Noah is pretty sick. I'm running around like a chicken with my head cut off, so I'm just cutting and pasting three updates from Facebook.
UPDATE ONE from FB (last night)
Noah
has been hurting a good bit more than usual today. He gets one
long-lasting IV narcotic every 8 hours and has a continuous IV drip of
another. There is a button he can push to get extra doses of the
continuous drip medicine if his pain breaks through these regular
measures (there is a timed lock-out so he can't overdose).
He almost never complains that he's hurting even when he's in obvious pain
but today he told me a couple of times that he was hurting and needed
to push his button. A couple of hours into his nap he was curled up in a
little ball the way he only every does when he's having abdominal pain.
A couple of extra doses of pain meds later he's finally sleeping more
comfortably.
In spite of it all he was as sweet and loving as ever today. I honestly don't know how he does it.
Please pray that today was just an off day and that he'll be perkier
and have better pain control tomorrow. His labs are all just a little
bit off kilter which could indicate he's starting to come down with
something - we need our little guy to stay strong for his birthday in
just a week and a half!!
UPDATE TWO from Facebook (mid-day today)
Noah has taken a turn for the worse.
He woke up this AM (after 18 hours of sleep) with a really junky cough
and was as white as a sheet. He seemed to feel OK and stopped coughing
after we used his rescue inhaler so we went ahead and took him to art
class since this is the last week. (He sits pretty isolated from the
other children just because of where his wheelchair sits, so I wasn't
worried about him sharing his cough.)
Near the end of class he started getting a very tight cough and seemed
warm to the touch. His awesome teacher offered to bring Sarah home so
she could finish class. He is indeed running a temp. We've started
rescue steroids and IV ibuprofen. The pulmonologist has called in
nebulizer meds - please pray he can tolerate having the mask on. We are
waiting to hear back from Dr. B who we anticipate will order a full
battery of labs.
He doesn't look terrible at all - not great,
but not scary. I honestly have no idea if we are sailing into a typhoon
or a little squall. I'm just thankful for a God who knows and a
fantastic medical team who is incredibly responsive. We are able to
make things happen from home exponentially faster than a hospital can -
before we started keeping him home for all infections, this fever would
have been an automatic admission. By the time we got things arranged,
waiting for Jeff to get home from teaching, and got him to the E.R.,
more than 3 hours would have passed . . . . then hours of waiting for
labs to be drawn . . . hours more to admit him, jump through the hoops,
wait for meds to be ordered, etc.
It's not unthinkable that
if we went to the ER, we'd be 12 hours or more away from starting
antibiotics. We can start them at home within 3 hours or less of a
fever spiking. It's so clearly in his best interests, but so few people
have the kind of support needed to make this kind of thing happen and
we never stop being thankful.
UPDATE THREE from Facebook (this evening)
I
have been running like a crazy person today going back and forth to the
pharmacy (there was an issue - now resolved - getting Noah's nebulizer
meds), getting labs to the hospital, and fielding calls to and from our
pediatrician, pulmonologist, infusion pharmacy, etc.
Initial
bloodwork looks very, very viral. It's clear he's sick and probably
sicker than he looks. White cells, lymphs, platelets,
etc. are dropping with some quite low. I wasn't really surprised by
any of THAT. Given the pain he's been in, I shouldn't have been
surprised by his urinalysis, but I was. Dr. B called back a little
while ago and said that Noah's urine is "as dirty as all get out."
Great. A bladder infection explains the tummy pain that we were
fighting all last night, but it really, really stinks for him to be
fighting both a bad virus AND an infection (or infections) in his
bladder.
This means that since lunch we have added or are about
to add IV rescue dose steroids every 6 hours, IV ibuprofen ever 4
hours, nebulizer treatments every 4 hours or as needed, one IV
antibiotic once a day that he is allergic to and that requires pre-
medicating with a double dose of IV benadryl, another IV antibiotic
either once or twice a day (haven't seen that one yet) AND IV
antifungals twice a day. That's on top of about 30 "normal" doses of IV
meds every day.
Even with a 3-lumen central line that ends up
with 9 total IV ports, it is going to be a stunt fitting everything in
on time and without running incompatible meds through the same lumen.
Times like this seem like such a juggling act.
Having said all that, Noah doesn't look terrible. He doesn't feel good at all but he isn't scary sick.
Please pray that Noah doesn't get sicker, that I can finish sorting out
a new med schedule, that the combination of ventolin nebs (makes you
JITTERY) and rescue steroids don't turn my sweetie into a tiny
terrorist, and that he is all better in time for his big day on the
10th.
Blessings
Kate
