Sorry we missed a day of posting, it was an emotional day. When they repeated Haley-bug's echo on Friday morning (hoping that her right ventricular function would be improved) she was really hysterical (because they wouldn't let me feed her first, they wanted me to do it during the echo), her heart was beating 215 bpm, and it showed that her right ventricular function was actually worse than the day before. All the doctor's admit that it's very difficult to assess heart function accurately when it's beating that fast. Also, the valve in her heart between her right ventricle and right atrium was not leaking any worse than normal (it usually has very mild regurgitation) and they said that if a heart truly has decreased function then typically the valve also has decreased function and will leak worse. They also think that probably her heart was exhausted after surgery (understandably) and that while we tried to just give her more time to work it out on her own, all that happened was that her heart got more tired having to do all the work itself. So they decided to start her on a drug called Milrinone which is run IV as a constant rate infusion and helps her heart to relax better. That way it can fill more fully and get the maximal blood flow for each pump. It also helps her heart contract better with each beat as well. They want to leave her on this until Monday and then repeat the echo and see where we stand. We are praying that her right heart function will be improved after a weekend on milrinone. She did have to be on milrinone the last time she was in the CTICU actually, so hopefully it will work as well again! Obvioiusly this wasn't the news we were hoping for at all on Friday - actually right before we found out about this the doctor's had told us we were going to C5 that day and probably home the next - and I was devastated.
Haley also threw up after she ate a couple of times yesterday, which I think was mostly due to inadequate burps due to her having lines and wires all over that make it difficult, and this also concerned the doctors that maybe her right ventricle wasn't pumping well enough and that she was getting poor blood flow to her gut causing her to vomit. So they stopped her feeds from yesterday late afternoon until about 2 pm today - it's never fun to have a hungry baby! They were running fluids with dextrose in them so that helped a little, but today she was pretty angry for a little while. She has done wonderfully since they started her back on her feeds and hasn't vomited anything up, we hope that she keeps it up (or down rather)!
Another bump in the road yesterday - the IV they had placed in her hand during surgery blew after they'd been running milrinone and dextrose into it for awhile. They had to try to place another IV last night and after sticking her 8 times they finally managed to place a line, in her head. :( This was something I really hoped to avoid as silly as it seems to care about that. Needless to say that was really traumatic for her. And then this morning they had to place a more stable line anyway, so she had to be sedated, taken to ultrasound, and have a PICC placed (an IV line that goes to her heart). That went smoothly, thank goodness, and her PICC is placed in her right arm. She still has the IV in her head too, but there are no lines to it - it's just a port they use to give meds and draw blood for labwork.
After recovering from being sedated for the PICC is when she woke up a hungry, angry baby! It took them about an hour to get in orders for her to be allowed to have formula and to have the formula delivered (*grr*), and when she finally got to eat she snarffed it down and was a happy little girl. She ate a couple more times between 2 and 6 pm, and she's been sleeping soundly every since. I think it is some much needed, peaceful, full-bellied sleep. Hopefully she will wake up soon and be a hungry muffin!
So for now we are waiting out the weekend, praying for good news on Monday. If all goes well Monday, we may get to move to C5 for at least a couple of days. Today I've had fun decorating her crib with construction paper Christmas trees and decorations. I decided if we're going to be here awhile we may as well be festive! We've also discovered that you can send cards to Haley via the Children's Hospital website that they actually deliver to her room, so we've been having lots of fun with that! We've made a friend across the hall, a little girl named Maddie who is also a hypoplast and who just had the 3rd surgery, and her room is majorly decorated and has inspired me to do the same for Haley - it makes it so much more cheerful!
Kristy! Haley will do very well! she is a fighther! in fact it is good she has not lost her appetite and gets mad if her feeding is not delivered on time! - Do not despair, have faith, hope and Rest!, we will be sending lots of cards! You are the best parents in the world! and Haley knows it! Love! GrandmaB,Grandpa Chuck & Anty Arielle.
ReplyDelete