So we finally got all of Elise's biopsy results back. Pathologists from here at UF, Texas children's, and Seattle Childrens looked at the biopsy samples. And instead of finding one thing wrong, they actually found several. The biggest issue being that Elise's lungs have never developed past the neonatal stage. They have grown in size, but have never grown new air sacs and other tissues. The second issue is that the sample showed evidence of old and new bleeding. Now pulmonary hypertension can cause some bleeding, but shouldn't if her pressures are low enough (and they seem to be). And minor bleeding is ok because the body can handle minor bleeding. But, her samples showed too much bleeding. There are some autoimmune diseases that can cause pulmonary hemorrhaging, and we are planning to draw blood next month and test for these diseases. The other findings of the biopsy were mostly expected. She has pulmonary fibrosis, which is scarring of the interstitial tissue from viral illnesses she has had in the past. Enlargement of her pulmonary vessels, which is a result of her pulmonary hypertension. And chronic bronchitis.
We knew the results of the biopsy were not going to be good news, but we weren't expecting them to be this bad. The results also confirmed for us that a lung transplant is definitely in her future, and actually closer than we originally thought.
We had her on steroids for about 11 months, but stopped them in October because of the side effects. Since stopping the steroids she has become increasingly short of breath and now requires oxygen 24/7. She still goes to school, but has trouble playing a recess due to shortness of breath. We started her on a new med this week hoping it will work similar to steroids without the side effects. The medicine takes about two weeks to start working, so we are keeping or fingers crossed that it works, and we can delay the transplant as long as possible.
And Jason is doing everything he can to get a job in St. Louis so we can get Elise to St. Louis Childrens where she will eventually have her lung transplant.
