Wednesday, May 12th, 2021
Mom slept from about 7am-8am and then woke to James bradying and desating pretty low. Today we have our primary nurse and her intern back. 🤗 She encouraged Mom to go home and get a few hours sleep before the trach change in the afternoon. There are only a few nurses where Mom would feel comfortable leaving, taking a shower, or even eating downstairs in the cafeteria. However for Mom she is at the point where she doesn't really feel comfortable leaving James ever. So that's a really hard decision to make but she's going to be admitted into the hospital soon if she is getting zero sleep.
Did we mention that we just found out that our Cigna insurance covers only so many days of Home Health nursing care? Yes James will probably need 24/7 care for 3 years and we only get about 3 months covered. 😔 It's also extremely hard to get coverage even if your insurance approves it.
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| James is a Mer-man with his fish tail. 🧜♂️ |
James did tummy time in the morning. Mom went home and slept for 3 hours.
At 3pm, Mom and Dad did the trach change together without RT assistance. Dad removed the old trach and disconnected the oxygen. Mom inserted the new trach while Dad reconnected the oxygen. Then we handled the cleaning and changed the trach ties and gauze.
James gained weight, he is now 4575 grams (10lb 1oz). His blood gas increased to 84.8, but he also only had 30 minutes to calm down.
Overall he had another really rough night again with barely any sleep. We can't figure out why his nights are so much worse than his days. Right now, it just seems to be a circle of recovering during the Day Shift. Our Night Shift nurse was super helpful in being familiar with BPD and in trying to come up with new suggestions of these we could try with him. He constantly has gas and that seemed to be the major player. 💨
Mom is not going to be able to make it on no sleep again. ☠️
P.S. You can email James your love and support as often as you’d like. Mom and Dad read these emails to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com
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