We are having a fairly quiet day here, which is nice! The routine checks, plus some fun things like getting her dressed, and up in her seat for a bit.
Physio brought the little chair in for her yesterday, and we set it so she could see out her window a bit today. She can only handle about 30 minutes before she gets tired out, but she does really well considering!
She's been fighting sleep a bit the past two days, probably feeling the lack of nursing more now that she has been getting a bit from a bottle. Last night she was nearly settled around 11, but ended up keeping me up past midnight because she was having what we assume were tummy pains from the more concentrated feeds.
She's stuck on portagen for 6 weeks, but can resume normal feeds afterwards. We may talk about doing more bottling in the next few days, her current bottles of skim breast milk are just for oral stimulation, but she's sucking them dry.
The fluid in her chest has come down significantly and can barely be seen on ultrasound now, which is great. They were able to reduce her diuretics this morning. Things looked good on x-ray too, and her lungs seemed less wet than previously.
After reviewing everything yesterday, they decided to alternate which medications they were weaning. So they'll reduce her dose of hydromorphone by 10% and then in 12 hours they'll reduce her dose of adavan by 10%. That way they can chip away at things, and hopefully avoid more withdrawal. They score her for withdrawal every 12 hours and they give her a "breakthrough dose" if they score her higher than 4.
She is down to two IV infusions- dexmedetomadine, which they are also slowly weaning in the background and have started her on clonidine orally, to help them wean the dexmed. The other thing she has via IV is milrinon, a heart medication which they'll look at weaning her off of next week if all goes well.
For the ventilator, they are going to deflate her cuff later today. And they've been weaning her PIP and PEEP by 1, alternating every 12 hours. Right now she's at a PIP of 18 and a PEEP of 8. Her oxygen on the vent is set to 45% I think, with plans to take it back to 40% and leave it there for a bit.
Her sats are good, mid to high 90s, since she's mostly left to right shunting. And her heart rate is a bit higher since they started weaning the dexmed, but giving her a bit more clonidine seems to have helped. They'll probably adjust the dosage of the beta blockers at some point as well.
Praying for more progress in the coming days ❤️ thanking God for all He's done so far!
