Through many dangers, toil, and snares

4/18/21 erin

Jon and I are in the same city for the first time in seven days! We went to the hospital together for the first time since…February? Only one parent at a time allowed bedside, so Jon is talking to Breen and I will scribble a dribble.

Some of the other months of yesterday?

Jon called the night nurse at the end of her shift, texted me a lot of the good news around 6:15 am. I visited with the family we’re renting from to pick up the keys at 8:30am.

Take down surgery is on the calendar! That is the surgery when they reattach the two pieces of intestine that are currently sticking out his flanks. It is a monumental occasion. It is set to happen on May 12. Because his feeds and refeeds have been going so well, and because he has been gaining weight.

Little Breeny’s O2 was in the 60s, then by 10 am it was down to the 30s and 40s. But around midday they decided to sedate the child, he was fighting against the jet vent. Morphine was going back into that tiny bloodstream and slowing down all the great digesting and reabsorbing and pooping work. Darn. But breathing is important too. But darn.

The jet vent sends many tiny puffs of air to help expand lungs. It has a little box that sounds like the chugchug gas motor of an old carnival ride. Or was it the cotton candy machine that made that noise? Like “pup pup pup-up pup pup pup-up” somewhere upwards of 250 bpm on your digital metronome. Breaths per minute. (That’s not how they measure it, that’s just how it sounds.) Maybe Jon already explained this?

In addition to all the tiny puffs, they send a few normal, full-length breaths in there. Recovery breaths. So there’s lots of things they can adjust, how fast the puff puffs are (rate) how much pressure they have behind them, wait why am I explaining the jet? I ask about seven people per week to explain it but I still don’t understand it at all. Saturday midday they were still making a lot of changes to the jet.

I went across the hall to pump, when I returned Breen had brady-d. (Not sure how to make that past tense in writing, but I hear it out loud a lot. He’d had a brady episode, heart rate suddenly drop.) The respiratory tech and nurse were trying to get his O2 saturation back up. As this was getting solved, around 1:30, I called Jon so we could both talk with the NP du jour.

No idea what the bacteria was, white blood cells up a little from yesterday, she suspects pneumonia, would swipe the tube to check for that. A couple things had come back negative, keep him on antibiotics, but keep eating.

By 2 pm they decided to pause feeds. He hadn’t been stooling into his ostomy bag for a few hours. RT wanted a new chest X-ray to see if vent changes had helped anything, nurse wanted a tummy X-ray (KUB) because she was worried about stool output. His O2 saturations began dipping much lower and it was taking much longer for him to recover, even when they cranked his fiO2 up to 100%.

Someone suggested that when he is bearing down, the tube might bump the carina (tissue where the bronchi split), which would hurt and send more chaos around body. Like cause that Brady.

Lungs looked way better than they had that morning! Tummy looked fine, at first. Then, as I said they looked closer, thought it was nec, and we lived through that debacle til 11pm.

I can’t type any more, I’m sapped.

(SUNDAY WAS BETTER THAN SATURDAY but he’s still dipping but they’re giving him albuterol and it has helped a ton. And they’re thinking there never was an infection and the virus tests all came back negative.. )