My Heart Breaks; Henry's Heart is Just Fine!

Henry and I just got back from his visit to the cardiologist.  It was a quick visit, he had a couple of tests, and is now at home while I do a little work.  

The good news:  His heart remains to be structurally sound.  He has a murmur and low blood pressure, both not biggies.  And he might have an arrhythmia – which wouldn't be a big deal either because the doctor reassured me that they can treat most with medications.  So, he is wearing a little heart monitor for a day or so.

With all of that good news, it's hard to believe that it was one of the most sobering and difficult appointments for me.  Maybe it's just me or maybe I was in a fog of denial because of the sleep apnea and now that I sleep . . . .  Anyway, it was the talk of the future that was difficult.  The cardiologist (and geneticist) put together a plan for Henry, what to look for, what to expect, and when to schedule his next appointment.  They said that we should anticipate that he will have cardiac issues given the severity of his deficiency and since the heart uses so much energy.  That he will continue to need more sleep, may become tired more easily, and may need to rest more regularly.  At some point, they will likely continuously monitor his heart and he might need oxygen (given that his lungs have shown issues and his oxygenation levels fall already).

But, not now.  That's for later.  And something we should be aware of.  For now, the cardiologist (Dr. Jeffries) said it best "this is about quality for Henry – packing as much good stuff in as we can – without going overboard."  So when I asked the question that Henry was dying for me to (could he play soccer), Henry looked up anxiously.  Jeffries, good with kids (or Henry at least), said "well, of course he can.  But Dad, he probably should be goalie or play on one end of the field because that's the most important position."  Henry smiled and looked to make sure that I heard the doctor.  And when he was again entranced in the TV in the room, Jeffries told me that exertion will wipe him out for longer and longer periods.  He's not concerned with his not being able to play for now – just that it will take a toll on him for the days that follow.  We already see that with visits and other fun stuff – but, it is so worth it.

And, Jeffries wants to see Luke again – another echo – probably every 6 months for him.  Older, asymptomatic mito patients get a little more attention, he told me.  They'll develop a plan for him too.

I'm all about planning and setting expectations, but today I just wasn't expecting it.  In looking back, all of the other "things" that Henry has have just snuck up on us.  His G-tube (now G-J tube); we know he'll have that forever.  His steroids/breathing treatments (doc said forever on that).  The medicines, his glasses, regular tests, treatments, and procedures.  Infusions of different medicines, etc.  It's just kind of grown on us.  Never thought I'd be pulling syringes out of my backpack or medical tape out of my pocket – instead of pacifiers or other kid crap.  Guess I would have preferred that the things in the future (heart monitors, cardiac meds, etc.) just grow on us too.  Looking ahead was too difficult today – maybe because I looked farther than Jeffries and team articulated – a place I refuse to embrace.  Never will.

To end with something fun, attached is a pic of Henry eating some black beans at Chipotle.  We love this place.  It's Henry's favorite, as black beans are 1 of 3 foods that he can eat - and Chipotle's are the best.  They are sponsoring a fund raiser for Henry's Hope next week; so, if we didn't love them already (we did), we do even more.  (For more information about the fundraiser, visit www.henryshope.org.)