9:36pm update:
We're keeping Job on his muscle relaxant tonight to keep him calm so that he can settle into all of the changes that happened today.
3:50pm update:
Today has been a good day. Job has made lots of very small gains. His BP is good, even being on much less support, his HR is good, but they want to keep pacing him to maintain good function and profusion. He's peeing so we're starting to see progress in his fluid balance. Yay!
I will probably never stop saying this, but it is SO weird that Job has four chambers and that HIS left ventricle is doing well. But apparently that's pretty common because the left ventricle is such a powerful workhorse and can just get started and pump well.
But the right ventricle, which is now pumping blood JUST to the lungs to be oxygenated, is fighting hard against the high pressures in the lung arteries. These high pressures are because Job's lung vessels have been compromised from his past surgeries, and particularly his Glenn anatomy (which is very stressful to the lungs). This is why sildenafil was always so helpful: it dilated (made bigger) his vessels to allow for greater blood flow to allow for greater oxygenation. There wasn't anything "wrong" with his lungs originally, but over the last 2.5 years they have been so adversely affected that they are providing extra resistance to for his right ventricle right now.
So this new right ventricle is working extra hard to overcome this resistance. It is currently being assisted by nitric oxide, which is a vasodilator that does not lower blood pressure (like sildenafil did). We want Job's lungs to get healthier so his right ventricle can get healthier.
Also, the heart Job received was pretty small and so we're asking it to work extra hard right now to accommodate the needs of a larger body. It will apparently learn to do this, but needs some time to acclimate, which is another factor as to why we're seeing those lower numbers.
1:07pm update:
Job's now being paced at 150 and started a very low dose of diuretics to draw off some of his extra fluid. They'll talk at afternoon rounds about taking off his muscle relaxer and letting him move if all continues to go well.
They did a second echo but it's really hard to see what they need to see regarding heart function, especially on the right ventricle that they're watching most closely.
10:17am update:
I was asking our nurse and the sonographer lots of questions and I have to write down some of what they said, otherwise I won't fully process it.
I knew that we wouldn't be talking about extubation soon but I was wondering about what needed to happen first, before we could talk about it. Job has always needed a lot of respiratory support after other surgeries (and that whole 11 months on oxygen thing), so our other post-op courses have been often focused on trialing off the vent and so on. I think of it as this long, excruciating process in and of itself because it has been for Job.
But actually, this time around he's not on much respiratory support. We're medically suppressing his ability to breathe on his own, of course, because we're trying to take away as much work as we can to let him heal from surgery. But he really doesn't need the vent for respiratory support right now.
What he needs, though, is all of this vasopresser and pacing support, and while working on those issues, it's really important to have a tube as a precaution in case of an emergency.
I think that is SO cool and it's so different than what we've done before. I absolutely just assumed that he was on high amounts of vent support still, like he was Thursday night after coming out of the OR. I hadn't bothered to look at the interface or ask, but they weaned down right away.
So eventually whenever it is time to extubate, there won't be days of weaning down on support. Now, I've already heard from I think 5 different people that extubating a 2 year old is the hardest age to extubate. So it won't be easy. I think #becausetoddler has been my mental hashtag for a lot of the things in Job's life these past six months (for example, is he eating less because he's in cardiac decline or #becausetoddler?) so it's kind of funny to me that even when in the ICU this is still an issue. I mean, why did I think it wouldn't be?
Then also, the sonographer said that, as they use sound for ultrasounds (and the echo is just an ultrasound of the heart), it's especially difficult to echo someone after heart transplant because sound can't travel through air and, post-op, there's a lot of extra air in the chest cavity. So sometimes echos really can't show very much, post-op, but that sometimes even just 12 or 24 hours later, they can get a really clear image. It just depends on the kid.
9:38am update:
Rounds are my favorite part of the day. I, of course, want to know the plan, but I also learn so so much as the fellow and attending interact and all the other departments weigh in.
Basically, we're going to try to peel off support today, as Job allows. The priority is maintaining his blood pressure and making sure his heart rate is in sinus rhythm and gradually decreasing. There's some concern of acute kidney injury but that will be assessed through the day. His neck wound looks pretty good but needs assessed through the day. His temperature needs to stay down. He may get a trial off the muscle relaxant. It's highly unlikely extubation will happen today or tomorrow because he's still on such high hemodynamic support.
8:45am update:
I tried to get a picture of Job's room but it's hard to capture all of the things around his bed. I took this photo standing by the nurse's computer.
I'm spending much of my time sitting beside him, under those two horizontal bars you can see on the wall in the above picture.
The foot of his bed is pointing out to the hallway and to the "office" where the attendings sit (well, when they get to sit). Since Job is so critical, he gets prime real estate right under everyone's nose. When he eventually improves he'll move rooms, closer and closer to the end of the unit, away from the attendings.
The head of his bed is pointing out to the window, which has a beautiful view of fall foliage (that just makes me so happy every time I see it) and Lake Washington and Mt. Rainier (if the fog were to lift).
Under the window is a couch that turns into a bed for parents to sleep on. There's a TV and a cabinet for us to use as well. We can't eat in the room or use the bathroom, but there's a parent lounge and bathrooms with showers at the end of the unit for our use. So it's a pretty comfortable place to stay, actually. Seth and I have always joked that it's like staying in some fancy Seattle hotel with a gorgeous view.
I love that it's so close to Job's bed. You can see it's just 10 or so feet from his head:
So there you go! Second only to the question "how's Job doing?" has been the question of what his room is like/our accommodations, so these photos are to answer that question.
6:30am update:
Job had a relatively boring night. He started to wake up from his sedation around 3am but was uncomfortable so they put back under. He made a lot of progress weaning down off his vasopressers but then when they tried to pace him lower his blood pressure dropped. So he's back up on his pressers (though not as high as yesterday) and back up on pacing. That's the game though.
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