A step back

Today the boys are 8 weeks old. And today Samuel took a big step back.

It wasn’t entirely unexpected. He’s never had to work so hard before; on the CPAP he has to do everything himself. We expected that he’d have to go back and forth from the vent to CPAP a few times.

He made it exactly 36 hours on CPAP.

I was there today after work (my first day back!) for his 4pm hands-on care. He was awake and alert; he was very lethargic but his eyes were taking in everything. Afterwards I saw his doctor who was quite pleased with his progress on the vent (his blood gas this morning was fantastic). She updated me on the results of his heart echo today. He still has his large PDA, still has his other two holes, the ASD and VSD. She said the echo showed signs of pulmonary hypertension. She said the first course of treatment is to keep his oxygen higher so he will have higher oxygen saturation in his blood. This could last anywhere from a few days to a few weeks. If it doesn’t work, there are medications we can use to help his lungs relax.

This evening we called his nurse, asked her to push his 8pm hands-on to 9pm so that Scott could see Sam awake. She agreed. We get there right at 9pm, start walking back, get stopped by his doctor.

Sam’s back on the vent. His 8pm blood gas came back horrible. The carbon dioxide levels in his blood sky rocketed. His repogal (the tube going to his stomach to relieve air pressure from the CPAP was filling with blood). The nurse turned on the suction for the tube and it just filled with some type of bloody liquid. His feeds were stopped.

We don’t think it’s an intestine issue (NEC) right now — he’s showing zero signs of an intestinal issue, but something is happening.

I’m really hoping he just tired out today. I’m really bummed that I still can’t hold him yet (it kills me really). What the blood issue is, who knows? Maybe excess blood from the pulmonary hypertension running into his stomach? His doctor today mentioned that the PDA causes some of this. Well just close it already!!!!! Seriously, we’re going to bring this up. They keep mentioning the PDA, the issues, but they aren’t doing anything about it. Well, if it’ll eliminate some issues, shouldn’t we do something?

I’m so sad about Sam returning to the vent, but again, we knew it was a likely possibility. We had a good 36 hours; he’ll go back on it when he’s ready.

Sebastien’s now in an open air crib; tomorrow they’re pulling his feeding tube up to his stomach.

Update: 12:22 am
Sam’s latest blood gas came back great; his carbon dioxide levels have decreased by half. He clearly needed a break. Still dint know what the blood is, but it’s still coming out. They’re about to give him pepcid.


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