Life is Good

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.