, the 3 day a week visits are going well. We should be going down to 2 days a week here very soon. Life with a new kidney is going fantastic!

For those of you who have been asking, Summer is doing okay. They ran into some complications during surgery and have been having some problems keeps her fluids under control since. The kidney is working well and she is producing urine. She is still on the vent and are hoping to have her off sometime this week. Laura is exhausted from being at the hospital 24/7 and is having a hard time getting the rest she needs. Dan is doing well and has been discharged.

Have a great week everyone!

Summer

2010-07-26T22:59:00.002-04:00

I had mentioned in a previous post that Tim and I have gotten the privilege of meeting two other families who's little ones are in kidney failure. Brandon got his mommy's kidney back in May and is back home to Tennessee. He is doing fantastic and we look forward to seeing both him and his mom in August.

Summer is the other little girl we have gotten to know and love. We met her mom Laura a few weeks ago when Max was in the hospital for his PD catheter. They too are from Tennessee and are here in Cincinnati for Summer's transplant.

The day that we found out that Max's surgery was moved up, we also heard that another patient was given Max's old date of July 27th. That patient just happened to be Summer. Summer just recently celebrated her first birthday. A birthday that was celebrated within the walls of Cincinnati Children's. Summer has had a very rough road and it's not over just yet. But tomorrow morning, at 7:45am Summer will be getting her daddy's kidney.

The group of us kidney baby mamas is very small, so we consider ourselves very lucky to have found each other. We consider all of these kids our own and we take them all under our wing. Summer is the youngest and smallest of all the kiddos, which definitely makes her extra special.

Tim and I are both very nervous for Laura, Dan and Summer, but we know that they are in very good hands and are confident that they will be taken care of. We are asking that you please keep this family in your prayers just like you did for us. Tomorrow morning, Laura will kiss the two most important people in her life goodbye as she hands them both over to the surgeons. She too will be pulled between the PICU and A4North to take care of her family just like Tim was, so we ask that you hold them up in prayer. Tomorrow- Laura, Dan and Summer get to begin their new life and we are thrilled to get to share it with them.

Tomorrow is going to be a good day.

Confession

2010-07-26T14:07:00.002-04:00

In the work up process of donating a kidney you are required to have a psych evaluation. During this evaluation you are told that depression is a risk of donating. I didn't quite understand why someone would fall into depression after giving someone the gift of life. I didn't understand until I donated my kidney to Max.

I wouldn't say that I am full blown depressed, but I am definitely down. I finally realized why I was feeling this way over the weekend. The life that I have known for the past 26 months is gone. The life of 10 different medications that were given 6 times a day, feeds every 3 hours, dialysis for 12 hours a day, blood pressures, weights, oxygen, monitors and dressing changes is gone. Don't get me wrong, I am thrilled that all of that is over. This is what we have been wanting from the beginning, but it's definitely an adjustment. An adjustment that I am willing to make, it's just going to take some time to get used to. We have free time that we have no idea what to do with because we haven't had it in so long. We are able to just get up and go and not worry about being home by 9pm to hook Max up to a machine. It's just a weird feeling, but a welcomed one.

During the months before the transplant I tried to prepare myself. I think I put a wall up for preparing what life would be like post transplant. I was more focused on preparing myself for the surgery itself and the risks that came along with it. I think I was too afraid to go beyond the surgery because I was told over and over again how high risk it was. Now that all of that is over and we are home, I am trying to figure out how to live life as a "normal" family. I will get used to this. Life is perfect right now and I couldn't ask for anything more, it's just going to take me some time to get used to having a healthy two year old and all of the things that come along with it.

So this little bout of "depression" will pass. Life is way to short to not enjoy every moment and I will not let this stop me from doing just that. Our little boy is healthy for the first time and we can't wait to grab this new life by the horns and live the heck out of it.

New piece of information: Max had his routine labs and follow up appointment today. While we were sitting in the room waiting for the doctors, Max's urologist poked his head in and told us that he didn't want to tell us this before the transplant because of everything we had going on, but they are going to try again with Max's bladder. Meaning they are going to ramp up his ditropan in hopes that he will not need a bladder augmentation. He went on to say that we are in a very good situation right now. This is HUGE! We have an appointment with him next Friday so we will get more information then, but this was music to our ears. We do not want Max to have to have this surgery. It is a long, high risk and nasty surgery that follows with a 4 week stay at the hospital. Please pray that Max's bladder does what it's suppose to and that he doesn't need this surgery.

I will be posting a prayer request this evening, so please check back to see who is needing your prayers for tomorrow.

Have a great week!

2010-07-21T23:11:00.002-04:00

Bare with me. I have no idea what happened to the blog. I am trying to figure it out, which could take awhile.

Beth

A New Life

2010-07-21T22:02:00.002-04:00

I teared up this afternoon while we were walking out of Children's Hospital. This time was not because we were leaving Max again. I cried because today was the start of our new life. After 2 weeks in the hospital, Max was discharged.

It felt like the first time we brought him home from the hospital a year and a half ago. We had to have a little "class" with the transplant coordinator and doctors on Max's new medications and how/when to give them. The whole discharge process went a lot quicker than I was expecting. Before I knew it we were on our way out the door with our new medications in hand and our follow up appointments scheduled.

We are so glad to be home and all under one roof. Max is thriving and enjoying his new freedom. He got home and immediately wanted to eat. This is all very new to us so we sat him in his seat and fed him. We then sat down for our steak dinner and Max wanted to sit with us and eat as well, so we let him. I can't get over the changes that he has made in the short 2 weeks since surgery. It's crazy to think that everything that he is delayed in was all due to his lack of functioning kidneys. I absolutely love seeing his new tricks and I can't wait to see what else he has in store.

Now that we are home, we are trying to get Max's new med schedule and routine figured out. We still have to care for his vesicostomy, so our nightly routine still isn't as easy as it could be, but we do not have to do anything with his dialysis. This means no more blood pressures, weights, shots, machine prep or hook up which took our bedtime routine from an hour to about 15 minutes. He is no longer needing oxygen which means that he is not hooked up to anything at night. He went from having 3-4 tubes/wires connected to him every night to zero. I have to say, it felt weird just laying him in bed, kissing him goodnight and turning the lights off. I felt like we were forgetting to do something, but this is our new norm and I love it.

I got teary eyed leaving the hospital today, because today is the first day of our new life. Today- we get to be a "normal" family for the first time since before Max was born. Today is the start of our new life and we are going to grab it by the horns and live the heck out of it.

UNEVENTFUL WEEKEND

2010-07-19T12:26:00.003-04:00

MAX AFTER SOME SWEET PATATOES

So not much to report here from CCHMC, Max's platelet count was 94 today which is about half way to where it should be. He has begun to show some interest in eating, and all in all continues to do fantastic. We are still looking at going home sometime early week and we are definitely ready. Beth continues to recover at home and seems to be getting a little better each day, she is also ready for us to be home. Beth definitely misses having her little boy at home. Other than that not much going on, once again THANK YOU FOR ALL THE LOVE AND SUPPORT.

One Week Post Op

2010-07-15T15:04:00.003-04:00

Max and mommy the night before the big day
Here we are. One week post op and things are going extremely well. Max is still doing better than I am, but we are both on the mend.

From a Max standpoint, speech and OT have both been by today. Max was a complete crank so nothing was accomplished. They will retry tomorrow. His platelets came up to 18 today which is still very low, but they are steadily increasing every day, so the doctors are happy. So the plan is to do an xray with contrast on Tuesday to check the swelling in the new ureter and kidney. If all goes well they will pull the catheter and possibly sent us home that afternoon. They may decide to keep him so that they can watch his labs a little more closely. We shall see.

As far as I go. I am doing well. I am still pretty uncomfortable, but it's tolerable. The worst part is trying to get comfortable enough to sleep at night. I am pretty bloated and swollen in the abdomen region and my ribs and pelvic bone are sore, but overall I am surviving.

So what does it feel like to donate a kidney? Well it feels like a train rain over you, reversed and rain over you again. It hurts- really bad. I knew there would be pain, but I was not prepared for the kind of pain that I experienced. Morphine wasn't working and the stronger pain medication that they put me on wasn't working either. Every time I moved or talked I got extremely nauseous. I vomited a couple of times- OUCH! I could barely keep my eyes open. I was light headed, couldn't see straight and just overall felt like crap. Would I do it again? Absolutely.

Seeing the change in Max has made all of this absolutely worth every ounce of pain that I have had. Max's lips are no longer dry, he no longer has circles under his eyes, his coloring is better and he has not gagged once since the surgery. For those of you that know Max you know that he gagged and retched at least a dozen times a day. He has not done it once since last Thursday. It's incredible to see the strides that he has made in just a short 7 days. You can see his little wheels turning all the time. The light is finally coming on in his little head and it's unbelievable to see. He won't nap because of everything going on around him which makes for a very cranky little boy, but overall he is doing phenomenal!

I can't believe it. This whole experience has been so surreal. I am so glad that it's over and we are ready for him to come home, but I am trying to cherish all of these milestones. The experience has been bittersweet for me as well. I have to admit that I had a few days of depression after the surgery. I realized that I left the little boy that we all have grown to know and love on A7 central Thursday morning. I kissed him goodbye and didn't realize that I would never see that little boy again. I am at peace with that now. I realized we didn't loose the old Max, we just got something better. We got the honor of receiving the new "Max 2010" on July 8 and we can't wait to learn all the new things that he's got to offer.

Thank you for coming along with us on the journey of End Stage Renal Disease. This is me officially (and finally) ending that chapter and beginning the new one of Max's life post transplant.

Max one week post op

Max and Beth Update

2010-07-14T21:20:00.002-04:00

Hello everybody It's Tim again

Sorry We haven't posted in a couple of Days. Things Here at CCHMC are going well, Max is recovering nicely. He is like a whole new boy, he's almost back to his normal self, bouncing around his crib and playing like he didn't have major surgery 6 days ago. His platelet count has begun to stabilize and his doctors are happy with all his other numbers. He has changed so much for the better it is unbelievable, who knew a kidney would change him in so many other ways. Max has not gaged once since surgery, he seems more attentive and even his lips look better.

Now for Beth, she is feeling much better than she was on Monday. She is still a ways away from being recovered, but is doing well. She says she will post a more detailed update tomorrow so until then goodnight.

BIG BIG DAY

2010-07-12T09:42:00.002-04:00

Ok so first off I'm glad you all liked the video. Next up Beth is starting to feel a little better and is starting to eat a little bit. Now for Max, as you can see in the video he is starting to feel pretty good. His lab work this morning continues to improve, his kidneys doctors are happy ( BUN 15 Creatnin 0.2) Liver Doctor says she just wants to monitor his blood work for a couple more days then she is no longer needed. His platelet count is still low but the rate at which they are disappearing has improved so that is definitely good.

Alright Are you ready for the BIG BIG NEWS OF THE DAY. It's moving day here at CCHMC. Beth is moving to her make shift 1st floor bedroom at home, and Max (drum roll please) is MOVING OUT OF THE ICU TO THE REGULAR FLOOR ( applause ).

Thank You Again for all of the love and support, I don't know how we could do it with all of it.
Tim

A Little Message From Max

2010-07-11T22:01:00.001-04:00

Just Another Curve Ball

2010-07-09T23:11:00.002-04:00

Hello Everyone this is officially the first time I have Posted,
I thought I would post a little update since my lovely wife is not feeling up to it just yet. Beth is still having allot of pain but she has gotten up a couple of times. She has yet to make it up to see Max, for all of you that know Beth that should give you an idea of the pain she is in. Other than the pain, a little nausea and a headache there is not much going on with Beth, just resting and healing.

As for Max, He has yet again thrown us a curve ball. Max's platelet levels have been low since surgery and the Doctors have all been scratching their heads and running test trying to figure out why. It has been a very busy day for the poor little guy, we have seen nephrology, surgery, radiology, urology and hematology today, all of which have had theories and ideas of the cause. Once again Max stumped them none of the test proved anybodies idea right. I think between today and yesterday Max has had an ultrasound done on every body part. We even had Dr. Alonso and the radiologist present for the last ultrasound.

After all of that, the doctors have all talked and come up with another idea of what might be causing the low platelets levels. They feel Max's liver may have bruised during surgery and some test have shown his liver enzymes are elevated which would indicate that this is true. So as of now the plan is to keep an eye on his blood test as the liver should slowly heal itself and possibly help it along with some vitamin K if needed. So lets all keep our fingers crossed that this is the culprit and it corrects itself with a little time

Thanks Again For All The Love And Support
Tim

The Day After

2010-07-09T16:12:00.002-04:00

Hello Everyone and, no, this is not Beth. Day 2 has been a very uncomfortable day for Beth and Max. Beth has been having a lot of pain, which she anticipated. What she didn't expect was the severe nausea, muscle spasms and headache that accompanies the surgery and the morphine pca.

Her catheter was taken out today and she was given 8 hours to get up and pee. I know, for a fact, that she waited as long as she did because of the pain associated with getting out of bed. When she finally couldn't hold it anymore, she called for assistance and, of course, a male pca came in. My modest daughter looked at me wide eyed and with regret for even calling out for help. Needless to say, she had to pee that bad. Luckily, after the nausea and the feeling that she was going to pass out, we made it to the bathroom without the aide seeing her butt, and after sitting for 15minutes, she was successful.

Max is doing okay but is also having a bad day. He is also having a lot of pain and is on a Fentanyl PCA pump. He is groggy and cranky but, according to his dad, is looking better. His labs are a little abnormal but beginning to stabilize. Their main concern right now is his low platelet count. The docs are assuming that this may be caused by one of his medications which, hopefully, is an easy fix.

So keep the prayers going because they have definitely made a difference. Hopefully, Beth, Tim and Max have a more restful night.

Thank You

2010-07-08T19:02:00.003-04:00

Thank you for all your continued love and support. We are truly blessed to have such great friends and family. I also wanted to let all of you know how strong of a woman Beth is. She has undergone so much for Max. I LOVE AND ADORE HER MORE THAN I CAN EVER SHOW. Thank you so much for your support and prayers.

Love you all, Tim Livingston

Updates on Transplant

2010-07-08T09:41:00.011-04:00

Hello everyone!
This is Allie, ( Beths best friend) I will be letting you all know as updates come about. Currently Beth and Max are in the operating room and thats all i got, so keep those prayers coming!

10:30am - Beths kidney is out and Maxs is almost out.

11:45am - Beths healthy little kidney is out and being prepped to go into mighty Max! It is estimated that Beth will be out of surgery in about an hour and a half. It's almost time for the switch-a-roo!

12:35pm- Beth is heading to recovery. I hear her surgery went great. They are halfway through sewing Maxs new kidney in! things are also going well with his surgery currently. Keep on praying!

1:15pm - Dr. Ben says the kidney is in, and its pink! Tim just left to go see wonder woman in recovery!

*Beth is heading up to her room. Max is still in surgery. The kidney is good, and it already peed! I think Beth is feeling a bit rough.

3:30pm - Max is in the process of getting closed up now. Doctors should be out in about an hour to talk to Tim. They need prayers for speedy recoveries!

4:16pm - Max is out and in recovery. Everything went great, and nothing but good news on our end! continue prayers for quick recoveries!

Beth was right in her last post, today WAS a good day. Thanks to everyone for all the prayers, they seemed to work! They were in awesome hands today!

It's going to be a good day

2010-07-07T22:18:00.005-04:00

It's here. The day that we have been anticipating for the past 2 years is finally here. We are so excited to have this day behind us and for Max to get to experience what it's like to be a "normal" kid.

Through this journey we have gotten to know a lot of people. People that have changed our lives forever. We have learned lessons that will have an impact on us for the rest of our lives. We are not regretful that we were chosen to parent a child with ESRD. We are blessed. Max is who he is because of the hand that was dealt to him. Max is a beautiful little boy on the inside and outside. He puts a smile on everyone's face that comes in contact with him. He is an extraordinary little boy that has the potential of doing great things when he grows up.

I have had the honor of meeting a few other kidney baby mamas in the past few weeks. They are all from Tennessee and two of them have chosen to come to Cincinnati for their little ones transplants. Laura's little girl, Summer, has been put into our old slot of July 27th. Everything happens for a reason and I feel that Max's transplant was moved up so that Summer could get her daddy's kidney without having to wait too much longer. Yvette gave her little boy, Brandon, her kidney about 8 weeks ago and both are doing beautifully. Yvette has come to the hospital to see both Laura and I just to make sure that we are hanging in there and doing well. She has been a blessing for me because she has already been through the transplant. She is answering all of my questions. She cries and laughs with me and tells me how awesome it is to see your child blossom with their "new" kidney. Yvette- thank you. Thank you for all that you have done for me in the past few weeks. I just met you but I feel like I have known you my whole life. You truly are a blessing to us and we are honored to have gotten to know you in real life rather than just over the internet. Thank you.

We also need to thank all of you who are praying for us. The prayer vigil such a huge hit that it got extended to 48 hours rather than just 24. You all are amazing for doing this. It means so much that so many of you are out there praying for us. Whoever prayed for Tim and I to find peace tonight, thank you. The prayer was answered. My brother and sister-in-law came over with dinner, Max was cracking us all up and Yvette came to see us. It was such an enjoyable evening and we are at peace with what tomorrow will bring. We feel that this surgery is going to go well. We know that there will be complications, but they won't be anything that we can't handle. Max is a tough little guy and will pull through this. We have gotten this far. There is no way that God would end our journey now. Not after all that we have been through.

In 9 hours I will head down to the same day surgery area, get signed in, have an IV placed, get into my gown and wait for the life changing moment that we have been waiting so long for. At 7:45 tomorrow morning I will be wheeled into the OR for the third time in my life. The first time was the open fetal surgery that saved Max's life. The second time was on May 12, 2008- the day that Max was born. The third will be the second time that I have gotten the honor of saving my son's life.

Tomorrow is a new day. July 8, 2010 is the day that Max gets a chance at a new life. Tomorrow is going to be beautiful.

The Plan

2010-07-04T23:04:00.002-04:00

We have been so busy this weekend, but enjoying ourselves as well. We spent Saturday evening with family and friends at a river camp. Sunday has been filled with running errands and trying to get things together for the upcoming week.

I wanted to let you all know what the plan is for this week as we get ready for Thursday.

Monday- Max needs to have his PPD (TB test) read, so we wil be heading to CCHMC for this sometime in the early afternoon. There is talk about my whole family going to my Aunt's house around 2pm to celebrate and to see everyone before the big day. We are also going to Tim's parent's house to eat dinner with his family.

Tuesday- Max and I have an appointment at 8am at CCHMC to have our final cross match drawn. This is the final work up that both Max and I have to have before the surgery. These results will hopefully show that nothing has changed from the original bloodwork that we had at the beginning of this process. The doctors want us to hang around for the results. If Max's labs are wacky they will go ahead and admit him so that they can do 24 hour dialysis to get him good and ready for transplant. If they are good, we will be heading home for our last night before he gets admitted.

Wednesday- Max will be getting admitted sometime in the afternoon. My guess is around 3pm. I am hoping to get Max's hair cut in the morning :o) He will have a mullet if I don't.

Thursday- The BIG day! I am due to be at same day surgery at 5:30am. I will get my IV put in, get into my gown and wait for the doctors to come talk to me. The surgery is due to start around 7:45am.

I am still in shock that all of this is happening so quickly. I am on the biggest emotional roller coast ride of my life. I cry when I hear a sappy song on the radio. I choke up when someone hugs me because it's the last time they will see me before the surgery. I cry as I watch Max sleep at night. I cry just because I am thinking about everything that's about to happen. I can gaurentee you that I will cry when we hook Max up for his last dialysis treatment and I will ball my eyes out when I have to say goodbye to him as I head to same day surgery on Thursday morning. I am sure that I will cry while I wait in that tiny little room waiting for my turn to be taken back.

I am scared, anxious, nervous, excited, scared, overwhelmed and scared. I am scared mostly for Max. I have to be honest, I haven't even thought about my part in this yet. My biggest concern right now is Max. I need him to pull through this. I can't lose him now- not after all that we have been through. I am confident that the doctors wouldn't be doing this if they didn't think he would survive. He will pull through. We will pull through this. I am not naive. I know that there are going to be complications. We just pray that they are minor. Please pray with us that all complications are minor.

We wouldn't leave you guys hanging all day without any updates, so my best friend, Allie, will be updating the blog and Facebook throughout the day Thursday. If you have any questions please don't hesitate to ask them. She will be there all day supporting us and to keep you all informed.

I will post again before the surgery. Please keep praying for this to go well.

My cousin Jessica is putting together a 24 hour pray vigil starting the hour of the surgery. If you would be interested to take part in this please email her at Jessica.Wells@FMR.com. It sounds like each person can choose which time they would like to do. The times are in half hour intervals. Thank you to everyone who is taking part in this. It means the world to us to know that there are so many prayers being sent up for both Max and I.

2010-07-02T16:22:00.004-04:00

Well we got new information today. News that rocked my world for the better. The news first brought fear, then excitement. It brought tears and a smile that I couldn't wipe from my face.

The unfortunate part was that I didn't get to hear the news from Dr. Ben and Dr. Brad. It was their news to share with us and someone spilled the beans before they got the chance. When I saw Dr. Ben and Dr. Brad walk through the door, I could see their excitement. When they found out that we had already heard, their faces sank. I could see the excitement leave them. They were robbed of this fantastic opportunity to tell me this exciting piece of information. It broke my heart. They confirmed the news I had heard earlier in the day and gave me the details. They both walked out of the room to get some other details taken care of. Dr. Brad walked in to talk to me about a medication that Max will need to start tomorrow and he had this look on his face. A look of satisfaction. A look of pride. It was at that moment that I thought I saw Dr. Brad's eyes get glassy. He turned to me and said this is a very good thing. He walked out of the room and I started to cry.

Today we got the news that this coming Thursday, July 8, 2010 at 7:45am Max will be receiving my kidney.

2010-07-02T09:30:00.001-04:00

There was a little confusion with the two posts below that have similar titles. They are different posts. Sorry :o)

Max's treatment went "swimmingly" last night. I am still waiting to hear from the doctor's on what the plan is and if we get to go home today. I will let you guys know as soon as I do.

Thank you for all of your thoughts and prayers.

25 days and counting...

Today's Plan

2010-07-01T16:49:00.002-04:00

Okay so we finally have a plan and have put it into action. Max just finished a four hour trial of PD to see if it would work on the cycler and it did. So, we are going to hook him back up around 7pm for his 12 hour treatment, just like we would do at home, to see if it will work. This is when we usually find ourselves having issues. We are hoping that if we start the treatment while Max still awake, we can get through the problematic first 2 or 3 cycles. If this fails, we are going to try the hospital's cycler to make sure that it's not our personal one that I brought from home.

Other than that, we all still think that his fill volumes are too low for the machine's liking. We have to move very slowly to get him back up to his fill volume of 480mL because of the 2 surgeries that he had only 10 days apart. He went up to 280mL this afternoon and I am hoping that they will increase him to 300mL tomorrow. The sooner we get that level up the better. We shall see if that really is the issue.

We have totally ruled out that it's not the catheter, thank goodness. It's either the machine or his fill volume.

Keep those fingers crossed that we figure this out so that we can go home and enjoy the holiday weekend.

Another terrible, horrible, no good, very bad week

2010-07-01T08:40:00.004-04:00

We have been in the hospital since Monday morning and there is no light at the end of the tunnel.

Max's surgery went very well on Monday afternoon and he pulled through like a champ. We tried out the catheter on Monday night with confidence that it was going to work and that we would be discharged on Tuesday. Well it didn't work. We are having the same problems that we had with the last catheter- it fills beautifully, drains well until you get half the volume back and then stops. So we had to end his therapy early, again. It was 3am by the time we got him disconnected and I was able to finally get some sleep. 6am comes around and a surgery resident comes in, turns on the biggest and brightest light that the room has to offer to look at Max's site. Well good morning to you too jerk. We were thankfully both able to fall back asleep for a couple more hours.

Tuesday was possibly the worst day thus far. Everyone wanted to try a manual PD but because it takes a lot of man hours, the nurses on the floor can't do it. We had to go to the PICU. I told the doctors that I knew how to do it since Max went home on it for a week when he was 5 months old. They all said that I couldn't do it because of what the policy says. So they put the orders in for us to be transferred to the PICU. Four hours later we were on our way. we got to the PICU and all hell broke loose. The nurse immediately started throwing a fit because there wasn't a nurse with Max and because he wasn't on any monitors. Then she threw a fit because Max was screaming and holding is breath because he had just woken up and was in a new environment with a new nurse who he had never seen before. So when she hook him up to the monitors, his sats were in the 50's. She freaked out and called the response team. I told her that he does this and that he will come up on his own. She refused and started shoving the mask in his face. I told her that the mask pisses him off even more and she wouldn't listen. I took it from her and told her that I would do it. I held it near his face so that he was at least getting a little oxygen and he ended up coming up on his own. This nurse was just flat out rude to both Max and I. She was then telling Max to sit still while she tried to get a blood pressure. I wanted to freaking punch her. What screaming two year old is going to sit still for a blood pressure? She went straight into the rules of the PICU- the parents aren't allowed to do any of the care, we aren't allowed to do the dialysis, vitals every hour, assessments every two, no food, only 3 visitors at a time, etc. I was fine with the "rules" but the way she said them made me even more ticked off. Just flat our rude! She then proceeded to tell me that she doesn't even know why we are here because they don't know how to do the manual dialysis either. I looked at her and said you have got to be freaking kidding me. By this point I was on the verge of tears. She finally said that she was going to leave us alone and let Max calm down. It's a damn good thing so left us alone for a bit. I needed to calm down myself.

The manager eventually came in and said, "So I hear that you have had a rough transition." You think? She apologized and told me that they were looking for the policy to see if we could go back to the floor and have me do the manual dialysis. About an hour later they came back in and said that the policy is a mess and needs to be rewritten. The first paragraph says that the nurses on the floor can't do the manual because of the man hours it entails. The paragraph right below that says that they can if they have the resources. In this case, I am the resource. I am infuriated at this point. WHY wasn't the policy pulled out and read before we went through the trouble of being forced to the PICU with this extremely rude nurse? I was absolutely infuriated at this point. The decision was finally made for us to stay in the PICU for the night on manual dialysis and we would be transferred back to the floor on Wednesday. Fine. We can deal with one night. Tim decided to let me go home and sleep since I was running on about 4 hours total. Thank you Tim.

Manual dialysis went beautifully throughout the night, so they wanted to try him on the cycler before we got moved back to the floor. We hooked him up to a four hour cycle and it too went beautifully. Max slept through two of his drains and it still worked. That was my biggest concern, since that is when we have the most problems. We were then transferred back to the floor with the nurses that we have grown to know and love. We got situated, again, and took Max for a walk. It was absolutely gorgeous yesterday so it was very nice to get him outside to enjoy it for a bit. We got back to our room and waited for the orders to be put in for the dialysis. I got to go home again to sleep while Tim stayed with Max.

That brings us to today, Thursday. I called Tim this morning to see how things went and he said that they had to stop it after his third cycle. The first drain is what ruined the treatment. The first drain left him with a negative UF of 114. His second drain went much better, but was still negative about 10. The third drain went just as well as the second but because he was already at a high negative UF the machine couldn't go any further. It's a safety mechanism that prevents over fill of the fluid.

I have been here since 7:45am and I am yet to see or hear from anyone with what the plan is. It's so frustrating that it takes them hours to decide on what to do.

I will update as soon as I know what the plan is.

It's been a terrible, horrible, no good, very bad week

2010-06-27T22:39:00.003-04:00

I really don't even know where to start to explain to all of you how absolutely terrible the past week has been. Last Friday, Max underwent his 13th surgery to replace his catheter. He spent the night in the hospital and was released on Saturday evening. Saturday night's treatment went okay. He had a lot of alarms, but we made it through the entire 12 hours. Sunday night was a totally different story. I couldn't get him past his second drain, so I ended up having to end his therapy very early. Same thing happened Monday night. So on Tuesday we made a trip to Children's Hospital. They put TPA in his line and it seemed to be helping, so we headed home. To our disappointment, the treatment ended the same as the two previous nights. We headed back to Children's on Wednesday morning and there we stayed. They did another dose of TPA and the catheter drained beautifully. We hooked him back up to his dialysis that night and couldn't get him past the second drain again. We ended the therapy early for the forth night in a row. Everyone, except for me, was ready to send Max back to the OR. I asked the doctors if we could try one more thing and they all agreed. It worked! They did a 6 hour run Thursday morning while we were at the hospital, and it went beautifully. We got discharged Thursday evening. When we got home, we hooked Max up to his dialysis, and you wouldn't believe it, but it did not work. I had to end his therapy after the second cycle for the fifth day in a row. I didn't give up hope just yet. I was trying to figure out what was different from the treatment in the hospital vs the treatment at home. Everything was the same, except for one thing. Max was awake at the hospital and asleep at home. So on Friday morning, I called the PD nurse like I was instructed to do and told her that I wanted to try one more thing. If it didn't work, I would bring Max right in. Everyone agreed, so I started my little experiment. I hooked Max back up to his dialysis while he was awake and moving around. Wouldn't you know, the dialysis actually worked. For 12 straight hours, the machine put fluid into Max's belly, dwelled it for an hour and drained him perfectly. Thank God!

So since Friday, Max has been hanging out in his room attached to a four foot leash. He has done remarkably well. Today we decided to bring his machine down to the living room so that he could hang out downstairs with everyone. Things were going perfectly. Max was hopping all over the place and ended up getting himself wrapped around his machine. When we went to unwrap him, we didn't see that the tubing was pinned under the machine, so when we picked him up, his catheter got yanked out of his belly. Max started screaming, fluid starting flowing from the exit site and I panicked. I ran outside to get Tim and then I rushed to call the fellow on call, that thankfully ended up being Dr. Ben. I was running around while on hold packing our bags and trying to get everything that we would need during our stay at the hospital. I finally got a hold of Dr. Ben and he told me to keep sterile gauze on it to catch the drainage. Tim was already on that, so I asked what else we needed to do. He told me that he was going to call the attending to see if we needed to come in and if we needed to start antibiotics. Ben called me right back telling me that Dr. D wasn't too worried about infection and that we didn't need to come in. I was blown away. I thought for sure that we had just landed ourselves into the hospital for the next few days. We spared our Sunday evening in the hospital, but we will be going in tomorrow morning for Max's 14th surgery.

We are due to arrive at CCHMC at 6:45am to get Max admitted. From there we will head to our room, answer 1000's of questions that I have answered over and over again, get Max's labs drawn, an IV put in and fluids started. We will then start the dreaded wait of when Max will be called to the OR to have his catheter replaced. It could be anywhere from 9am to 9pm. We are considered an add on, so they will fit us in when there is an opening.

And that ladies and gentlemen is what we call a terrible, horrible, no good, very, very bad week.

Hope all of yours was better.

DONE

2010-06-22T23:51:00.003-04:00

I don't feel like "done" is a strong enough word to describe how I feel at this point. I am no longer pushing for transplant because it's a convenience to us, I am pushing for transplant to save my son's life. Dialysis is not working anymore. I don't know what else to say to get everyone on board with the transplant.

We spent almost 5 hours at the hospital today. Max had labs drawn, a 300mL flush that only drained 150mL, an xray to check catheter placement, TPA dwell, another 300mL flush that drained 250mL and another TPA dose put into his catheter. Everyone thought that this was it. It was going to work. I, on the other hand, wasn't so confident. I was right. We got home and let Max have some time off of that God forsaken machine. After I woke up from my nap, we started the process of hooking him back up. The next 38 minutes of dwell time seemed like an eternity. My stomach was in my throat. Something was telling me that this was not going to go well. 7 minutes before he was suppose to drain, I told God that this was His time to gain my faith back. He didn't. Four alarms went by and we had to bypass the drain. Negative 56. Dwell two came and went. Alarm after alarm. Negative 152. I finally called the fellow on call and I have to say that I was not happy when I got off the phone with her. I felt like she was telling me that she didn't feel like dealing with it tonight. She told me to go ahead and end his therapy, give him a dose of Kayexalate and call them in the morning.

I hung up the phone, walked upstairs into Max's room and lost it. I sobbed over my sleeping little boy for a good 30 minutes before I went to the floor and sobbed for another 30 minutes. I am scared. This is not funny anymore. The game is over. It's time to move forward. Max's body is obviously telling us that it's done as well.

I feel that the only thing holding us back from transplanting is that it's not convenient for the surgeons. Well, it's not convenient for me either, but I do it. I do it because I have to. It's not convenient for me to stop everything I am doing so that I can hook my son up to a machine. A machine that keeps him alive for another day. It's not convenient for me to have to take him to have a needle shoved into his arm every month. It's not convenient for me to have to hand him over to the surgeons for the 13th time. It's not convenient to have to change his clothes 3 times a day because his g-tube is leaking or because we can't find a diaper that will cover his vesicostomy. Life is not convenient for me either, but I do it.

But for now, I am DONE.

2010-06-22T11:04:00.002-04:00

I apologize for not updating sooner. It has not been a good 4 days since surgery. Dialysis isn't going well to say the least. We are not sure if it's the catheter, the low volume that Max is on, or fibrin blocking the catheter.

Needless to say, we are frustrated, exhausted and done with dialysis. I don't have the strength to do this anymore. Max has only had one good night of dialysis since Friday. We have had to end his therapys early because of all of the alarms. I only have one more idea and that is to move the transplant up. Max can't keep missing full dialysis treatments. We are going in for labs today to see how bad they have gotten over the past 4 days. They didn't look great going into surgery, so I am very worried about what they are now.

I could rant and rave about how I am feeling right now, but I won't. We'll just keep it at this: I am on the verge of tears all day every day, I am exhausted, I hate dialysis, my faith is gone, and I am scared for my child's life.

Please pray. I don't have the strength to do so anymore.

Exhaustion

2010-06-18T22:48:00.002-04:00

Everything with the surgery went well. The culprit was not anything on the end of the catheter, it was simply that Max has outgrown it. The catheter has been in place for two years now, so it makes sense. *Cheers to Dr. Lim for putting in a catheter that lasted so long*

Dr. Alonso ended up removing the old catheter and placing a new one. It's on the side where is g-tube is so it's a little crowded, but it will work. My only concern is going to be dressing changes with a leaky g-tube, but we will figure it out just like we have figured everything else out.

Max had the worst episode of breath holding that he has ever had. Once we got back to his room from the PACU, I pick him up from the gurney and he immediately started screaming. I quickly laid him in his crib and he started holding his breath. His eyes were huge and I immediately felt horrible because I knew that I hurt him. He held his breath to the point that his oxygen saturation drop to the high teens. They are suppose to be in the mid to upper 90's. He was as white as your computer screen. Naturally everyone, including Tim and I started panicking. Max ended up passing out on us 3 times. I was yelling at him to wake up, one nurse was trying to get his leads hooked up and the other one was shoving an oxygen mask on him. Someone in the hall was yelling for the resident and on the phone calling someone else. After a few minutes of this I finally stepped back into reality and realized that he was no longer pissed because he was in pain, he was pissed because they kept shoving the mask in his face. He hates that mask. I mentioned it a couple of times and no one really listened so I finally raised my tone a little and stopped the nurse in midair from putting it back on him. I calmly told her to not put it back on him. I asked if we could see what he did with just the nasal cannula and everyone agreed. Max immediately started calming down and within a minute or so his sats were back in the 90s. I feel terrible now on how I reacted to the nurse, but I had to do something because they were calling in the respiratory team and I was afraid they would intubate him. I totally understand why she was doing it and I told her that afterwards, but there is a time when you have to step back to figure out why the child is screaming. I did that and thankfully it worked. It was by far the scariest thing that I have experienced so far in this journey and I never want to experience it again.

Max was doing very well when I left this evening. He was living the life watching Barney and having his daddy drop water into his mouth from a straw. He was perking up and looking a lot better. The plan is to let him relax and heal for tonight and we will connect him to his dialysis for a few hours tomorrow to make sure there are no leaks. If all goes well, we will be home tomorrow afternoon.

As far as how Tim and I are doing- we are exhausted. Tim worked from 7am Thursday morning until 8am this morning. He only got an hour of sleep before I woke him up telling him that we were heading to the hospital and probably into surgery. Needless to say he took a 2 hour nap once we got situated into our room.

My exhaustion has finally caught up to me. I have been tired every day for the past month, but have kept going because I had to. I had a little man to take care of, but tonight, well tonight Max is in the fantastic hands of his nurse and daddy which means that I will have an uninterrupted night of sleep for the first time in a very long time. With that said...

Goodnight ladies and gentlemen. I will update tomorrow to let you all know how Max is doing.

Thank you for the prayers. They are greatly appreciated.

Weekend Getaway

2010-06-18T14:31:00.002-04:00

Tim, Max and I decided to spend the weekend at our second home in beautiful Avondale, OH at the last minute this morning. What this really means is that Max has been admitted to CCHMC and is scheduled to have surgery sometime this afternoon/evening.

Max woke up huffing and puffing this morning. I was very uncomfortable with it so I contacted Dr. Ben who told us to come on in. I went ahead and told him to get us a room because I knew Max wouldn't be coming back home tonight with the way thngs were going. Long story short, we are waiting in our room on A7 Central for Max's turn to go to the OR to take a look at his catheter. There is a chance they will have to replace it, but they will take a look first to see if there is omentum clinging to the end of the catheter.

Our guess is that he will be in house until the end of the weekend at least. If the surgery goes well and he tolerates dialysis we will be out of here sooner rather than later.

Please continue to keep Max in your prayers. I will update as soon as I get the chance. If you are on Facebook, I am doing updates there more frequently since I can do them on my phone.

Have a great weekend everyone!

39 Days

2010-06-18T00:01:00.003-04:00

We are officially in the 30's as of 3 minutes ago. I have been getting asked a lot lately how I am doing with the surgery coming up and my first response is that I am very excited and that I can't wait. To be honest, I would be thrilled if the doctors decided that instead of taking a look at Max's dialysis catheter on Tuesday they would just transplant him. I will not be a happy mama if they have to replace this catheter when we are only 39 days from transplant. It's so frustrating that we are so close and now his catheter decides to stop working.

Have I mentioned how much I dislike dialysis? We have had a good run at it for the past two years, but I think Max's little body is telling us that it's ready for a new kidney. It's been a very long and bumpy journey, but I am not disappointed in the least bit to be finished with it. The day that I pack up the cycler to send it back will be a day to celebrate. It will be very tempting to not have a big ceremony on the Purple People Bridge as we drop that machine into the Ohio River. I don't think the insurance company would like that too much, but man would it feel good.

The past month has been the most exhausting month of my life. I don't function well anymore. I find myself wanting to do nothing but lay on the couch while Max plays on the floor beside me. I have a list of things I want to do before transplant, but don't have the energy to do any of it. We are trying very hard to get out and enjoy ourselves before we dive head first into what will be the craziest month of our lives, but it's hard. This is where I am going to get into the part where I say that I feel so bad for Max because he can't do what a typical 2 year old does. My 2 year old doesn't talk or walk. While everyone else is out enjoying their summer we are very limited because of Max's inability to get around. Max is stuck in a stroller because he doesn't have the strength to walk. He weighs 28 pounds, so it's not like we can hold him all the time. He doesn't know that he needs to hold on while we carry him, so we carry 28 pounds of dead weight. Needless to say, that only last a few minutes before our arms are shaking and we need to put him back into his stroller. It's not fair to Max. He gets so frustrated because of his limitations. You can tell that he wants to do it so badly, but can't. I want to take Max to the aquarium but they don't allow strollers. What kind of attraction doesn't allow strollers into their facility? There is no way in hell that we could carry him through the entire aquarium. He won't be able to do this for quite some time post transplant because of his immune system- or lack thereof.

So to answer your question, how am I doing with the surgery coming up? I am thrilled to be able to move on with our lives. I am finished with dialysis and dream about the day that it's all out of my house. I can't wait for Max to be able to live a "normal" life like all the other 2 year olds out there. I want to sleep through the night again. For everyone that says it's like having a newborn- it's worse. I can't pick up the cycler, feed it and rock it back to sleep. Nope, it just keeps yelling at me telling me that the little boy it's attached to isn't draining. Not only is the cycler beeping at me, the oxygen saturation monitor is beeping at me as well. It's actually beeping at this very moment because Max is laying in his bed gagging so badly that he can't keep his sats up at the minimum of 90%. Oh the sounds of End Stage Renal Disease.

Anyone want to trade me places for a day?

39 days...

Surgery #13

2010-06-16T12:12:00.003-04:00

Well we almost made it to transplant without another hospital stay and surgery added to Max's very large medical record.

Max will be undergoing surgery yet again on Tuesday morning (June 22nd) to see what's causing his dialysis issues. He hasn't been draining well for about a month now. The only thing that we can think that could be causing the draining problem is that there is something wrapped on the end of the catheter that is blocking the fluid from draining. So, that explains why he is going into surgery.

I have to admit that I am kind of relieved that this is where we are going with this. As much as I hate that Max will have to undergo anesthesia yet again, it's a relief that we may be able to get a good nights sleep again. I don't remember the last time I slept through the night. I even woke up in the middle of the night while Tim and I were in New Jersey over the weekend. Habit I guess.

You read that correctly. Tim and I made the 10 hour drive to New Jersey this past weekend for Tim's brother's wedding. It was a Max free weekend, but I think I spent more time on the phone with doctors, nurses and my mom than I did enjoying myself. Don't get me wrong, I did have a good time. The wedding was beautiful and I didn't fall walking up the stairs to do my reading and the reception was a blast (thank you Amaretto and Coke)! We did have a good time but it was nice to get home so that we could take care of Max and the issues that he was having.

Anyway, if you could please keep Max in your prayers that this surgery goes well. I am also asking for you to keep Tim and I in your prayers. I am to my breaking point and don't feel like I can do this anymore. Please pray for our strength and that we make it to transplant without anymore hurdles to jump over.

54 Days

2010-06-02T22:33:00.003-04:00

So I have had a loss of inspiration here the past few weeks, if you couldn't tell by my lack of posts. I am still not to the point of really knowing what I should write about tonight, but I felt it was time to post something so that all of you fantastic people know that we are all doing well. We have had a month of ups and downs here in our family.

I will start with the one that needs the most prayers. My cousin Theresa went to the doctor at the end of April for some headaches that she had been having. Her doctor sent her for an MRI and they found a tumor behind her right ear. The tumor is in the dominant hemisphere of her brain- where her speech function is located. Theresa has another MRI on June 10 and she will then followup with the neurosurgeon to see what the next step will be. The biggest concern is whether doing a biopsy and/or removing it will affect her speech. So I am asking all of you prayer warriors out there to please pray for Theresa and her family. If you could also pass this request on to those that could send up an extra prayer, I know that Theresa would appreciate it.

Another request is for my Aunt Michaelle. She recently had a heart attack and is still gaining her strength and endurance back. If you could please keep her in your prayers as she begins a new and healthy lifestyle.

Okay, I think that is it for the not so good news going on in our lives. Unless you want to consider the love/hate relationship that I have with dialysis right now. The only love part of this whole thing is that it's keeping my son alive. Oh should I get into why I hate dialysis? I think I should, because I need to vent about it. I know that no one out there will fully understand my frustration, but here it goes. If I hear one more beep, beep, beep in the middle of the night I think I might go insane. No wait. I know that I will go insane. Oh how I dislike the "cycler." Her and I are going to have a big old fight once Max gets his new kidney. To sum this up in a nut shell, Max isn' draining well at all. All of you other dialysis baby mama's out there know what I am talking about. We are ending up with negative UF's- which means that Max is holding onto the fluid that we are putting into his belly. This also means that Max gets short of breath a lot easier than when he drains well. This is what caused him to be hospitalized back in April. The only thing saving Max from respiratory distress is the heat. If he isn't breathing too well, we take him outside to sweat the extra fluid off. It works way better than sitting in a hospital room with machines beeping at us all day. The other bad thing is that I haven't had a solid night's sleep in about a month. I have slept on Max's bedroom floor a couple of nights just so that I didn't have to walk from one room to the other. Needless to say, I am exhausted. The only thing keeping me going is that we are down to less than 2 months before all of this is behind us.

Speaking of the transplant, I cannot wait!!! I am not nervous, I am not scared, I am ready. I am going to skip down the hallway of the same day surgery area at 5:30 in the morning on Tuesday, July 27th. I will sit there with my arm held out while my IV is administered with a big smile on my face. I will put my hospital gown and cute little surgery hat on with pride. Because in 54 days, I get to save my son's life, again. I get to give my son a chance at a life that he has yet to experience as a 2 year old. He and I will proudly show off our battle wounds. Our proof that miracles happen and that he is one of them. On that day, nothing else will matter. The world as we know it will stop. I will hug and kiss my husband and son goodbye as I am wheeled into the OR. I will lay on that table with pride as I quickly fall to sleep.

I try to picture what it will be like in the recovery room. Will my kidney already be pumping urine out of my little boy's body by the time I wake up? Will we know right away if everything is looking good? Who will be there with me when I wake up? How long after I go to my room will Max still be in surgery? The unknown answers to all of my questions. It is up to God now. I am finished worrying about the unknowns. We won't know until we try. God knows what will happen and I am at peace with Him knowing and not telling me. We are in God's hands and He will pull us through this. Max and I will survive and we will be better people because of it.

In 54 days, there will be no more dialysis, no more monthly deliveries of 16 boxes of fluid, cassettes and drainage bags. No more cycler- which means no more beeping in the middle of the night. No more dressing changes. In 54 days, Max will be free.

54 days is coming very quickly.

Happy Birthday Max!

2010-05-11T23:44:00.002-04:00

Dear Max,

It has been two years since you entered this world fighting for you life. Your daddy and I heard the slightest of whimpers when they pulled you out of my belly and handed you to the NICU team that was standing by. We only got to see you for a second before they wheeled you out of the OR in an incubator headed for the NICU at Good Sam. I didn't let the fear of the unknown take that moment away from me. I held onto the sound of your first cry as I was wheeled into the recovery room. Daddy came to the NICU to see you while nana sat with me. After an hour or so, it was my turn. They pushed my bed into the NICU and maneuvered it around all of the isolates that held the tiniest of babies. We finally made it to the very back corner of the room and I saw you. My heart melted into a puddle of mush when I saw the beauty of my son laying in the isolate. I didn't let the fact that you were on a ventilator scare me. You were alive. You were breathing. You had a heartbeat. This was our moment. When a mother meets her child for the very first time. You were beautiful. You were mine.

I am so blessed to have been chosen to be your mommy. You have brought so much happiness into my life. The past two years have been the best in my life and I can't wait to see what you bring to this world in the years to come. I love you kiddo. Happy Birthday!

All my love,

Mommy

At the ago of two:
You are getting into everything.
You are standing with assistance and are taking steps with Mr. Dan.
You are pulling up to your knees.
You are drinking from a straw cup without assistance.
You know the colors blue and yellow.
You are signing for "more" "want" "help" "play" "drink" "please" and "thank you"
You know most of your body parts (when asked where your nose is you stick your finger in it and when asked where your feet are you put them in your mouth- you start giggling as soon as you do it).
You can say "bye bye" and make sounds for other words. You prefer to say "ah" for everything but if you really concentrate you can say other things.
You are very stubborn (just like mommy and daddy).
You throw temper tantrums when you don't get your way or when you are told no.
You hold your breath if you get really mad.
You love Barney and Friends.
You know he motions for the song "If You're Happy and You Know It."
You are starting to mimic everything you see.
You give the best hugs and kisses.
You are very hard to get down for a nap.
You still love your blankie.
You love being outside.
You are a beautiful little boy on the inside and outside.

In honor of Max's 2nd Birthday, we have put together this video to share his life with all of you. We hope that you have enjoyed him as much as we have.

Max is turning 2. from Rick Neltner on Vimeo.

This Just In:

2010-05-04T11:58:00.003-04:00

July 27, 2010 is the day that our lives will be flipped upside down!

I just called the transplant coordinator asking if she had heard anything about the July dates that were still up for discussion and she responded, "Oh I thought I called you!" Well no you didn't but what's the word? "You are set for July 27th."

And this ladies and gentlemen gets a very big WOO HOO!

This means that we only have 84 more days of dialysis! Oh I can't even imagine the excitement of not having to hook our son up to a machine every night!

This means that I only have 84 more days to loose the 5-10 pounds that have been hanging around on my thighs.

This means that in just 84 days, I get the privilege to save my son's life. To give him a chance to be the 2 year old that he deserves to be.

In 84 days our lives are going to change for what we all hope will be for the best.

Let the count down begin...

A Day Out

2010-05-03T12:26:00.003-04:00

Tim and I were able to get a day out this past weekend. My cousin Andy got married on Derby Day. The wedding was at 2pm followed by a Derby Party and then the reception. It was a great time and Tim and I enjoyed our day "off." Max was in fantastic hands and when we got home we had nothing to do but go to bed. Thanks ladies!

Here are a few pictures from our day:

Most of the ladies in our family with Grandma Maddie at the Derby Party
Tim and I at the Derby Party
My brother Bob and his wife Ashley
Ashley and I at the reception

It was a great time and we are so thankful that we got to be apart of it. Congratulations Andy and Elisabeth! Have a great time in Italy and Greece!

2010-04-27T21:55:00.002-04:00

I think our little man might have a stuffy nose...

...but gosh he is so stinking cute!

I love him to pieces.

It's GONE!

2010-04-27T00:52:00.002-04:00

My cyst has gone away! I am so happy to have gotten the news that I got today. Of course the ultrasound hasn't been officially reviewed by my doctor yet, but the tech could see the fear in my eyes so she said "honey, you have been worrying over nothing for the past 5 weeks." It took me a second to realize what she was saying but when I finally came to I excitedly asked her if it was gone. Her response was, "There is no longer a cyst on your ovary."

That was music to my ears.

*Big Sigh of Relief*

Follow Up Ultrasound

2010-04-25T22:10:00.002-04:00

My follow up ultrasound is tomorrow afternoon (Monday) at 1pm. I am extremely nervous about what they are going to find since I am having a few more symptoms of having a cyst. I am still feeling great, but have had 2 new symptoms that have shown up in the past week.

I probably won't know anything tomorrow but I am going to try to get the ultrasound tech to give me some ideas of what she has or hasn't found. We'll see what happens.

Please say a quick prayer that this cyst has not multiplied and that it has either shrunk or gone away on it's own.

I will let you all know the results as soon as I know something.

Thank you everyone for keeping our family in your thoughts and prayers.

Open House this Saturday and Sunday from Noon until 3pm

2010-04-22T09:56:00.002-04:00

Hey Everyone!

I just wanted to spread the word that we are having an open house this weekend from noon until 3pm. We really need to get this house sold so if you know anyone looking for a first time home or someone who is wanting to downsize please send them our way. If you want further information you can email me at Livingston318@yahoo.com.

Thank you!

August 17, 2010

2010-04-16T12:47:00.002-04:00

I got a call today from the transplant coordinator letting me know that Max's transplant date has been set. She told me August 17th. I have to admit though that I was far from excited to hear this. I as nicely as I could ask what happened to July. She told me that they are having a hard time getting all of the surgeons lined up for July but that there are two days that are still in question. She told me that she would continue to see if we can get one of those two days.

I know I am being a pain in the ass, but we were told at the beginning of this whole process that one of the benefits of having a live donor is that we can schedule the surgery for when it works best for us and Max. So why do we want July? Our primary reason is so that Max has time to heal and adjust to his new medications before flu season hits in October. Max's immune system is going to be extremely low post op and we are wanting to give him that extra time to recoup. We also have the chance to go to Florida with my family in October. Obviously we can't commit to anything until we see how Max is doing, but we know for sure that we won't be taking him that far away so soon after transplant if it's to take place in August. This is on the bottom of our list for importance, but it would be so nice to get away and celebrate the new life that Max has been given.

Please don't get me wrong. I am so happy to finally have a date on the calendar, but it's so frustrating that we were told June but got pushed back to July and now we have yet again been pushed back to August. That's another few weeks of dialysis. I know that doesn't sound like a good enough reason to be upset about it, but it is. We are so ready for this to be over and for Max to have one less tube coming out of his belly. We are so ready to be able to just lay Max down for bed and be done with our bedtime routine. I am so ready to not have to weigh him, get a blood pressure, unhook and hook him up to that machine twice a day. The ability to not have to worry about getting home at a very reasonable hour so that Max isn't hooked up until noon the next day. Our list of babysitters will grow by a lot since we won't have to get someone who knows how to hook him up or if Tim and I go out we don't have to cut our date short because we need to get home to hook him up. Oh how we long for the freedom from dialysis. It's a day we have been waiting for for two long years and it just keeps getting pushed back further and further away.

So for now, August 17, 2010 is the big day. I will let you know if anything changes and we luck out with a day in July. Keep your fingers crossed.

Max is doing well

2010-04-15T07:57:00.002-04:00

Just wanted to post a quick update to let all of you know that Max is doing very well. Dialysis went great on Tuesday night. We were able to pull off enough fluid to get him off of his oxygen yesterday morning.

He had labs drawn yesterday and the results were better than they have been in awhile. His BUN (level that indicates how much urea is in his blood) dropped from the 60's to 43 with his new dialysis prescription.

Maybe the whole hospital stay was a blessing in disguise.

We will be going back for Max's clinic appointment on Monday. They will be doing a different test (Kinetics) at that point to see how well the dialysis is working. He will have to have another blood test done on Monday which is a bummer, but he is tough and will pull through just like he always does.

Enjoy the rest of your week and weekend! We will keep you posted on how things go on Monday- including how much he has grown!

We're Home

2010-04-13T14:30:00.002-04:00

He is on a little bit of oxygen and sitting with a monitor attached to his toe, but we are home. I am so tired, but feel so guilty sitting in the house on a beautiful day like today.

Maybe a little cat nap will get me motivated.

Thank you for all of the thoughts, prayers and concerns. If means so much to us that all we have to do is post something on here to get all of you wonderful prayer warriors set on a mission.

Thank you.

Free pass to A7 Central

2010-04-12T23:41:00.005-04:00

Max is at Children's right now. He woke up this morning looking like he had just finished running a marathon. I was hoping that his breathing would ease up a bit after I got him out of bed but it seemed to get worse, so I cancelled all of our plans for the day and called Dr. Ben instead. That landed us a free pass to CCHMC's A7 Central floor. It wasn't Dr. Ben's fault this time though. The attending that was on today didn't feel comfortable sending him home with all of the retractions he was having so she wanted to admit him for observation.

Of course as soon as we got admitted Max's breathing eased up and he thought we were here for playtime. I was sitting here on the verge of breaking down while Max sat in his crib and laughed all day long. He thinks it's hilarious. I just sit here and wonder why?

So what's the plan? Max is on a 16 hour dialysis run right now. He is actually half way through it at this point considering it's 11:45pm. He is doing very well and draining beautifully. He hasn't been having this luck at home and that's why we are here. Max's PD hasn't been going well for about a week now and we were having a difficult time getting him to drain all of the fluid, so he was ending up with a negative total UF (ultra filtrate). Over the course of a few days this was causing him to have a diffiult time breathing because of the extra fluid he was holding onto.

So, instead of his regular PD prescription of 12 hours and 8 cycles, he is doing 16 hours and 16 cycles. This means that the fluid isn't sitting in his pertoneal cavity as long which is preventing his body from absorbing it like he was at home. He would dwell for 1 hour and 7 minutes at home whereas here he is only dwelling for 37 minutes- then he drains. Does that make sense?

We were told that this should only be a 24 hour stay. I packed for 2 days just in case. There is a slight chance that there is something blocking the end of Max's catheter. If this is the case he will be going into surgery sometime tomorrow. I don't think this is what's happening considering how well the dialysis is going tonight.

I will keep you all posted on how the rest of the treatment goes and what tomorrow holds in store for Max.

Prayers are greatly appreciated. If you wouldn't mind asking the Big Man upstairs to give us a daggone break, I would appreciate it as well.

PS: Dr. Ben is on a mission to get us a transplant date ASAP. Hopefully we will be able to put this stress behind us very soon.

2010-04-09T12:50:00.001-04:00

I just found out this morning that one of our little dialysis buddies is getting her kidney today. Taylor has been through the ringer and back and is finally catching a break. Please say a prayer for her and her family today as she goes into surgery to receive her new kidney.

We are all praying for you Taylor!

I can't Sleep

2010-04-09T01:00:00.004-04:00

I have been tossing and turning all night. I can't sleep. I have tried sitting in Max's room hoping that the background noise of his machines would soothe me to sleep. I tried laying back in bed, but I find myself staring at the ceiling thinking about all that's going on in life. Now I am here at 1:00am trying to take my frustration out on the computer- or to whoever will listen.

I am sure you all are tired of hearing me complain about everything that's going on in life. I apologize for this. To be completely honest with you, I am sick and tired of what all is going on in our lives.

I want the transplant coordinator to have called a month ago with the transplant date. How stinking hard is it to get a few surgeons and an OR room on the doggone calendar? Max has had 12 surgeries and it has NEVER taken this long to get it scheduled. This is not an optional surgery people. Tim also has paper work to get sent in BEFORE the surgery. Do they not realize that if this is to take place in July that we are only 2 1/2 months away from the month of July? Do they not know that Duke Energy is not an organized company and that it will be a miracle if the FMLA paperwork is back in time for Tim to take the leave of absence? Do all transplant families have to wait this long to get a date? I mean come on! We have known that this surgery was going to take place for 2 years now. Get it on the dang schedule!

I want this house to sell before the transplant. I am so stressed out about getting the house clean and ready for a showing, if we ever have a showing. It's only been a week, I know, but I am so impatient when it comes to meeting a deadline. This house needs to sell ASAP so that I can alleviate 10,000 pounds of stress off my shoulders.

I want our doggone builder to call us back with our estimate. It's been 2 months since we met with him and still nothing! We are starting to really question this one.

Then we have this "complex ovarian cyst." I am over this stupid cyst! I am so tired of thinking and worrying about this thing. I am so tired of having the thoughts of ovarian cancer running through my mind. I am pretty confident that it's not cancer considering I don't have any symptoms, but there is still that chance and that's all I needed to hear. Hearing that there is a small chance has scared the crap out of me and now that's all I think about. On top of the 110 other things that are going on in our life right now.

Oh yeah. Dialysis. Oh how I hate dialysis. Do I want to get into why I hate dialysis? Well I will give you a little glimpse into the reason. Max was doing fantastic for a very long time. Well God couldn't let it continue, because that's not how our life works. All good things have to come to an end right? Well, dialysis has gone to crap. Max isn't draining well at all. We are having to put him on all 2.5% strength to pull the extra fluid off. What does this mean and why is it such a big deal? Because we only have so much 2.5% solution and well we are running out. We are not going to have enough fluid to get us to our next shipment. I don't know why it's not going well anymore. We meet with Dr. Ben and Dr. Brad on Wednesday, so we will discuss it at that time. We are keeping him from having breathing complications, but we are running out of what we need to do so. I am really hoping that it's not his catheter failing, because that will put us into an emergency situation. Oh how I can't wait for the word "dialysis" to be eliminated from our vocabulary, at least for 20+ years (fingers crossed).

I want to complain about things that I can't complain about on here. I want to throw myself on the floor and kick and scream until all that's going on in our life goes away. Everyone keeps telling me to not let this get to me. Not to dwell on it and let everyone else involved take care of it. That is so easy for someone who is not in the middle of it to say. I so badly want our life to be "normal." All I want is a freaking break from all of this crap going on in our life.

Why God? Why are you doing this? Why do you keep throwing on more things to our already stressful and overflowing load of stuff to deal with on a daily basis? You know the saying, "God only gives you what you can handle." Well God, I can't handle anymore. You are testing me and you are about to push me over the edge. I can't handle anything else, you hear me? I am DONE!

Please give us the "normal" life that we long for. Please free Max from the everlasting nightly and morning routines. Please give him the chance to be a regular kid. Please give Tim and I the strength that we need to get through the ever growing list of things going on in our lives. Please let the thing that we can't talk about on here end in our favor. God, I am begging you to please take some of this stress away from me. I can't be the best mommy that I can to Max because of all of this other stuff going on. Please take it all away so that I can focus on what's most important in life. Please don't ask me to take on more than I can handle. God, please help us get through this.

For Sale

2010-04-08T13:20:00.003-04:00

For Sale by Owner
$149,900

3 bedrooms
1 1/2 bathrooms
Newly remodeled Kitchen and Full Bath
Unfinished Basement
Close to AA Highway, Park, Shopping and Restaurants

Email me at Livingston318@yahoo.com for more information or to schedule a viewing.

Spread the word, please.

Huge Favor to Ask

2010-04-05T16:31:00.002-04:00

Hey Everyone,

We are trying to hunt down pictures from Max's benefit from last March. If anyone has anything that they can send to me we would greatly appreciate it.

You can email them to me at Livingston318@yahoo.com or you can get in touch with me and we will meet up.

Thank you all in advance.

TJ and Shannon- I already have yours. Thank you.

We have a walker

2010-04-01T12:56:00.003-04:00

Still Waiting

2010-03-31T21:56:00.002-04:00

I got a call early last week from the transplant coordinator letting me know that she was working on getting the transplant date set for July. She said that she was hoping to have something by the end of last week-- we are still waiting to hear from anybody.

I am trying to be patient, I really am. It's starting to get very frustrating though. We have a lot of things to get set into place before the surgery and not having a date is putting those things on hold. Tim needs to get his FMLA paperwork sent in and they won't process anything without the surgery date. So frustrating.

We are anxiously waiting for my second ultrasound that will be on April 26. I have been having a hard time falling asleep since I got the news. It's so hard not knowing what your body is doing-- whether the cyst is dissolving or getting bigger. I get a quick sharp pain in my lower left belly about every day. That scares me. I am hoping it means that this thing is going away and not growing. I still don't have any signs of having the cyst so that is encouraging, but it's still scary not knowing.

On a happier note, Max said "bye bye" today. It was as clear as day, but he only said it once and that was to the house. We say "bye" to everything when we leave. Bye toys, bye doggies, bye house. It was so cute, but the stinker won't say it again.

Now for the biggest news of all-- Max walked yesterday. All by himself! Okay so he used his walker, but he still walked!!! Not sideways or backwards either. Mr. Dan was so excited and I was on the verge of tears watching his little feet move forward. I was in shock and didn't grab my video camera, but I will get it tomorrow for sure.

Oh and our house is going up for sale tomorrow! We are busy busy around here trying to get things ready. We are packing things up to put in our storage unit, but also packing what we will need over the course of a year to take to my parents house. It's hard to determine what will be needed and what won't be needed. We're figuring it out though. We are so excited and ready for this process to get started.

So despite waiting for a transplant date, an ovarian cyst, putting the house on the market and moving-- life is good!

Complex Ovarian Cyst

2010-03-26T16:55:00.002-04:00

I just got back from talking with the doctor about my ultrasound results. I have a 4.3cm by 2.2cm complex ovarian cyst on my left ovary. Dr. D told me that "9 out of 10 times these cysts are benign, but there is a chance that it could be cancer." Not the words anyone ever wants to hear. The word cancer flashed before me and I immediately thought about my family.

I know that it's such a small chance but the fact that there is a chance at all scared the shit out of me. I am so scared and I have to wait 6 more weeks before I find anything else out. Dr. D wants to do a repeat ultrasound at the end of April along with some blood work to check for markers of ovarian cancer. She wants to wait to do the bloodwork because I am not having any symptoms (irregular cycles or pain). She told me that I shouldn't worry about this and that she isn't expecting this thing to be cancerious. Dr. D also told me at my early appointment that she wasn't expecting anything to show up on my ultrasound based on the exam that she did, so I am not feeling too confident at this point.

"It's normal for a 26 year old to have a simple cyst, but not a complex cyst." Also not encouraging. I am convinced that the ultrasound room that I was in is jinxed. That is the same room that we were in when we found out about Max's condition. Same ultrasound tech and same room. If I decide to stay with this practice if we have another child, I am requesting a new tech and a new room.

There is a chance that the cyst will go away on its own or burst. I am really hoping to feel that sharp, horrible pain shoot through my left side here really soon. I will then know that this thing has burst and that it is gone.

On the postive side, Dr. D said that she called me in because she wants to keep an eye on this thing. It's not something she wants to just let go and forget about. So that was encouraging to know that at least she wants to make sure it doesn't get any worse.

The next 6 weeks are going to draining on me. Everyone is telling me not to worry, but when you hear that there is a chance that you may have cancer, it's not something you take lightly or don't worry about. I appreciate all of the kind words and prayers. Please keep them coming as I await the next ultrasound and round of bloodwork.

"Complex cyst on left ovary"

2010-03-26T11:26:00.002-04:00

Those are the words I heard when my OB office called yesterday to tell me that my doctor wants me to come in to discuss the results of the pelvic ultrasound I hate last week. Needless to say, I am freaking out. I have heard that it's nothing to worry about and that they will just want to check it again in 6-8 weeks. But why would she want me to go into the office to tell me that? I am worried sick that something else is wrong. Was my pap abnormal? Was something else found that the nurse didn't mention?

The first thing I think of is ovarian cancer since my Aunt Donna passed away from it. I am trying to stay calm until my appointment today at 3:15. If you could add me to your prayer list for today I would greatly appreciate it.

Thank you everyone.

We've Been Bumped

2010-03-22T23:36:00.003-04:00

So it looks like everyone, besides the Livingston's, are going out of town in June-- so we have been bumped until July. The transplant coordinator called me today and said that an email has been sent to all of the surgeons. They are still trying to get a date where everyone can be at the same place at the same time so that we can do this transplant. She is hoping to have something set up by the end of the week.

Everyone here is fighting something. I have the allergy thing going on. Tim started feeling "blah" today. Max, well I can never explain what Max is up to. He ran a fever all day yesterday (Sunday). Had a very crappy dialysis night and desatted for majority of the night (or very early morning). He has a nasty cough but is now fever free. He's happy but not quite himself. His gtube is really bothering him, so I don't know if that has something to do with it or not. I can never tell with him. We immediately thing the worse, but it usually ends up being something minor-- thankfully.

We'll see how everyone is feeling tomorrow.

Have a great week!

10 more days until we put our house up for sale! We can't wait!

Spring is in the air

2010-03-18T15:53:00.004-04:00

What's better than a beautiful spring day and a very happy toddler? Getting pictures of the very happy toddler on a beautiful spring day!

Enjoy!

Happy Spring Everyone!

2010-03-15T23:00:00.003-04:00

WARNING: This is a long one

Max's urology appointment did not go like we were hoping today. It wasn't absolutely terrible, but it most definitely wasn't what we were hoping for. Tim told me that it's a good thing that I took the time to process the day before coming on and posting to all of you on how the day went.

I held it together while we sat in the exam room, but as soon as we got to the car I lost it. I thought the entire world was crashing down on us. I got home and plopped by butt on the couch and sat there for a few hours. We then baked cookies and ate them right out of the oven. That made it all better and I was ready to talk about the day and sort through the pros and cons of the news that we received.

I will start with Max's nephrology appointment. It went very well After all of Max's vitals were taken, he was kidnapped by the dialysis nurses so that Tim and I could talk about transplant with Dr. Ben and Dr. Brad. They told us that they felt now was the time to transplant since Max is doing so well. His dialysis is going very well and "his labs are perfect." So you may be thinking, why rock the boat? The answer is because it's much easier to transplant into a child who is "healthy" and doing well versus a child who's labs are all out of whack and they aren't in the best possible health. Make sense? So we all feel that since Max is doing well we should go ahead and transplant him before something happens and he ends up in an emergency situation.

I talked to them about some of the risks (fluid shifts and electrolyte problems) that we were informed about a year ago when we met with Dr. Sheldon. Dr. Brad said that he is not as worried about those risks because Max is much bigger than he was a year ago. They are still preparing for them so that they can be ready and on top of them if they happen though. They made it very clear that since Max is 12 kilograms now that this surgery is going to be easier than when we was only 10 kilograms.

Dr. Ben told us that he will be keeping a very close eye on him during the surgery. He said that even if he isn't the fellow on call that day, that he would be in and out of the OR so that he could keep an eye on Max and so that he can relay updates to Tim as often as he could. Dr. Brad also chimed in and said that they will be watching him very closely while he is in the PICU so that nothing will go unnoticed. This is exactly why we love Max's doctors. They go above and beyond their call of duty to make sure that our son is doing as well as he possibly can. I have always felt that Dr. Ben and Dr. Brad treated Max like he was one of their own children, but today, I saw how much they love Max. The way they look at him. The way they get excited with us when Max achieves another milestone. The emotion in their voices when we talk about the risks and benefits of transplant. Max is not just a patient to them. Dr. Ben and Dr. Brad are apart of Max's family and we are so thankful that we have had the honor to be working with them throughout Max's ESRD journey.

We left Dr. Ben and Dr. Brad nervous about the months ahead but confident that Max was going to pull through this other hurdle in his life.

Onto urology. My new joke is that if you need a good cry, visit the urology department at CCHMC. I am joking of course, kind of. I can't speak highly enough about the urology department, but geesh would it hurt them to be a little more positive when they speak with the families?

One of the first things Dr. Alam told us was that Max's bladder hasn't changed and that he won't be able to tolerate the break down of his vesicostomy. What does this mean? This means that Max's bladder is crap and that he needs a bladder augmentation. What does this mean? It means that Max will never be able to urinate on his own. He will have a mitrofanoff placed during the bladder surgery that he will cath himself through every few hours. Of course it's not the end of the world, but it's not what we wanted to hear. No one ever wants to hear that there child will never be "normal." Although, this is what's "normal" to Max, so he isn't going to know any different. The first thing I think about is how this is going to work when he goes to school. I can see Max being that kid who goes in and wants to show everyone his "battle wounds" and shows them how he pees. I know how cruel kids are. I was one once. I dread the day Max comes home crying because he is being teased for not being "normal." I have to say though that if this is the worst thing that we endure for the rest of this journey... I will be one very happy mama.

"This is going to be high risk mom" was the next thing that came out of Dr. Alam's mouth. This broke me in two. I hear this same exact thing every. single. time. I walk into that damn office. I know it's coming every single time, but it never gets easier hearing those words when it's being said about your child. This time was different though. This time Dr. Alam looked into my eyes with his saddened eyes and said those dreaded words. This time it hit me a lot harder. My heart broke into a million pieces. These words are exactly what break me down every. single. time. I walk into that office.

So what makes this surgery so high risk? Max's stupid bladder. I hate that bladder. I know that hate is a strong word, but that is exactly how I feel about that dang bladder. That bladder is what is making this surgery so much more difficult. What I am getting at is that Max will be getting his new kidney with his vesicostomy still in place. Why is this risky? Because the vesicostomy is a hole in his bladder. From the bladder is a ureter and at the end of the ureter is a "perfect" kidney. This ladies and gentlemen is a risk for infection. That infection has a direct shot to that beautiful kidney which increases his risk for rejection. To make it worse, Max will have a stint in place for 6 weeks post op. This is another source of infection. So not only does Max have one source he will have two that lead directly to that "perfect" kidney. So our plan of action is to irrigate (flush) Max's bladder with a strong antibiotic (gentamicin) 2 times a day until the stint comes out somewhere around 6 weeks post op. After that we will go back to the once a day routine that we are on currently. Max will also be on three antibiotics post transplant to prevent infection in those first 3 critical months after he gets his new kidney. Tim and I are also planning on taking a few extra precautions when we dialate his vesicostomy and change his diapers that will hopefully help.

So now onto to the positives that came out of the urology appointment. Dr. Alam still thought that Max was only 10 kilograms (22 pounds). When we told him that he was more like 12 kilograms (26 pounds), his face lit up. He said that his weight makes things easier on him and Dr. Alanso (transplant surgeon). He said that rather than an incision down the middle of Max's belly, they should be able to do it on the right side of his belly. They will remove his PD cath for 2 reasons. #1 is because it's on the right side and in the way of where they will cut and #2 is because it's just another source of infection. Because Max still has Grade 5 vesicoureteral reflux (don't worry-- I can't pronounce it either) into his right kidney that he will remove it at the time of transplant. Dr. Alam also feels that he will be able to implant the new ureter into a spot on the bladder that will not result in him having to move it during the bladder surgery. This is a big one. So big woohoo on that! It does look like he will have to break down Max's current vesicostomy and recreate it at the time of transplant, so boo on that.

Dr. Alam reminded us that this will not be the only kidney that Max has in his lifetime. He said that a kidney usually only last about 10-15 years, but only God knows what will be happening in 10-15 years. Tim and I think that they'll be growing kidneys in petri dishes by then. We also learned that Max will need several surgeries in his lifetime to make things how they want them. A little bit of a bummer, but we will deal with those when we get to them. One more piece of info that we found out today was that the bladder augmentation wouldn't be until Max is 3 or 4 years of age. They need one of his transplant meds to be at it's lowest dose before they will augment.

Dr. Alam had lunch with Dr. Sheldon last week and Dr. Sheldon was very please with how Max is doing. He was actually very surprised that we have gotten him this far without having to transplant. The two of them talked about Max and Dr. Sheldon thinks that our plan it the right way to go. It's comforting to know that even though Dr. Sheldon can't be here with us he is still apart of Max's care. We were told today that he was only a phone call away, so if Dr. Alam needs him during the transplant he will call him from the OR.

Alright, so I think I have bombarded you with more than enough information. Overall the day wasn't as bad as I originally made it out to be. This is our life. It's our reality and we have to grab it by the horns and run with it. Max can't live on dialysis forever and even though this surgery is going to happen how we want it to, we have to try. We have to do this for Max. This is going to be better for him in the long run so we can't be selfish. We have to do what's best for him. No one knows how this is going to turn out, but we will all kick ourselves in the butt if we wait and end up in an emergency situation. We have to try.

Please continue to pray as we are getting closer to the big day. There is a tentative date in place, but Dr. Alam wants to "bump it up" because he will be going out of the country on June 28th. I will let all of you know as soon as I know.

Thank you all for your love and support.

Phew- that was a really long one. Study up. There will be a test later :o)

On Our Way

2010-03-15T12:01:00.002-04:00

We will be heading out here in about an hour (1:00pm) to Max's follow up Nephrology and Uroogy appointments. The biggest one is the urology appointment which is at 3:45pm. This is the day that we will find out the results of Max's tests that he had done 2 weeks ago. I am still praying for a miracle but am at peace with what we probably already know. Please pray with us that we get all of our questions answered and leave feeling comfortable with the news that we get today.

I will post this evening or tomorrow with an update.

Thank you.

Beth

Confession

2010-03-11T23:16:00.002-05:00

Tim thinks I am super mom- he tells me this a few times a week. I look at him and smile every time he says this to me, but I have a confession to make- I am not super mom. It's during the night time hours that I sit and think. I lay in bed and hear my husband breathing slow and steady breaths right next to me. I lay in bed and hear the hum of Max's dialysis machine in the room next to mine. I lay in bed and have a very hard time turning my "switch" off. It's nights like tonight that reality hits me.

I think about life in general. Max's health. Transplant. Why Dr. Sheldon isn't going to be the one to perform the surgery. Life after transplant. Bladder augmentation. Life after bladder augmentation. Putting our house up for sale. Moving. Building our dream house. Moving again. Whether Max will be with us to enjoy all of the above.

I know I shouldn't think of the what if's. If I had a quarter for every time I heard that, I would be a rich woman. I am a worry wart at heart- always have been, always will be. I have always thought about the what if's and the risks that are involved with everything. It's just who I am and let's face it, the risks that are involved with this transplant are huge. We are risking mine and Max's life in hopes that it will make his life better. How are we to know that this won't make his life worse? We don't. We have to put all of our trust into Max's doctors, surgeons and God. God is really the only one who knows how all of this is going to turn out. I have prayed for some kind of sign that all is going to be okay. I am still waiting for that sign, but I am still keeping my faith.

I am afraid to think about life after June. I am so afraid to schedule a vacation for the end of summer or fall in fear that we will be going without our son. I am afraid to think about Max's big boy room. I have the playroom for the new house all planned out in my head, but am so scared that there won't be anyone to play in it. I am cherishing every waking moment with him right now for fear that I won't have him after the surgery.

I would be lying if I said that I don't want to do this transplant in June. I do. I am petrified, but so ready for Max to be "healthy." I want to get the machines and boxes of PD fluid out of our house. I want Max to want to eat versus us hooking him up to a feeding tube every 3 hours. I want Max to start walking, running, talking and playing like a regular two year old. I want to take Max to play dates and not get down because he is so far behind everyone else. I want to go on vacation without a truckload of medical supplies. What am I saying? I want to take Max on vacation, period.

The anticipation for the surgery is torture. I find myself googling things I shouldn't be googling. I read the transplant binder that I was given in the beginning in the evenings when I should be settling down to go to bed. Instead I am up into the early morning hours thinking and worrying about what life is going to be like. I have been in contact with a mama that I have met through a "Dialysis Babies" message board to ask her all of my questions. Her little guy, Logan, received his kidney 6 months ago at 18 months of age. She was kind enough to answer all of my questions and gave me permission to contact her with anymore that may come up. I know every child is different, but it's helpful to know that someone who was smaller and younger than what Max will be at the time of his transplant is doing fantastic with his new kidney. Thank you Jessica.

Three months from now, our lives are going to change. For the good or bad, we don't know. We trust our doctors, surgeons and nurses and feel that they will do what is absolutely the best for Max. He has come so far in his short 22 months of life. He has surprised all of us from the very beginning. God has not brought us this far to take him away from us now, right? We have worked so hard to get Max to where he is today. We have worked so hard to get to this point. We have cried and lost a lot of sleep to get Max to the point of transplantation. This has been our goal since Max was born. God most certainly wouldn't let us down now.

I am not super mom, but I am mom to a beautiful 22 month old little boy. A little boy who has taught me more life lessons than anyone ever could. A little boy who was brought into my life for a reason.

No, I am not supermom, but I am mom, and to that I am grateful.

One Test Result

2010-03-09T13:29:00.002-05:00

Max had a overnight oxygen study done at our home last week. This is a test that breaks down the percentages of where Max's oxygen levels are throughout the course of the night. So I just a called from Dr. Piccione who is Max's pulmonology fellow. The first thing he says to me is, "I have good news for you!" We LOVE hearing those words before we get test results. He went on to tell me that 99.5% of the time that Max was hooked up to the monitor he was satting above 90%. That means that only .5% of the time he was below the preferred level.

The next things he said were music to my ears. He told me that Max no longer needed to be on oxygen. He said that Max had come a very long way since they first met him last fall. Max's lungs have grown enough to sustain him without any assistance! This is huge!

Now there is some argument between Dr. Ben and Dr. Piccione on who is responsible for his growth. I have heard that Dr. Ben is very proud of Max's growth. I am going to have to give the credit to nephrology for this one- sorry pulmonology!

6 more days until we talk bladder test results and transplant. I am hearing that the transplant coordinator is working on getting our date on the books for the end of June. I can't believe that we are only 3 months away from the life changing surgery that we have been anticipating for the past 2 years. It's very scary and exciting all at the same time.

Have a great week everyone! Enjoy this absolutely beautiful weather!

Were back from Max's tests

2010-03-03T16:41:00.002-05:00

We had Max's urology tests today that will give us some answers as far as how Max's bladder is doing. He had a urodynamics, an ultrasound and a VCUG. Needless to say it has been a very long day.

He was not happy when they tried (and failed) to catheterize him during the urodynamics test. That was awful! He screamed (and I mean screamed like we were pulling his teeth) for 50 minutes before he wore himself out and feel asleep during the ultrasound. He slept through the first half of his VCUG and did great during the second half. The only news that I have is that he still has Grade 5 reflux into his right kidney and that his bladder holds about 50mL of fluid before he urinates. I know that the Grade 5 reflux is bad, but I wasn't expecting that to change. I have no idea what capacity a two year old's bladder is suppose to be, so I don't know if the 50mL is good or bad. It seems very low to me, but I have no idea.

On the bright side, we got to see some of Max's old buddies while we walked around the hospital for an hour in between appointments. They couldn't believe how big he has gotten. It was very nice to see some familiar faces.

We will have final results when we see his urologist on March 15th. Thank you everyone for the prayers. He did very well considering what we put him through today. I will keep you all posted as soon as I get some results.

We have another prayer request, please.

2010-02-26T10:35:00.004-05:00

I have another prayer request for all of you magnificent prayer warriors out there. My Aunt Dianne was given the opportunity to go to Haiti to work in the OR as a charge nurse. She agreed to the offer and left yesterday to head oversees.

I spoke with her last week and she was very nervous. She asked me to pray for her and I immediately thought that I would not only pray for her but I would have all of Max's prayer warriors pray for her as well. So here I am. I am asking all of you to please keep my Aunt Dianne in your prayers as she begins this new challenge in her life.

Also, Max has 3 tests next Wednesday that will tell us what's going on with his bladder. These are the tests that will tell us if a miracle has happened or if he still needs the bladder reconstruction. If you could, pray extra hard this weekend that God has performed another miracle for Max by improving his bladder significantly.

Thank you.

Have a fantastic weekend everyone.

Nephrology Appointment Update

2010-02-21T09:40:00.002-05:00

Max had his monthly nephrology appointment and labs on Wednesday. They are very happy with how things are going. The best news was that Max has hit the 10th percentile for his height! This means that he has gone from not being on the charts to being in the 10th percentile in about 4 months. So YAH for that!

His labs looked good, just a few medication changes. We also did what's called a kinetics test on the fluid that comes out of Max's belly during dialysis. This test tells us if he is getting good dialysis or not. The test came back looking very good! Another YAH!

The nephrologists and urologist (and I think some of the transplant team) meet once a month to talk about their ESRD patients. They met on Friday, so Dr. Ben called to tell me what was said about Max. Dr. Alam (Urologist) is pretty confident that Dr. Sheldon will not be back by this summer, which means that he will not be able to perform the surgery. We couldn't have all YAH's right? So as disappointing as this is, Tim and I are happy with who we have chosen to be Max's surgeon. Her name is Dr. Alanso and from what I hear, she has performed miracles on some of her patients. We like people who perform miracles! There will be several surgeons in on Max's transplant so we feel that he will be in very good hands. The way this will work is that Dr. Alanso will put the kidney in and attach the vessels. Dr. Alam will then step in and connect the ureters to the bladder. So it's going to be a joint effort.

As expected, I am very nervous now that things are moving forward. I have very mixed emotions. I am devastated that Dr. Sheldon will not be there but I am thrilled to be moving forward with the original plan. I know that he will be in fantastic hands from the time he is in the OR to the time that he goes to the ICU and then to the transplant floor. I know that Dr. Ben and Dr. Brad will be keeping a very close eye on him, so I don't think anything will go unnoticed. They are prepared for all of the risks and side effects that could take place post op. So other than me trying to get mentally and physically prepared for this surgery, I think everyone is ready.

You all will be one of the first (maybe the second or third) to know the date. I am fully expecting not to have anything until the end of March, so it will be a little while.

If you could continue to keep us in your prayers as we inch closer and closer to this life changing surgery, we would greatly appreciate it.

Thank you and we hope you enjoy the rest of your weekend!

I am an Aunt!

2010-02-16T19:40:00.003-05:00

Oliver Peyton Pfeffer was born today weighing in at 6lbs 8oz. He is 20 inches long and absolutely perfect! Both mom and baby are doing fantastic!

Introducing Oliver Peyton
I am such a proud aunt!!!
The boy loves his fingers
So cute!

Thank you! Thank you! Thank you!

2010-02-15T23:18:00.002-05:00

I don't know who it was who posted the link to the facebook page for Dr. Sheldon, but thank you so, so much! As soon as I clicked on the link and saw his face I started crying. I have been wondering how he's been and it was so good to see that he is back at home and doing well.

We are so grateful to have him as Max's urologist and surgeon, even if he does the transplant as an observer. We would rather have that than not have him at all.

So to whoever you are- Thank you so very much for posting that link.

Beth

Just Because I think he's too Stinkin Cute...

2010-02-15T17:32:00.003-05:00

I am working on getting some videos downloaded but my Flip Video Camera isn't working right. I am going through the troubleshooting process now. Until then, here are some pictures...

Happy Monday everyone!