Overall she is happy with where Parker is. We are going to do a few tests on his bladder, just to be safe. His bladder has never been used. Yes, I said never. She is consulting with Dr. Roth, who we love! Dr. Roth is the only surgeon who has ever operated on Parker. He performed Parker's nephrectomy and hydrocele repair, and Parker did really well after both of those. She will get his opinion in which tests to perform before the surgery and he may very well be in the operating room for the transplant as well. This makes us much more comfortable. We like familiar faces!
These bladder tests prior to transplant will tell us a lot. They will determine if he needs a bladder augmentation. They will determine if he will need to be catheterized for a few months after transplant. They will determine if he will need a drain after transplant. They will determine exactly how much his bladder can hold, and how much it will need to stretch.
She informed us that Children's uses a steroid free protocol. Instead, Parker will get three doses of strong immunosuppressants through a central line while we are inpatient. One of these doses will be immediately before the surgery. Each treatment will run over a course of about 6 hours. They chose this method because of the long term affects of steroids on children. I, for one, am happy about this. Not only for the long term reasons, but also because a child with "roid rage" after a major surgery doesn't sound pleasant.
She told us that since Parker is so young and extremely active-which she got to see first hand today- that she plans to keep him sedated for the first few days. I like this plan. Hopefully he will rest through the worst of the pain and recovering. I know that in the NICU, he tried pulling out every tube and wire possible, so I can only imagine that it will be much more difficult to control him now.
We talked about pain management and making sure that it is kept under control. It is a catch 22 with pain medicine, though. While it keeps Parker comfortable, it will also keep his bowels from waking up. This could lead to extreme constipation which is painful in itself. She agreed that he would need some sort of stool softener to make sure that he doesn't get "backed up". He won't be eating for the first few days, so hopefully this will help with things as well. She did say that she expected him to lose some weight. Since he is on dialysis, a lot of his weight is fluid related. When our new super kidney starts working it will be in over drive, so all of this fluid weight will disappear.
We asked her about the possibility of placing a g-tube during surgery. A g-tube is a feeding tube that is placed on his belly and goes directly into his stomach. This will be critical in the beginning to ensure that Parker can get enough fluid intake to keep his kidney happy, and to make sure he is getting his rejection medicine. When he is able to take the correct amount of fluid and all of his medicine by mouth for a little while, then we can discuss removing it. She was okay with the thought of this and said she would present it to the committee when they meet on Wednesday. I am eager to see my babies face without tubes and tape again!
We know that after transplant he will be on a lot of medicine, two of which will be extremely critical. These are his anti rejection medicines, Prograf and Cellcept. These medicines have to be given exactly 12 hours apart every day. The time frame is extremely crucial for these. He will also have labs 2-3 times a week for the first few months, as well as transplant clinic once a week. So the first few months will be extremely hectic.
Overall, we are at ease after our meeting today. We had a lot of questions answered today and are happy with the way things are going. She did mention that she has been doing all of the pediatric transplants. They have been doing 2-3 living donor transplants a week, so she's pretty experienced.
Here are a few new pictures of our big guy..
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