3.21.06: some extra TLC

The past 36 hours have been touch-n-go with Avery and his work of breathing. He was taken off of the ventilator at around 10am yesterday. Initially, he was working really hard to breathe and his doctor’s assessment at the time was that he was disappointed with how much Avery was struggling and felt it was a greater than 50% chance that he would be reintubated.

In general, his lungs seemed better than before he went on the ventilator a week ago, but it appears as though the endotrachial tube used may have been a bit bigger than he needed, causing him to swell after it was removed. His upper airways were clearly obstructed and it was noticeably painful and difficult for him to take breaths. He received breathing treatments often of several different medicines, including one of which reduces swelling. He was also administered decadron, a steroid that also reduces swelling.

Avery was put back on heliox because the helium mixed in with oxygen helps get the air moving into the lungs easier. He received this through his cannula, and supplemented with extra O2 by a mask or blow-by Dixie cup. His oxygen saturation levels are being watched, but even more so, is his respiratory rate and his CO2 levels because that gives a better idea of just how much work he is doing.

At one point yesterday afternoon they were even getting everything ready to put him back on the ventilator, but I asked if I could just try holding him for a while and see if he settled down and rested a bit. He breathes best when he’s resting on a warm chest, heart-to-heart just like we often did in the NICU. After a few hours of holding, he looked reasonably better and there was no longer an urgency to be prepared for intubation. His CO2 levels dropped from about 90 (the upper limit to what they deem acceptable for him) to less than 70.

He spent the next few hours mostly resting on his tummy in the bed. His effort to breathe was still more than we could comfortably feel like he was over the hump.

Mama Mary and I then did the Mason hand-off in the parking lot and Mary rushed back upstairs to be with Avery as I switched to being focused on getting Mason home and in to bed.

Mary held Avery while he slept until about 12:30am, at which time his bed was re-made, he was given his late night treatments, and Avery went to sleep back in the bed. He slept sporadically (as did mama), but did seem to have slightly improved air outflow by the time that I came back this morning.

Today was uneventful, no turns for better or for worse. He's holding steady, but we're really hoping he'll show some clear signs of improvement by morning. If he doesn't, the pulmonoligist intends to take a bronchial scope of some sort and look into his upper airways to see if there's anything unusual going on.

Hopefully, another night of rest and some extra TLC will boost him in the right direction.

Meanwhile, Mason has been home and healthy but has come up with a fever as high as 102 this afternoon and evening. Let's hope there's nothing NEW going on with him now!

(forgive any spelling and grammatical errors ... no time to proof read or run spell check this time ... gotta get back to the hospital, as it's my turn for the overnight shift!)