It Was Different This Time

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.