Update on Manny …
Thursday we were supposed to move out of ICU. In fact, back to the same room 222. But after several hours of waiting, we were
told the floor was over booked and we’d be staying in the ICU another
night.
It’s not a huge deal, just lots of little things. Like there is no potty or shower so I have to
leave the room multiple times a day.
They make me wear the gloves, gown and mask for isolation (that’s hot 24
hours a day!) There’s no way to get
needed supplies (the nurses have to get EVERYTHING). So nothing horrible, just not
comfortable.
But the trial on the Bipap the first night didn’t go so well
so it was actually better we stayed in the ICU so we would have a respiratory
therapist more readily available to help adjust. And that was the right call. The machine beeped ALL NIGHT LONG. It was miserable to say the least. The night was very,very, very long. Manny tolerated the bipap very well
again. He actually went right to sleep
before we even adjusted the machine or his cannula. They were trying to use the nasal prong type
of cannula and that just didn’t work! It
was beeping all night. There are two
levels of alarms … one is a quick beep and says small problem. The other is this full fledged “come here NOW
and deal with this” type of alarm. It would do this until I
would get up, walk over to reposition him and the cannula. Sometimes that would work for 30 minutes,
sometimes 30 seconds. I cannot tell you
how many times it would alarm as soon as I would get in my chair, get my covers
on and close my eyes! And I was the only
one messing with this.
By 4am, the RT came in for his routine check and asked how it was
going. I expressed my concern that there
has to be a better way! So he asked why
we are using it again and I clarified.
He came back a while later with a different nasal mas. 5am we tried it on. Success! Only 3 minor beeps (the kind I don’t
have to get up for) until 8am.
Next we have to work on the mask not leaving “bite marks”. But I have a feeling we are on the right
track. It also assured me we were doing
the right thing by getting night nursing!!
Absolutely no way I could keep up with all of that.
Friday we moved back to the floor … ironically back to room 222, where we
had come from before ICU. I like this
room back here. It’s in the back pod
(quieter). It’s not a corner room (the
smallest) or the middle room (the one with the thin curtains and no
storage). It’s the best room in my
opinion!
I talked to the social worker who is working on nursing and the bipap
machine. At 2pm we were told no problem
with nursing and we were on schedule for Monday arrival of the bipap
machine. At 5:30 we were told there was
no staffing at agency one and I would have to choose another one and that
insurance denied the bipap claiming he’d have to have a sleep study first.
(Which is not correct, it’s just not coded right.) But basically that means … We will not have a
bipap by Monday and our stay was just extended again. Indefinitely.
Health wise, this was the first day we had Manny off all day time breathing
machines. He got tired about 6pm but
otherwise did amazingly well! It was a
big deal that he made it back to his baseline.
And if we had the machine, this gave us the clearance to be able to go
home.
Friday evening, Dan brought the kids to visit and Kaley to say. Yay!
Relief.
Friday night the bipap again went on successfully and relatively
easily. I’d taken a picture of the “bite
marks” from the mask to show the RT so we could pad it and we did. Somehow the mask shifted in the night a tiny
bit so it left an asymmetrical mark. And
he cried quite a few times but overall it was a decent night. I also had to suction quite a bit. (Again, thankful for nurses coming soon!)
Saturday was uneventful with his health.
He technically could come off isolation precautions but I’ve had them
leave them up so that the nurses won’t bring stuff TO us accidentally while we
are here.
The only thing unusual about Saturday was I actually left the hospital for
a few minutes! I don’t have my car here
with me like I usually do (never need it). But I needed food. That’s a great thing about Kaley here … I
remember to feed her which means I remember to eat. (I went more than 24 hours without food the
other day before I realized it!)
In the spirit of asking for help, I put a status on Facebook asking if
anyone would like to take me to the store.
I had numerous offers.
(Overwhelming. Humbling.) And I accepted the one who could get to me
the fastest. So very grateful.
Saturday night … again, successful Bipap.
Very few beeps. He cries “No bi-pat”
when we put the mask on but is asleep in no time. The machine here is actually a ventilator
with bipap settings. So there’s this
screen that shows his breaths in and out and when the machine breathes for
him. It’s crazy how often he doesn’t
breathe! So very thankful he’s going to
get the help he needs.
Sunday morning … he woke up perky!
After only 11 hours (he usually sleeps about 14). I sat him up in bed and he was actually
SITTING. It was crazy how strong he
was. He then turned his trunk a bit to
see Kaley sleeping. He’s NEVER been able
to do any of that. Guess it helps when
you get a good night sleep and only have to work half of the day.
It’s been another boring day. He’s
healthy enough to be home, just stuck here due to the machine issue. So we’re just hanging out in our room.
So we have discovered two more allergies while here. Both are going to be a pain in the
hiney!!
You know the antibacterial foam they use when they walk in and out of a
room? Uh … he’s allergic. It leaves a patch of contact dermatitis every
place they touch. So people will have to
use gloves EVERY time they touch him.
That’s a relatively minor thing but it’s just hard to get people to
change their habits and be constantly on top of it.
The second one is … he’s allergic to his own tube. There’s something about it touching his skin
and rubbing on it that causes a contact dermatitis. The other day I noticed this strange rash but
couldn’t figure out what it was from.
This time it was back so I investigated further. It was the exact length of the tube that was
touching his skin.
Called the IV team and they called the wound care
nurse. The rash isn’t all that
impressive quite frankly but we need to stay ahead of it as his contact
dermatitis episodes turn to cellulitis and to sepsis easily. We have a solution that seems to be
working. So far so good with no new rash
developing.
Sunday night … again, he objected to going on the bipap but
was completely asleep before we even finished putting on his mask. The RTs and I noticed that the machine was
triggering ALL of his breaths. It’s like
he said, “Oh, I’ll just take a little break from breathing.” It was quite shocking to see just how little
he was breathing. At first, the machine
said, 0% patient triggered. After about
30 minutes he settled in and started breathing again and it was 40% patient
triggered. By morning as he was waking
up it was 95%.
The point? He needs
the bipap.
Monday … working on getting all the equipment set up for
home so we can GO HOME. We’re not there
yet but we have made progress.
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