Thinking back to my last post a little over two weeks ago, I
don’t feel like we’ve done a lot, at least in the way of progress, but our
little goofball truly has. Last major update, Riley had been struggling on his
BiPAP, and not really able to come off of it at all, and then he showed us
quickly how bad off he was by tanking and requiring going back on the breathing
machine on Sunday 4/9. Since then he’s had a brain MRI (probably like his 6th
or 7th…), been into the OR with ENT, CT scan, and back into the OR
with ENT. As of mid-day Monday, we were able to successfully remove the
breathing tube again, and hopefully this time it sticks, and sticks well so we
can work on going home sometime in the next few weeks. My hope, and told him to
make it his goal, is to be home before Mother’s Day…that’s all I want from him
this year.
His MRI a few weeks ago showed that there is still
progression in his underlying degenerative neuromuscular disease. His last MRI
was in early July, so progression from then is minor, like it basically has
been with each scan, but still there. Nothing to indicate specifically
correlation to his airway collapsing the day prior. Thankfully. Because of his
stridor (humming sounds during exhalation), and airway collapse, we pushed and
finally got ENT to take him into the OR to evaluate his airway. Much to their
surprise (not ours), they found something! He had an abscess on his left vocal
cord (which led to a staph infection). They did everything they could to clear
him out, and he went through a course of 10 days of hard core IV antibiotics,
just finished over the weekend. The CT scan of his neck last Monday showed a
little bit of something still in the area, so he went back into the OR last
Wednesday. The infection is thankfully gone, and all they had to do was minor
granulation tissue clean up. ENT gave us the green light that he was ready for
extubation shortly after, which was a green light for us (and ICU docs) to
start working towards extubation.
Thankfully over the weekend as he started finishing antibiotics,
his goofy personality started coming back and he started to seem more like
himself. Was able to fairly easy to get him off his sedation medication and get
him in a good spot with settings on the ventilator that mimic his BiPAP
settings. X-ray early in the week looked to be one of the best I’ve ever seen
from him. So, Monday around noon, myself, both grandmas, nurses, RT and docs
gathered in his room to help him pull out his tube. He was pretty happy about
it leading up to it, totally showed us that he was more than ready. Mama doc
got to help get the tube out and suction out all his secretions so he could
take some big breaths on his own. I had given him “our talk”, regarding that he’s
allowed to cry because it may not feel good (especially taking the tape off his
face, which he hates), as long as he takes some good deep breaths, which we
discuss every time. He listened really well and rocked it, best extubation I’ve
seen from him!
First few hours on Monday after the breathing tube coming
out was a little rough just from a stand point of him having extra secretions
and keeping his oxygen levels in check. Wasn’t overly surprised, as it’s a big
jump for his body to transition like that, his brain takes a bit to catch up
realizing that it needs to do some more work than it had been doing. Tuesday,
he was super comfy all day long, and secretions were much more manageable. Last
night sounded like it was fairly quiet, I got to sleep at home for the first
time in days, as Chris has been sick with a bad cold. Thankful both of my boys
are starting to feel better.
Yesterday we had hoped would just be another day of rest. Somehow,
he missed an early morning respiratory treatment (which has been addressed), so
he seemed a bit behind on the amount of secretions and little harder work that
he’s needing to do to catch up. He napped pretty comfy in the morning, but kept
me on my feet most of the rest of the day helping nurses, RT and docs keep his
numbers stable. Tons of junk that seemed to come out of nowhere, especially
after a restful day the day prior. He basically needed respiratory treatments
constantly at one point to keep moving stuff and getting it out of him, and
extra oxygen to keep his numbers from dumping. I could tell that docs looked a
little nervous about how he was doing, knowing that they had re-intubating in
the back of their heads if we couldn’t get him under control. We went up on his
BiPAP settings to open up his lungs more, and kept on top of respiratory treatments
every two hours (so you know he slept amazing through the night with that….ha).
Managed to keep him stable so he’s still on BiPAP, and
looking much much better today. No extra oxygen needed, but going to stay on
the bit higher settings to keep him well opened up. Secretions are better too,
he doesn’t have a constant rattle in his chest anymore, and he’s not dumping
numbers at all, unless he’s pissed. His oxygen went down into the low 80’s
after his 9am respiratory treatment and people were nervous about him looking
like he’d start repeating yesterday. But, rest assured mama knew there was a
different reason, he was mad about needing to be changed. Fixed that, fixed his
numbers. When he starts setting off alarms for specific reasons to get
attention and get what he wants, verses actually being in trouble, means he’s
starting to feel better! Knows how to do it well at home 😉
Today we’re going to try and only do respiratory treatments
ever four hours, to allow him some rest in between, and hopefully set him up
well to maybe start small breaks off his BiPAP tomorrow. Labs and supplements
are continuing on a daily basis, but seems to be more stable now, which makes
sense as he’s starting to feel better. Actually, able to back off some of them
today. So far so good in the decrease in his ketogenic diet ratio, so hopefully
we’ll be able to stick where we are at on that to go home on. Other than that,
not too much else to report! My guess, the soonest we would be home would be
later next week sometime. He needs to be able to successfully be off BiPAP for
6hrs before even leaving the ICU (from just a respiratory standpoint).
To our wonderful family, friends, neighbors, co-workers,
nurses, and doctors…thank you again for all your love and support. We certainly
didn’t anticipate coming in with a “stomach bug” and being here for well over a
month (with still a chunk of time to go)! My hope is we’ll be home sometime
next month (which is somehow next week already), and he can get back to
preschool for at least a few weeks before SUMMER BREAK……………..
No comments:
Post a Comment