The Transplant Coordinator from Children's of AL called Friday, 9/26. The transplant team had their monthly meeting and it was decided that they WILL transplant Maci at Children's of Alabama.
We. Are. Thrilled.
Maci will be put on the transplant list as inactive for now. This will allow her to accrue waiting time points. They expressed that they want her to grow. The bigger she is, the more room she makes for a transplanted kidney. They want her to weight to be 12 kilograms (26.5 lbs) and when we were there on 9/15 her weight was 10.9 kg (23.98 lbs). She's been to the pediatrician twice in the last week and her weight was 11.34 kg / 25 lbs. The goal is for her to grow longer and to gain a little bit of weight...not just fatten up. LOL
The results from her antibody test remained the same, high at 98%. This means a probable lengthy waiting time. They told us to not be discouraged if Maci spends a year or even more on the waiting list before getting a matching kidney offer. To some, this may be discouraging, but to know that my girl WILL be transplanted again is hope enough for me. It makes me excited to know that her quality of life will be improved with transplant and that Children's of AL is willing to make that happen for her.
She is still doing well on dialysis and her labs are good with the exception of high sodium the last couple of months. The amount of water she receives daily was increased again last month and her sodium level was normal when we were at Children's on 9/15 so hopefully we are back to all "normal" levels for lab work.
Maci saw her pediatrician a few days ago and is on a prescription med for some wheezing in her lungs. It's the very first time her pediatrician has ever given her a prescription so I knew he was trying to prevent something serious. She had also been coughing and running a fever and he said it was something viral. She had a normal chest xray and normal bloodwork (CBC). She is still coughing through the night and I am hoping this will be short lived. October - December always seems to be her roughest months for fighting coughs, colds, fevers, etc. She has been unable to go trick-or-treating or attend any fall festivals since birth (2 Halloweens) because she has always been sick. She has spent every Christmas (3 of them) at Le Bonheur since birth. I hope we break the vicious cycle this year!!!! We are beginning to think that she doesn't like holidays. :)
A few have asked about how it will effect my attending school when Maci is actively listed and if a kidney were to become available before I finished. Another popular question, how long we would be in Alabama for her transplant. Above all, Maci is my top priority and her getting a kidney would take precedence over school. I KNOW that the Lord opened the door for me to be accepted to nursing school, provided a way for me to have a career and to better our financial situation. I trust that He will continue to open doors. A kidney could become available while I am on my summer break or during a time that I could withdraw and pick back up the next semester. We never know. Instead of worrying about what I might have to do, I will worry when the time comes, if I need to worry at all. I don't think that we have come this far for doors to close.
For Maci's transplant, she would have to be in Alabama for approximately 3-4 weeks and not all of that time would necessarily be IN the hospital.
I know I sound like a broken record when I say THANK YOU ALL for your support but I never want anyone to think that we do not appreciate the love and support and all of the encouragement given to us and especially for Maci. We are blessed and we are thankful.
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