In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
Yesterday turned out to be a pretty good day. He was happy and playful. When we came in on Tuesday, he had a scalp IV placed (easiest, and sometimes only place it can be put on him). Usually, we have to put a restraint on the arm closest to the IV because he wants to pull and play with it. Until yesterday, that wasn't a problem. But he was finally feeling well enough to be playful and explore some of the many tubes and wires around him.
We also gained some wiggle room yesterday, and then had to use it this morning. Nitric oxide is a very thin gas that can be used to help pulmonary hypertension. It was started yesterday afternoon, and we were able to bring his oxygen usage down to between 55 and 60%, a great start. And this morning, we were very grateful.
He slept pretty well last night, but was a little warm at first. Then about 6:00 this morning, he popped a pretty good fever: 38.5 C (101.3). He also needed more oxygen, a lot more. We were back on 100%, WITH the nitric oxide, and barely able to maintain 90%. Yeah, he's sick, REALLY sick.
Ventilator and Nitric Oxide that keep him breathing.
Tylenol and some agressive breathing therapy managed to help out some, and now he's on 80% again. So again, we have a little room for trouble, but just a little bit.
They're still thinking this is all viral. Labs have been drawn again, but they don't point to anything bacterial. So it's watch and wait, support and pray. His doctor is comfortable letting him direct things and keeping him on the nitric oxide for the time being, but he did say that if there isn't any improvement within about five days, he's not sure what is next.
Two IVs, one in each foot, ouchie...
So he got poked a few more times today, but he's asleep right now. We really have no idea how long this stay is going to be. It does seem a lot like one step forward, one step back and a slide to the side. I never was very good at line dances...