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April Clinic

Kinley went to St. Louis Children's today for her clinic appointment. She was very good for labs but made sure that the phlebotomist was aware that she expected a sucker and a Doc Mcstuffins sticker as a reward for her good behavior. She ended up with 2 suckers and the sticker since she didn't cry at all. We then made our way to clinic.

Kinley's doctor and transplant coordinator were extremely please with how she looked, her size (over 30 lbs and 35 inches tall), and her overall health. We talked about medications and decided that we are going to try to stop 2 of them. One of them is a medicine to help control her itching, or pruritus, which is common in liver disease. Kinley takes 2 medications for it, but it has been well controlled since starting the 2nd itch medicine, so we are going to get rid of the 1st one she was on. The second medicine we are stopping is Bactrim. It is an antibiotic that she has been on since her Kasai surgery at 2 months old. Because a piece of her intestines was attached directly to her liver, Kinley does not have any type of valve to prevent bacteria from her intestines from getting to her liver and that can cause an infection in her liver called cholangitis. Cholangitis could damage her liver further or cause her to become septic. Kinley has been on the Bactrim to help prevent this from happening. Long term use of antibiotics can cause problems too, so, since she has not had problems with cholangitis, we will keep our fingers crossed and try going antibiotic free. That brings her down to only 6 meds!

Kinley has been struggling this winter with very low vitamin D levels, so we are waiting on results to see if it has improved since increasing her vitamin D supplement to 32,000 IU a couple months ago (the normal recommended daily allowance is 600 IU). I am hoping that taking walks with Grandma and getting more sun exposure recently will help also and maybe we can decrease her yucky tasting medicine.

We also discussed the possibility of Kinley's portal hypertension causing varices that could rupture and cause internal bleeding. This is nothing new, we talk about this every visit and review what to watch for so that we get prompt help if this ever happens. Sometimes upper GI scopes are done to check for varices and a procedure called banding can be done to try to prevent them from bleeding. We were told about 6 months ago that they may want to do a scope at age 2. Today they said that Kinley is still to small to perform banding. They talked about research that says the survival rates are the same whether a scope is performed before or after a first variceal bleed. It is a little frightening to hear them say "survival rates", but all in all the cons outweigh the pros and we are not going to do a scope at this time. We will continue to watch for signs of bleeding although all signs right now point to Kinley's portal hypertension not worsening.

Ok, I know I am a bit wordy, but here comes the best part. Near the end of our visit, Lyn said, there is something we need to discuss. She said that because Kinley has been doing so well for so long, they do not feel that she needs to continue to be followed by the transplant team. They want Kinley to go back to seeing just her GI/Hepatologist just like other Kasai only kids who are not in current need of a transplant. I think she thought I would be upset. To me, although it will be sad not to see everyone (especially Lyn), it strengthens our hope that Kinley can continue to be stable for years and not be immunosuppressed from transplant. Kinley's GI/Hepatologist, whom she will continue to see every 3 months, is part of the transplant team. Therefore, I am completely certain that, when the need for transplant arises, Kinley will be promptly referred back to the transplant team.

About a year ago, when Kinley's condition was stabilizing and they decided to place her on inactive status on the transplant list, I hoped and prayed for just 1 year. I wanted 1 year without a hospitalization. One year without an NG tube. One year to go on a vacation and not worry about how many hours away from St. Louis Children's Hospital we were. One year to feel like life was fairly normal. I could have never imagined that I would get all that and more!!! Kinley still has a life threatening condition. Things can change very quickly. She is still at risk for bleeding, liver failure, cholangitis, and even developing tumors on her liver since it is cirrhotic. She will still need a liver transplant some day, but what a blessing this time with her has been. What a joy to watch her and her sisters interact and just live life.