So many people came by today! Here's the list (so far):
-the resident, for his daily assessment
-the nurse, every four hours for vitals and two blood draws and one dressing change and probably several other check ins
-the team, for rounds
-SLP, for a swallow study
-a sonographer, for an echo
-Child Life, to check in and then again to bring new toys I requested
-OT, for a session
-Nutrition, to make a plan for Job's tube feeds
-one of our two primary transplant nurse coordinators, for a training
-one of our four primary transplant pharmacists, for a training
-the IV team, to remove Job's PICC line
-someone on the patient experience team, to take a survey on our experience in the CICU
-the attending, for his daily assessment and to answer any questions I have
-a fellow from Otolaryngology who was quick to order a scope after listening to Job
3:16pm update:
Over the weekend I started giving Job's meds and starting and stopping his feeds and taking his vitals. These are all things I will get to do daily at home.
I had one training on Friday and two more today and have two scheduled for tomorrow with the transplant nurse coordinators and with pharmacy. Can I recognize signs of rejection? Do I know the side effects of his various meds? And so on. I have a binder and flashcards and all the notes I've been taking on transplant since June, so I've been studying away when I'm not playing with Job. I read and reread the binder so many times this summer that I did feel pretty comfortable about these transplant specific things, but I'm really appreciating all this hands on training too.
Well, except for the things I've already done before. Do I really need to do a lovenox injection training again? I did it last time we needed anticoagulation and I've been giving all his injections this weekend. Do I really have to take out his NG tube and reinsert it? And so on. I understand why hospital policy exists buuutttt I also really don't want to abide by it every time when *I* think it's excessive. We'll see what flexibility they will allow me - it will probably depend on how the nurses think I'm doing with Job's care.
Eventually this week I'll have to do a 24 hour care, where I do all of Job's cares for that time period to show I can really take care of him at home.
12:06pm update:
Job had an even more disastrous SLP assessment today. His swallow is getting worse and worse as each day goes on. But now we're going to get Otolaryngology involved, which I wanted to do last year and have really wanted to do through this hospitalization. So I'm disappointed but trying to stay hopeful. Oto can do all sorts of things to optimize Job's swallow if needed and can give the msot clear answer of what is going on.
I've wanted them to take a look at Job's throat all year because he's never quite been right following his vocal cord paralysis during the Norwood surgery in April 2016. He did learn to eat and drink well, but he's had weird swallow/vomiting issues and he's quite speech delayed as well. But when I started asking for Oto involvement this summer, Job's heart started failing even more quickly so that obviously took precedent.
When he started coughing and especially when he started aspirating, I started asking again. I'd love to do whatever we can while inpatient because outpatient care is harder to arrange and happens more slowly... but if they couldn't see us inpatient for a week then I'd rather go home and do that outpatient.
So the thought it that his left vocal fold was paralyzed but his right vocal fold was overcompensating and worked to close off his airway from aspiration while eating these past two years. He learned how to make do.
But during intubation, the vent tube was down his throat pushing both vocal cords to the sides. So even after he was extubated, his right vocal fold still has to recover from that trauma.
Child Life brought by new toys, so we're enjoying those too. The same toys in the same room for the same two days was getting a little stale. I didn't realize how much I take environment for granted. When we're at home our environment is constantly changing so even though our toys aren't, we don't get as bored as quickly with the same toys.
And I was just thinking about the nature of contentment because I think this week will be a little hard for me as I long to discharge but still need to jump through the hoops of all the training we need to do.
9:00am update:
Another area where I've been receiving frequent questions is regarding Job's cold.
His cold hardly affected him other than to make his providers wear gowns and masks and to not allow the big boys to visit.
His doctors said that his response (non-response?) to this rhino virus is really really good news because he should have been super set back because he was so immunosuppressed.
Since he was strong enough to handle it while so immunosuppressed, he should be pretty strong and safe this winter (relatively speaking) because he'll be on less immunosuppression (probably).
We all saw him getting sicker and needing a transplant this summer, but so many kids gets so much sicker as they wait for a donor match and are then weaker going into the transplant and struggle to recover from surgery quickly and then also struggle to recover from a cold. This is one of the reasons SCH works so hard to list kids "early" so that they perhaps get their match "early," before they're really really sick and weak.
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