Ethan had a great night despite starting it off with a really high fever. He got off Dopamine and has now had one dose of carvedilol. He was peeing soooo good they had to stop his bumex drip! And he was negative last night which helped him weigh in a little lighter! Sweet. A lot of this progress is probably due to a new med they satrted yesterday called nesiritide. It helps adults with heart failure and kidney/peeing issues. They only use it in infants when they have to. It was started since it seemed to be taking so long to get off the dopamine. They wanted to try and help break the cycle. Looks like it worked. It bridged the gap to getting him on the carvedilol. Now I sit holding my breath waiting for the new drugs to work miracles! (except I have to wait from home for a day or two because I have a head cold/sore throat, yuk)
Unfortunately Ethan's initial antibody blood work (PRA)came back at 100%. That means is blood had a bad reaction to all the blood it was tested against. This means he has a high chance of rejecting a heart if he were to get a heart transplant. Yet, we kind of expected it to be high. It is common with heart babies who have had a lot of surgery and blood transfusions and there is a medical protocal to try and reduce it IF we needed too. Go Ethan. . . let the new meds work little buddy!
3 comments:
Hooray for Nisiritide. Wow, that is impressive work for a night. Bummer that you have a head cold and have to stay home. What a blessing that he is doing great despite your absence, that will make it easier to endure the separation. Hugs. Let's have faith that the heart meds will do the trick. It warmed my heart when I heard about the NP's dream...Ethan keep up the good work!
It's so good to hear that he's doing better! Hopefully the carvedilol will do the trick! Owen has been on it for a few weeks and we'll find out on the 18th if it's doing any good.
They still planning on taking him to the cath lab soon?
http://cicilyspage.blogspot.com/ this is my friend's little girl's page, she has info on her trachm you might find it helpful.
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