***From Facebook**
I'm officially declaring today "The Day of Insanity."
Not only have Noah's breath sounds not improved on a boatload of IV
steroids, but he woke up wheezing this morning too. Cue the nebulizer
treatments.
His chest looks just absolutely beyond awful and I
spent a great deal of time back and forth on the phone with our surgeon,
Dr. B's nurse, and the hospice nurse. The surgeon came up with a different
way to do dressings for now so that the area can "breathe" a bit better
and said that he thinks Noah needs to be in the hospital because he
believes that this is a systemic problem not just a skin problem. He
asked Dr. B to order a bunch of labs and asked us to go straight to Dr.
B's office as soon as the labs were done.
Of course, we didn't
have the appropriate tubes for some of the more unusual labs so I went
to the hospital, got the tubes, came back, helped our new nurse draw the
labs, went back to the hospital and dropped of the blood, then came
home and got Noah to Dr. B's office just as the lab results were
starting to roll in.
Noah's liver functions came back even
worse than they have been. At this point they are more than 15 times
higher than they should be. His PT/PTT are right at the high end of
normal.
While we were talking, my phone rang - I answered
because I saw that it was our pulmonology nurse. She was calling with
the results of Noah's sleep study - he's retaining CO2 and needs to be
on BiPAP. Lovely.
I spent quite a while talking to Dr. B.
Noah is presenting a lot of problems that don't seem to be related -
still running temps and having breathing problems despite quite high
doses of IV steroids, a seeming inability to heal anywhere (or at least
taking FAR longer to heal than he should), an increasingly sick liver,
sick kidneys, labs that say he's ill but all negative cultures, and now
the finding of CO2 retention.
Dr. B had spoken to the
Infectious Disease specialist who believes that our go-to big gun
antibiotic may be becoming less effective for Noah - this drug can get
to the point that it knocks back infection without actually eradicating
it. Dr. B wanted Noah admitted so that some other newer big gun
antibiotics could be started under close supervision and BiPAP could
also be started quickly. We left his office with the belief that Noah
would be admitted to Greenville tomorrow.
Dr. B called back
tonight and said that he hadn't been able to speak to any of the
Infectious Disease specialists who "know" Noah, and that he ended up
speaking to one of the new partners. That doctor wants to give the new
dressing technique some time to work but if it does not work in a day or
two, he wants to stop both of the antibiotics Noah's on and switch them
both to new drugs at home. I'm the reigning queen of "Oh, yeah, let's
treat this at home!" but I also feel waaaaaay out of my depth here -
like my Mommy Radar isn't even working because this is all so unusual.
I'm OK with giving it a couple of days or whatever and I'll be thrilled
if we can just get this to improve without changing up the meds. On the
other hand, I won't balk at admitting him if that's what we've got to
do.
The area around his central line is looking far, far worse
even than it did several hours ago. There is an area about 5" by 6"
where almost all of the skin is blistered and raw and oozing blood. His
new line incision keeps draining tons of serosanguinous fluid and all
of the skin the fluid touches gets raw and blistered. Dressing changes
are agonizing for him and we're having to do them every few hours
because the serosanguinous fluid soaks the dressing and loosens it up.
Other than that, at this point Noah himself still doesn't look really
bad. We actually woke him up and took him to the Fall Festival at
Northside Baptist - he had a BLAST and no one looking at him could ever
have imagined just how sick he really is right now. His bilirubin
levels are OK so there is no way to look at him and see how sick his
liver is. I'm very, very thankful that he is feeling relatively good
and was able to go have so much fun tonight. I'm concerned but honestly
not deeply worried - like I've said, our livers were designed to
regenerate and I think that we can get his liver looking MUCH better if
we can clear up this awful skin issue and get him off of antibiotics.
Dr. B is going to call pulmonology and see what we need to do to get
the BiPAP started ASAP. The pulmonologist had planned to set it up when
we go see him in a few weeks but Dr. B wants to use every tool we've
got to strengthen and help Noah - if this is going to help him rest
better and be less tired, then there is no reason to wait at all. I've
got to say I agree 100%.
Please keep praying. I can't tell you
how much we appreciate it. I really, really, truly think this is just a
(big) bump in the road but I also realize that Noah could turn on a
dime and become very seriously sick. We need to get this skin infection
cleared up so we can get this little guy off antibiotics and let his
liver start getting better.
Blessings,
Kate
