--Everly Brothers, "Wake Up Little Susie"
Last night was another quiet night for Jay. The docs are working to decrease the support he gets from the ventilator and his medications, but they are taking things very slow with him. In rounds this morning, his doc described the changes not as weaning his meds, but very slowly "tweaking" them down. So far he is off two meds, and only has 438 to go (okay really only about 12 more).
In the meds department, one thing I think is very interesting is that there is a pharmacist on rounds each morning. He is there to make sure that all meds are working together and that dosage changes (er, tweaks) are appropriate. Rounds usually include the attending ICU doc, a doc from heart failure team, nurse practitioner, respiratory therapist, 2-3 fellows, his nurse, pharmacist - thankfully ECMO specialist is no longer on that list. And us. That is one thing that is really cool: they let us stand right there with them and hear the discussion, ask questions. It's a very open process, and I am really grateful for it.
They are allowing him to wake up, which is great to see that he can open his eyes, look around, move his hands and feet, and even grab at his tube and lines. The down side is that he is quite agitated when he does wake up. He will grimace, open his mouth to talk, and sometimes sheds a little tear. It's absolutely heartbreaking to see him so upset. He's trying so hard to communicate with us - he's pointing at things and trying to talk. We are trying to be reassuring and comforting, and the docs and nurses are trying hard to give him additional drugs to help him relax.
He's apparently immune to morphine ... guess all those years of giving it to him at night to get him to sleep gave him some serious tolerance. I'm kidding, folks! No need to report me to social services. (See, I must be doing okay - still making pitiful attempts at corny jokes!) But seriously, they have had to give him more and more rescue doses, and each seems to have almost no effect. Last night, they finally went to pentobarb, and just after midnight he finally relaxed and went to sleepy-land. So we finally decided the nurses could watch a sleeping baby and we did the same.
Thanks to all of you for your continued prayers. Your comments and notes keep us going through the long days.
7 comments:
So glad to see that your corny sense of humor is still in tact. That tells me that you're hanging in there!
I know you are a long way from home but sure sounds like God led you to a place where Jay is getting wonderful care from a lot of skilled folks. And they let you in on what is going on....
We continue to lift Jay to the Great Physician.
Vickie
Sounds like everyday he's getting better. How's the fever today?
Yes, how is the fever? I know from your perspective (I could tell from your "patience" post) that it's so hard to wait on all the changes...I know as Mom watching over sweet baby that has to be so tough! I have been amazed (and just so grateful) for God's unending answer to prayers. We will keep lifting Jay up and expecting miracles from above! Love & Hugs...Blair
Who needs morphine anyway? Glad the other medication did the trick. Sounds like Jay is making steady progress. I am so glad. I hope he can get to the point real soon to communicate better with you. Still praying for that heart strengthen and he tolerate the "tweaking" of the meds.
How is Luke? I haven't heard whether he got over his cold symptoms.
Love,
Aunt Ali
Jen & Derrick,
Nothing is too minor to be of concern. Nothing is corny when it expresses some assurance. You are doing fine, and this difficult time, and what a Mamma should do.
Notice all, assure comfort, be there to humor....Motherhood just does this amazingly well, a Daddy could too, I thought...Whew, was I in need of enlightenment!Keep it up Mamma, Dad look over the shoulder, comfort Jay the Toolboy, with touch and song. Mamma can deliver the goods, but not alone!Peace, and prayers from a magnitude at FPC+, most softball teammatesyou would recongize but not by name, Derrick.
a&u....aka #8fpc
So you had me at hello...er...the title of the posting. Glad to hear from the latter posing they are managing to keep Jay sleepy. Sleep is good, take it from a connoisseur...! A lot of healing and good things come when you rest. And the fact the fever is still at bay is wonderful news too!
Sending love and prayers for blessings and love in the days to come!
xoxox
SUSIE...I'm Awake I'm Awake...OK?
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