Here's what I left out yesterday. Wait, here's some of what I left out yesterday. Tom has gone back home and I can't verify anything. (But he is MORE THAN WELCOME to fill in the blanks -- be on the lookout for info in the comments.) The cardiologist went over Jane's echo and was happy that what she saw wasn't as bad as she'd feared. Jane's right ventricle is definitely struggling, but the whole picture is not worrisome enough to warrant more poking around just now. (I probably already mentioned this, didn't I?) Um, Dr LR was pleased that Jane is still able to respond to the interventions they've done and the medications they've given her. And it's a real plus that she's made it through the winter and flu season so far. He still has hope that he'll be able to help her. And some other stuff that is now beyond my ability to recall.
Fortunately, Jane is STILL off the paralytic (cisatricurium, for the pharmalogically curious) -- that's 33 hours as of nine o'clock this evening. Take that, Mr Doctor Scary Talk! Her oxygen is still a little north of where they'd like it, but it's the upper limit of acceptable (she's mostly in the 60s). They did need to increase her pressure a little this afternoon to keep her satting well enough to keep her oxygen reasonable, though (for the RTs who might be lurking in these parts, she's at 37 over 12, a rate of 23, and 0 on the pressure support of her natural breaths). Also, they were able to restart her feeds. They're basically priming the gut today and tonight (half an ounce over three or four hours); after that, if she tolerates it, they'll start increasing the amounts. She's got that NJ tube now, which goes past the stomach, so she'll be getting smaller amounts continuously. As Dr G, Jane's usual attending, said today, they don't want ANYTHING making trouble for her lungs. So they're taking the possibility of reflux and microaspirations out of the picture. (No breathing milk for Jane, in affect, thank you!) Oh, and she had a small blood transfusion today. Some fresh red blood cells to help her absorb as much oxygen as possible.
She did peep her eyes open a little this afternoon, but they're keeping her very heavily sedated for the time being.
So. Assuming Jane's able to stay off the paralytic and start taking in feeds, the next thing to tackle: weaning everything. Seriously. Vent support, steroids, nitric (again with the nitric!) and morphine. Here's a fun little tidbit for you. If Jane needs to be on morphine much longer, they're going to switch her to METHADONE. Yes, the very same drug the junkies wind up on to get off the smack. I am... this is... I mean, what do you say to that? Of course I want her getting manageable pain medication, but METHADONE? Seriously? I just... fine. Fine, bring on the METHADONE!
I just want her to be Jane again. She's so puffy and out of it right now that I don't know what to do or think. She held my fingers for a while today, and that was the most real connection I've felt from her in a week. But, hey, I'll take it. And be grateful for it.
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8 comments:
Well, if you're supposed to be checking for cues, I think Jane's giving them to you...she's fighting!!! Poor little thing must be exhausted with everything she needs to do...hopefully the sedation is helping her with the energy she needs to keep up that fight. The picture of her holding your finger is precious...I'm sure she knows you're there and she's drawing energy from you. More prayers and hugs headed your way.
Oh, my goodness. So glad there's some encouraging medical news. So much hoping that you get some real snuggle time with her soon. You must miss her being really present (and not zonked out) so much. That photo was *really* blurry on my monitor...
Tomorrow = another day, hopefully full of encouraging signs and chances to cuddle your baby.
Keep on keepin' on Jane. You are the best, and you have the best parents and big sister ever. They love you soooo much. Give them a hug for me!
Mary Lou
Dear Tia,
The only things I think you missed is that the respiratory plan they are using was actually developed at Denver Children's Hospital. That, and Dr. G said today that despite the higher pressure support they are not seeing any evidence that it is negatively effecting the lobe in her right lung which is hyper-inflated. As usual, your mind is as sharp as a diamond. And your heart is as big as all of Boston.
Tom
33 hours off the paralytic? Well, that is certainly good news! I missed entirely that she was off it.
Everytime I read one of your posts chock full if medical info, Tia, I am blown away by all that you have had to learn and absorb--I obviously can't follow all of it.
This sounds like a lot of good news to me, after yesterday's sobering post.
Go, Jane, go! But in a relaxing way, you know? I don't want you to tire yourself out. Just hang in there.
Yay for steps forward! You show them what you're made of, Jane!
TT Vanilla/Rachel
This is encouraging and I'm grateful for you to have some sense of relief and forward movement! I, too, love the picture of her holding your finger. I think that sums up SO MUCH.
Your continued sharing is a boon to my day - I really appreciate the updates. Continued prayers and thoughts will be flowing.
Tom's post was so heartwarming; I just wish you both all the best as the plan continues.
Cindy
Don't worry Tia, she will turn the corner and start sailing forward. She is fighting and will continue to fight. She is in the best care right now with people who know her condition. They did wonders for Jacob and he as well is on that same vent strategy from Denver. Seriously, our kids need to stop playing this game follow the leader/copy cat, LOL!
Jacob got switched over to Methadone as well and it is better than the morphine. A morphine fix is horrible and not easy to wean. Trust me, the battle was not pretty. Since on the methadone he has been easier to manage the weans, so don't be scared :-) It will be better for her.
If at all you have any questions of how Jacob handled any of this or what to look out for please feel free to ask. He also has the NJ tube in place, which is good as it takes out those issues that may be harming his lungs.
Today we are moving across the hall to 7 South and out of the NICU. Maybe you might get his old bed space in the room, LOL! We know how she seems to grab his prime bed spaces of peace and quite whenever he leaves, LOL :-)
Cheers and good luck! We are praying for jane!
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