My 12 year old daughter had her appointment with Urology today. She has lots of complications from her Vater Syndrome. This is the condition she was born with that equals the physical defects her body has. She has recently received a Kidney Transplant this past December after being on dialysis since she was 4 years old. Due to her Urological issues her bladder has not functioned this entire time. It was decided prior to transplant that her Urological issues should be resolved after transplant for better success. Prior to transplant we say Urology as this is a requirement to fulfill for the Transplant department. When we walked out the appointment I had tears silently running down my face and the feeling of hopelessness and sadness. I reported this emotions to our dialysis nurses and doctors. They assured me that there is hope for my daughter and although I felt that way, they meant before transplant.
Today we met a new doctor in the same group. He was super nice, intelligent and patient. He explained things, he told us risks and he told us complications that can easily turn to life threatening problems. I listened intently. I asked some questions and I asked him to write down a whole bunch of things so I could research and learn about. He and I agreed that we should go forward with plans for her back surgeries. We agreed that he should consult with Nephrology and Her general surgeon who has done all her reconstructions. All and her colostomy take down, G-Tube and most of the exploratory surgery that she has done when she was little. If anyone knows her and I it would be those two groups of doctors, They have been by our side and pushed us through this journey since she was tiny. They helped guide us to make decisions that will give her better quality of life.
Now I have 6 options of how to proceed. One is to simply go about life as we do now. Do not change a thing except maybe work on getting that Stent out. The next five options are all similar in how I could possibly explain them but all quite different as far as how they are performed and how they would be managed after the fact. Each option gets more detailed as they go and deciding which way to go will kind of go by how she does on a Urodynamics study. This would show the truth about the bladder, its function, its ability to contract and all that goes along with a bladder. When she was a baby and her kidney’s still had some function, she was always wet. We don’t know if that is because function or size or maybe a little of both. She was a baby so it was not out of the ordinary to constantly change diapers, and by the time she was older her kidney function diminished and she no longer urinated so this was a non-issue until the future, which is now.
I am quite overwhelmed at the options and I know she is also. What exactly is the point of doing all this and at some point could still lose the Kidney as she is fighting the BK Virus that is the reason her Ureter is all narrowed and needed the stent placed.What if I decide to do all the surgery and then the kidney fails and this is all for nothing? I wish that I would instinctively know what is best for her. Of course I don’t know and holding the sole responsibility to make this decision is really scary and making me realize how much of a support my late husband was. I can remember his voice and I can hear him. I know the truth, when it came to our daughter he was the voice of reason in my ever spinning brain. He would sit me down and remind me that no life is guaranteed. He would tell me that her doctor’s went to school and studied and still do to help people that have these issues. He would tell me that I need to believe in the best and be prepared for the worst and he would end it with keep it real babe we need to be thankful for everything so far, and don’t worry we will all get through together. I guess I was so comforted by him telling me these things that I knew for sure together we would make good decisions or at least the best ones from the options presented.
I know I can seek second opinion in NYC. I know there are referrals ready to be written on the drop of a dime if we decide that although this guy was great, maybe someone else has seen this more, maybe they have learned a better way and already know how to do something that will eliminate some risk? I have no clue and I hope my good senses guide me to help my baby, She is my little partner in crime. Well, hopefully I will find some other families that have experienced some of this and maybe get some answers from people who live with these type procedures, that is where I find out the important stuff as they already experience.
Well all I can say is thanks Vater for reminding me just how delicate my little girl is……