Messy Miracles, a good analogy for our children. Anyone who knows us, life here is usually messy in one way or another. We don't focus on the past messes, just learn to deal with the one at hand and move on. But sometimes, those messes are where the real family moments happen and where true, unquestionable bond of love can be found.
Monday, August 11, 2014
How Hot Can You Get???
Even at 106.1 he was trying to smile in the ER.
That was the question Sergio decided he was going to try and
answer for us Friday evening. Now, this child has gotten "hot"
before, up to 106.5 and I don't really even bat an eyelash, as long as he's
getting the medical intervention he needs. . . but, Friday was a different
story. We landed in the ER at 3:00 am due to a fever that was moving rapidly
and he was looking very sick, very fast.It earned him a trip to the PICU.During the day the docs and nurses kept saying how good he looked,
despite the fact that I kept saying it was highly abnormal for him to sleep all
day and his heart rate was very high for him.At 7:10 pm he decided to see how hot he could get.
He had just reached 107.3
107.3. That's how hot he can get. I pray that's the
hottest he ever gets again. It was the highest temp of the new PICU,
where we were thank God when he pulled this little stunt, but not the highest
of the hospital. The record was 108.1 for a little girl with a massive
abscess in her abdomen. They drained it and immediately she recovered and
was on her way. That's impressive. Sergio's wasn't so easy. He shook harder than any seizure I've witnessed.He cried out in agony as his body was
violently put through a temperature change of over 8 degrees in less than 15
minutes.He turned purple as the blood
vessels clamped down to preserve his organs and his heart rate sky rocketed to
over 200 beats a minute.Yea, he spooked
a few diehards in the PICU Friday; including me.
It's the line again. That damn, lifesaving, life giving, and
potentially life taking line; the one that feeds him because his gut just
refuses to work for some unknown reason. The line that keeps him growing,
thriving, hydrated, and fed. Pair that line with a gut that is full of
bacteria, as we all are, and a gut that likes to just share those bacteria with
his blood stream, again for some unknown reason, and you have disaster.
These disasters happen about once a month again. We do get breaks
(the longest one was 18 months!) where he stays infection free, and then bam!!
We get stuck in this vicious cycle that is trying the best of the docs
here. . . and me.
I consider myself a pretty good problem solver. I like
murder mysteries and often solve the "mystery" of a movie before the
end. I like games like Words with Friends, because they make me think and I
love my medical apps that give me a case and I have to solve it (I've gotten
pretty good too LOL - thinking of charging $20 for advice at this point!).
But I've lived with a walking, breathing, strong headed medical mystery
now for over 6 years and I can't figure the answers out. That's a kick in
the gut. I can solve random crap but not the one that really counts.
Sergio can't talk. But he can communicate beautifully.
Sergio is smart, but he'll make you think otherwise if it means you'll
ask him to do less. He'll play smart if it benefits him to do so. Sergio
can read (not at grade level, but can read words), he can spell, he can count
he can problem solve and is incredibly resourceful in devising ways of getting
to his water sources. He is sly and creative and is his own favorite
comedian (he literally will sit in his bed and crack himself up with evil
little thoughts! LOL) He is an integral
part of our family. The nurses that care
for him in our home, love him like he was one of their own.
Two days after his little fever fest.
The nurses in the hospital argue over who
will have him to care for. Why do I say
all this. . . because he’s worth the fight.
He’s worth the time, energy and mental anguish to pull him through these
awful infections again and again. I
often look at Sergio and think; “Do the doctors see what I see, and do they
think we should fight as hard as we do?”
I never let my mind think the unthinkable, that maybe just maybe, this
disabled little boy isn't work the money or time. But, their actions speak louder than my
worries. They fight like hell to keep
him going as I fight like hell right along with them. The doctors have pained looks on their face
each time we have to talk about replacing a line, or what to do with this
severe infection or how do we keep this from happening. They just don’t know either.
So in the end, the mystery stays just that, a mystery. My little spit fire who loves his naked,
backless potato heads (preferably in water).
My naughty little man who sticks his tongue out at everyone now because
he knows it gets a rise out of virtually anyone that works with him. My mystery man who has mastered the best
primal growl you’ll ever hear from a human when he doesn't like the outcome of
a plan he had devised. And as everyone knows,
a mystery is just waiting to be solved and so I will. . . hopefully it will be