Long update on Max

Okay, first of all I apologize for the extremely long delay in between updates. Fortunately life has been pretty quiet until this week with Max. We had a urology test done on Tuesday called a urodynamics test. This test was done by placing a catheter in his vesticostomy and blowing up the balloon to block the urine outflow. They thin stuck a small tube into his rear end and blew up that balloon. The goal was to block all holes so that they could measure how much pressure was in his bladder when they filled it up with water. Once they filled his bladder up, he peed through his penis (YAH!) So the good news is that Max peed when his bladder was full.

On Wednesday we had an appointment with the head of the urology department, Dr. Sheldon. The information that we got at this appointment was not what we were hoping for. We were told that Max's bladder was developed under high pressure, so it's very small and thick, which we knew. His ureters are also contorted and didn't develop how they were suppose to because of the high pressure that they developed under. Max also has grade 5 reflux (the worst it can be) into his kidneys. This means that the urine that is in Max's bladder refluxes back up into his kidneys. With all of that said, Dr. Sheldon told us that Max may never be able to pee on his own. It's possible that he may have to be catheterized for the rest of his life, but we won't know until we move forward.

With all of that said, here is the plan of action. Max has to undergo 2 very complicated surgeries. All of this has to take place BEFORE he has a kidney transplant. We have to fix his urology problems so that it doesn't damage his new kidney. Surgery #1 (taking place in early January) will consist of closing his vesticostomy, fixing the blockage, and placing a supra pubic tube (SP tube). This tube will be placed in his bladder and exit in his lower belly. The SP tube will allow us to do what is called bladder cycling. This will consist of us filling his bladder up with fluid in hopes that it will stretch out his bladder and make it bigger. They will then retest and see if we have made progress. If this doesn't work we move on to have a much more complicated surgery. Surgery #2 will consist of fixing the reflux. This will be done one of two ways. Reimplantation of the ureters (fix the ureters) or a nephrectomy (remove his kidneys). If the bladder cycling fails to make his bladder larger they will have to do a bladder augmentation. This would involve taking either stomach, ureter or intestine and enlarging his bladder that way. This is NOT what we want to happen. The chances of it happening are high, but Dr. Sheldon examined Max's vesticostomy by sticking his finger through it to check the capacity of his bladder. He found that the bladder capacity was better that what he had predicted. So we are keeping our fingers crossed and praying extra hard that the cycling will work and that we won't have to go down that road. With surgery #2 they will also put in what is called a mitrofanoff. This is a channel that will allow us to catheterize him several times a day without having to go through the penis. So yes, another tube in his belly. They will then retest to see where we stand.

Surgery #3 will (fingers crossed) be a kidney transplant. The nurse informed me though that she doesn't think this will take place in 6 months like we were hoping for. So that is a huge bummer, but we will take whatever is thrown at us.

This is two very big surgeries that Max has to face with a good possibility of lifelong complications. We knew this was going to be a long and hard road, so we are moving forward with our heads up and holding onto our faith that, once again, Max will pull through this. Max's nephrology fellow, Dr. Laskin, told me that they have several patients that are walking around living a normal life that have a mitrofanoff and that have to cath themselves rather than pee normally. I am still scared to death, but feeling a little better about the situation.

Alright, now that I have bombarded you with the not so great, but not the worse news we've heard... let's move on to something better. Max met Santa last Friday at the Nephrology/Dialysis Holiday Party. This is a get together that they have for all of the employee's families and the patients and their families. It was so nice to get to meet others that are going through what we are. We got to meet one little boy who has exactly what Max has. His is fortunately not as bad as Max's so he isn't on dialysis yet nor will he need a transplant until he is about 10 years old. We also met a little girl who was put on dialysis at 2 weeks old and had a kidney transplant at 14 months of age. She is now 3 years old and doing great! This was an encouraging family to get to talk to because they do know exactly what we are going through. It was very neat and we can't wait for Max to walk into next year's party with a new kidney and with a lot less tubes coming out of his belly.

We also went to the RCNIC after the Christmas party to see Max's night nurses. It was so great to see them again. We still talk about them to Max so that he doesn't forget them. We'll see you again soon ladies!!! We miss you!

Max made me cry last week. I put him in his jumperoo expecting him to do what he normally does and lean to the side and stare at the toys. But he didn't. He sat up straight and started bouncing and playing with all of the lights in front of him. I immediately started crying and jumping up and down with him. It was a very proud mommy moment.

I think that is it. If I forgot something I will repost :o) We hope everyone is doing well and finished with their Christmas shopping! Oh how fast the year has gone. We'll talk to you soon.