We are heading back to the hospital to see how Wren has been doing overnight. Due to the internet issues, I may not post till later when I return for a nap.
I woke at 3am when he usually wakes up and had trouble getting back to sleep. I kept worrying about the remaining gradient and wishing there had been just a bit less. Its like wearing pants a bit too tight but not having a weight-loss option. Its the "what happens next?" feeling. Having heart surgery is not something you want to do regularly.
I was also remembering Dr Lewin saying that "heart surgery is a team sport" and I was lying there adding my own. From Wren's perspective "heart surgery is an abduction by aliens". For me "its like a triathalon I haven't trained for". I feel I have been on my feet or sleeping only part of the night or day for weeks even though this is only Day 1 of recovery.
Stanford is great but they don't have very comfortable spaces for families to be with kids in CVICU. Even the "nourishment room" is like the galley on a submarine with only one or two ppl able to squeeze in.
Thanks for the info about Versed. I shall keep talking to him and singing the little songs he likes. I have now drunk my coffee and can drive safely.
Update later.
3 comments:
It's so hard being the parent of a heart kidddo... or a medically fragile kiddo...
our minds never stop...
it can be so exhausting....
OH...I wish that new CVICU wing was open..it's going to have SLEEPING spots for parents and private rooms!
BUT...if your husband is going to be with you the whole time...my husband and I just stayed with Isaac in shifts. Because by the third day...we were TOO tired!
and the versed...Isaac's fav! I did ask a few of the older kids there having heart surgery...and they really don't remember being intubated (which really help ease my heart). I'd just keep my eyes on Isaac's heart rate...and when it started to go up..I'd make them give him something.
I hope they are able to extubate him today...it's amazing how fast they recover once the tube is out!
kathy
Wow, lots of info to catch up on! I'm so happy that the surgery was a success. THANK GOD! I know how exhausted you guys must be right now in every way imaginable. My prayers are with you all. I hope you are able to find a secret comfy spot to get rest. xoxo
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