September 30, 2010

Results: Rejection

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

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.

September 28, 2010

Biopsy is Scheduled

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.

September 23, 2010

I am so in love with this kiddo!

We are in so much trouble

Prograf Level of 3.4

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.

September 22, 2010

Creatinine of .5

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.

September 9, 2010

2 Months Post Transplant

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:


September 1, 2010

Cincinnati Walks for Kids

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

We are looking forward it!