
Not a very good snapshot, but this is Mahaela all set free from tubes, wires, lines, etc. Here she is roaming the halls just before we left the hospital. She has been home a week and a half and hasn't missed a beat. She is playing outside, riding her trike, running around...everything but the trampoline!
We saw the nurse practitioner last Monday, because our surgeon had an emergency case. M. had a great chest xray. We dropped her lasix from 3 to 2 doses a day. We had blood work and chest xray again yesterday (Monday) and it was still all clear and her lab work looked better. I thought it might show some electrolytes off a bit because of the lasix, but things were actually better than before. She was getting a little sunken in around her eyes--that dehydrated look to her. We were able to drop her lasix down to just once a day now. There is something about meds that just make you feel like you have a chronic illness...and she does...It's just that before surgery she was on just a baby aspirin--not even a prescription to deal with.
Now she is on baby aspirin--for her lifetime, Enalapril (vasotec, a heart drug which we hope she is weaned from, but there is a debate about it's protective benefits), amoxicillin, lasix, prevacid (which I also stopped today). She is so good about taking them--doesn't like lasix.
I don't know if I mentioned in previous posts, but she does not have a spleen. So she needs a prophylactic antibiotic for a couple years or perhaps much longer. She also needs a few more vaccines when she has recovered. We had a very thorough infectious disease doctor consult with us while she was in the hospital. He was great and gave us many articles from the literature on tests to be done on internationally adopted children as well as how to handle asplenic children. She will just always be at high risk for getting the really bad bugs...the ones that are resistent to amoxicillin!
We saw the pediatrician last week also. He is impressed with how well she looks. We will see the surgeon one more time for him to clear us and then we will see the cardiologist in mid may for an echo and check up. From that point on, the cardiologist will manage her care.
We were able to all go to church on Easter Sunday, together. We all sat together. Mahaela is doing better at sitting and whispering, but she did get taken out 2 times...it was long, so that wasn't so bad. She saw her Sunday School teacher that she really connects with and got to give her hugs.
The crazy tale spin of end of school stuff is upon us. In just a month the pool will be open and it will be hot--it's hard to believe. Mahaela will be all healed up and ready to play in that pool that she doesn't even know is out back--I wonder what she thinks it is??
So, that's the latest, greatest news. Now we move on to the crazy, boring-to-anyone-else, lives that we live.