by Troy Foster
Unfortunately,
we have had the experience of being with the Henry through many hospital
stays. They are never easy – not the
build up and the desperate attempts to do everything we can to avoid having to
go. Not the handoff of the other three
kids, and reassurance to them that Henry will be fine. And not watching the poking and prodding, or
seeing the other sick kids that are there.
Or seeing the helpless looks on the parents’ faces as they walk back and
forth, sitting, waiting for what is to come next.
In
fact, we have been lucky enough to have a proactive approach in his care that
most are not afforded. We know about
this rare disease, we know how Henry reacts, and we know what won’t work (for
the most part). Because of its rarity,
oftentimes we know more about mitochondrial disease than many.
Though
it has never been pleasant – and far from it – it has always been emotionally
manageable. This time was different.
And
to be honest, I’m not sure why. It
started off the same. Henry has
pneumonia, doctor has prescribed antibiotic, we are religious about his
breathing treatments, liquids, and getting him rest. Last night, there were some complications
(not out of the norm) – so I talked to the doctor and we tried something
else. Worked fine until Henry woke up
vomiting in the middle of the night.
Again, not something that we haven’t faced before, but enough to know
that we need help.
When
I got to the Emergency Room, we were rushed ahead of everyone and Henry was
given a breathing treatment and some liquids.
Routine. Then, we were visited by
4 doctors, each with increasing tenure and expertise. When Henry’s fever spiked to 103, I had to
explain that Tylenol is contraindicated for mitochondrial patients and he
needed something different; they obliged.
Henry patiently answered their questions – through his labored breathing
– and we watched TV shows and I brushed his cheek with the back of my hand
until he drifted off. All standard.
Things
then went a little further south than they have before. Henry was in respiratory distress, his blood
pressure and heart rate skyrocketed, he needed oxygen to maintain saturation,
and his fever was unmanageable. And,
little Henry was unresponsive. Not for a
long time – but for long enough to make the experience different.
And
then the most horrific thought crossed my mind.
What is different is that reality reared its ugly head for the first
time on this journey. None of the other experiences
were standard at all. They just didn’t
hit me the same way this one has. For
me, with all of the other experiences, it seemed that several things would have
to go wrong before we faced losing Henry.
Today, many of them did – and quickly.
So
though the wind has been knocked out of me a bit (ironic metaphor, I know),
this just seems to emphasize how important enjoying every day with our loved
ones is - just like Henry was doing with his siblings and cousins just a few days ago (above). Always was, and always has
been. Today was just a big reminder for
me. Small piece of advice: just take my word for it – don’t wait on your
own reminder.
