Well there was good news and new news. At the last Echo in October Dani's shortening fraction was 26% last time and this time was 29%. Her ejection fraction was 52% and now is 53%. Both of these numbers are in the normal range (YEAH!!!). Dr. Goel left the medicine all the same but said he will review her chart more closely later on today and would let us know if he changed his mind. He also is talking about her weaning completely off which was exciting to here. I can not imagine not having to give her any meds ... that would be wonderful.
She still has the PDA (hole in her heart) so he wants to close that this summer. He said its a pretty minor procedure but would require an overnight stay. He said we could possibly do the eye surgery at the same time so she will not need to be put under twice this summer. I am going to get a second opinion on her eyes in May and her appt with the original eye doctor is the first Friday in June. So I will know more then. He wants to wait until summer because she will obviously be further along in her transplant and the less likely she can catch a cold or flu then.
He wants the central line out as soon as possible because of the risk of infection especially with the hole in her heart. So I will talk to Dr. Hayashi and Yvonne Monday to see when that will be.
Ok so the new news is she has fluid around her heart. (Hi Kallie) He said that the GVHD (Graph Vs Host Disease) could be causing it and it might go away on its own. The problem is that we have NOT had an echo since October so we do not know if it has been there or just appeared or is getting better or worse. So she will go back next week for a quick check on it to see if it is getting worse, better, or staying the same. He is not concerned with it if it stays the same but we will keep an eye on it. It seems it is always something.
Dani is teething and has been pretty fussy this week in general. I had her in a pretty good routine last week and that went by the wayside after the weekend. She is not sleeping as good as she had been but after tylenol and numbing medicine she is not as cranky.
She has lots of hair on her back and shoulders. She also has pretty good side burns, mustache, and hair on her forehead.
One day at a time is all we can ask for. Her 100 day testing will be coming up the 2nd week in February I believe. I have not gotten a schedule yet but when I do I will post it.