I hate that the world has lost such a precious soul. CHD steals lives before they've even begun. It's not fair; that precious baby deserved a beautiful life with her spectacular parents. It's not right. No baby should have to endure the horrors our kids have gone through. Yet here we are and here we'll stay, because that's reality.
Sweet E and little Avelyn are 2 of the 40,000 kids born annually, in this country alone, who must fight for their lives from the first breath. It's a cold and broken reality, but CHD can strike any family at any time. Please raise awareness and share the tragedy of this disease. We need more funding for the treatment and care of these little warriors. CHD research is vastly underfunded given the frequency and severity of disease.
Avelyn started off the week in a bad way.
Her PD got clogged and then drained all around the site. It's a long story but essentially this caused her to retain potassium and to become ulcerated around the PD site and her arterial line. She also become extremely delirious and ended up not sleeping for nearly 36 hours. During this time she was dealing with pain from her belly not draining, ulcerative wound sites and also extreme constipation.
Her blood pressures stayed elevated and her chest tube output has been trending back up ever since. She cried much of that 36 hours. It was so heart wrenching. Her PRN dilaudid was changed to fentanyl and that seemed to help her pain and restlessness. As the week wore on she grew more edematous and her belly hardened. Wednesday she got a new PD site which allowed dialysis and feeds to be restarted.
Since then she has lost a lot of the extra fluid and she's starting to look like herself again. She still has a long way to go but she is slowly getting some fluid off.
She still hasn't peed but I have tried to not agonize over it. I believe she'll get there with time. I have to believe that, the alternative is too unbearable to consider.
She is tolerating small weans on ventilator settings for now. Hopefully we can get all the extra fluid restricting chest expansion off in the next week to get her better optimized for extubation. Please pray the chest tube output starts the trend back down and of course, as usual, for pee pee.
Love to you all.