Aaron's room in PICU His pumpkin friend is over on top of the vent, peaking over the edge. |
Sunday, October 30, 2011
Much going on and I’m still trying to organize the
thoughts so they are somewhat coherent.
First of all, he had a quiet night as far as sleep goes,
but when he’d go to sleep, his sats would drop after a little while. So up with the oxygen and out came the bag
and they would bag/suction him in an effort to loosen any plugs and move them
out. It happened at least three different
times that I know of (can you tell I didn’t get a whole lot of sleep?). Then this morning, he decided to go all out
with it and went into the 70’s.
Yuck. In addition to bagging, the
RT decided to go after his nose. Suffice
it to say that what came out of there was double-yuck. And his sats improved. So I guess, even though he doesn’t use his
nose to breathe, really, he doesn’t at all, it must influence it. So we got him back and within the hour we had
weaned back down to 85% oxygen through the vent instead of 100%. (By the way, what we breath, normal room air,
is about 21% oxygen.) So that’s one
thing.
The sign outside our door, warning any staff that they need to take precautions so they don't take any nasties back out. |
Next on the list is that his trach aspirate, the test
where they pulled cells from the lungs through the trach, is starting to grow
out. And it’s got our good ol’ friend, pseudomonas,
a lot of it. He’s colonized with it,
meaning he’ll always have some come back, but this time it’s way more than it
should have. Apparently, they’ve been
having a real party down there and have gotten out of control. So they’re putting him on another antibiotic,
an even stronger one, just to make sure they get it until the lab can figure
out exactly what this strain is sensitive to.
So we’re not sure it’s pneumonia, although it may be, but it’s at least
a tracheitis, or bacterial infection in his trachea. (I think Word needs to add a medical
dictionary. It doesn’t seem to recognize
the words I use way too often now.)
Getting his echo. |
Third, we’re going to get an echo. He’s just not budging on his oxygen, and he’s
on so much. They just want to make sure
his pulmonary hypertension is not getting worse, although I’m told that it will
be higher just because he’s so sick.
Fourth, but probably not until tomorrow, they’re going to
talk to neurosurgery about his MRI ten days ago. It’s just different enough, and we’re a
captive audience, so we’re going to touch base with them.
Jammie pants. Hoping they make the transition from casts a bit easier. |
His casts came off yesterday, and he’s not so sure about
that. His little legs are very
sensitive. They haven’t been touched,
except by casting material, for 12 weeks.
It really bothers him to have them handled. Right now he has little jammie pants on in an
effort to minimize the stimulation, or at least try to provide a buffer
there. I’m also going to contact
Shriners tomorrow and see if I can pick up his braces. We’ll have to go back for final fittings
before going home, but at least he can have something to protect all this work
until we’re out of here. Which,
unfortunately, doesn’t look like it’s going to be anytime soon.
Church was wonderful.
As was a special video a friend sent me by e-mail a few days ago. I wasn’t up to seeing it until today. I’ll write more about those later. Perhaps after a nap…
We're praying for you Aaron! Tell your Mama to give me a call if she needs anything, k?
ReplyDeleteTammy and Parker
www.prayingforparker.com
Prayers for your little man! I wish I'd known you before I moved from Utah, I am also friends with Charlotte and Lily's mommy, even went to Lily's funeral. My little boy has DS, but he is trached and vented at night. I just moved to California. Praying your little man gets well soon!
ReplyDelete