Once home Noelie thought that we went to the park without her and when I explained that we went to the hospital to visit doctors and nurses she answered "Me to papa, me to papa!". Let's hope not.
This afternoon we got the results and honestly we were hoping for a perfect score and got good numbers on all counts except the liver enzymes. Miabelle's liver enzymes went back up to twice the maximum recommendable level. As you may have read months ago on this blog, high enzymes are normal post transplant as the body processes and breaks down the many medications and chemicals the BMT kids are exposed to. Eventually these enzymes drop back to normal levels within 6 months, with a few kids longer like with Miabelle and with some it can lead to organ failure. She had been for months on Actigall, which is a medication that helps clean the liver and keep enzymes low, before we stopped Actigall last month. We truly had high hopes that the liver was now normal and not anymore under pressure but it is clear that her liver remains under a lot of pressure.
As a result, her file will continue to state that she is at risk for liver failure, not a very comfortable feeling. They will probably recommend putting her back on Actigall for a few months and retest again in 2 to 3 months. If it persists a liver specialist will be consulted to see what the next steps are.
We are looking forward to the day we can stop worrying but this may take awhile longer. In the meanwhile we remain hopeful.