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)