We went home around 9:30 last night and went to bed, exhausted at about 10 or 10:15. Roxie, our dog, woke up at about 1:30 and Laura went out and sat on the deck with her for a while because she couldn't sleep. (I slept thorough it) Then I woke up, wide awake at about 2:15 am. Roxie needed to be let out again, which isn't typical, and I just couldn't sleep. I had a very strong urge to call the hospital but tried to sleep. At about 3 am we decided to call just to check in.
Every other time we've called at night before we go to bed or first thing in the morning, they say, "he's just been sleeping- he maybe needed his pacifier once or twice, but otherwise slept". Ashley, his night nurse, said that actually he'd had a pretty rough night and had been throwing up continuously starting at around 1:30 am (also unusual) but had just fallen asleep. We asked her to call us the next time he woke up and then cried and talked until about 4, when we fell asleep again and no one called us so we slept until about 6:30 am.
When we got here this morning, Ashley said they had tried to give him Tylenol and he puked it up. Then they had everyone hold him and try to soothe him, including Dr. Williams who was the ICU doc that admitted him. No dice. He finally did fall asleep but not easily. One of the nurses said, "he missed you" or something to that effect, which felt like a dagger to the heart. I'm not sure if we'll sleep here tonight or go home and have them call us if he wakes up miserable again.
He's okay this morning, but definitely more grouchy and clearly doesn't feel well and his stats aren't great.
We're trying to set up a meeting with the ICU attending, the Cardiology attending and social work to talk about our options. Whatever they are they don't seem good. We both feel like we did the first week we got here- like a truck ran over us and then backed up and did it again.
It's not likely that he would have a complete recovery, but we haven't heard that it's off the table. He seems to be getting worse, which is scary and sad and horrible. What we need is for him to stabilize and then get better. I really hope that's what happens.