Update: Henry's Heart

First, let me apologize for how long it has been since the last blog post. I am not sure I’ve ever gone so long without a post!

We’ve been pretty busy with things like swimming class, storytime at the library and enjoying unseasonably warm weather! We also took a family trip to Boston! (Well, Eddie had a conference to attend and we tagged along with him!)

Besides all of the fun, we’ve also been dealing with some challenging news. We found out from Henry’s cardiologist that his condition has progressed (and not in a positive way). His 24-hour monitor revealed that he is experiencing some breaks/pauses between beats both during his waking hours and during sleep. She said that this was a sign that his condition was worsening. She brought his monitor results to an electrophysiologist for review as well. He concurred that this change in his condition was not a good sign and said that it meant that Henry will need to get a pacemaker.

Getting that news was not easy. I was pretty upset the morning that we found out but was glad that Eddie could leave work to spend the morning with us. We also had the Boston trip right after to help to distract me while we waited for our appointment with the electrophysiologist. (I’m sorry if you are reading this and are surprised we hadn’t shared this then. We didn’t want to tell too many people until we had some more information about everything that was going on.)

We had our appointment with the doctor this morning at the New York-Presbyterian Morgan Stanley Children’s Hospital, which is part of Columbia University Medical Center in New York City. It was a nice and easy drive to get there, which is great. Henry was a patient little patient while they hooked him up for a quick EKG reading and then took his blood pressure (one cuff on each arm and leg!). The doctor/electrophysiologist was very nice and explained everything in a way that made it easy to understand.

Basically what is happening with Henry’s heart is that the nerve that communicates between the two halves of the heart isn’t doing its job all of the time, which means the bottom half of the heart (which pumps the blood out to the body) sometimes forgets to beat, sometimes for a few second at a time. This is, obviously, not good. Because there is no way to repair this nerve, the pacemaker will help the heart when it doesn’t get the signal to beat.

The pacemaker is about the size of a half-dollar (but a little thicker) and has two wires that connect t the heart (one on each half). It will sense when the top part of Henry’s heart sends the electrical signal for the bottom half to beat and if the bottom half is being lazy, it will give it a little jolt to remind it to beat. (I always thought the pacemaker was just an ongoing thing but it only activates when it is needed.) The device will be implanted in his belly for now and in 5-7 years he’ll get a new one that will be placed up by his shoulder.

The neat thing is that technology allows the pacemaker to give out information about how often Henry’s heart is having the signal issue, what the batter y life is like, etc. There is an external device that we can hold over where the pacemaker is and it will gather the information. We will be able to call the doctor’s office, hold the device to the phone and it will transmit the data. This means we only will have to go in twice a year to have things checked out in person.

Short term effects of having the pacemaker put in: Henry will have a few days in the hospital, won’t be able to do swim class or baths for a few weeks, and he can’t play dodgeball. Seriously, the doctor said this…as a joke. :-)

For the long term: In 5-7 years he’ll get a new pacemaker. He won’t be able to play contact sports. (I’m not so upset about no football but no baseball catcher is a little sad…he can’t be like daddy.) He’ll need to get new pacemakers every so often but knowing how quickly medical technology moves by the time he’s an adult they’ll probably have some robot pill that will do everything.

I’ve got to say that today’s appointment was a lot easier than the original phone call we got saying that he’d need a pacemaker. I feel better having information. (I had been on a self-imposed Google and WebMD ban so that I wouldn’t get freaked out reading about everything that probably didn’t even apply to Henry.) The staff members at the hospital were great and I really felt at ease about everything.
We don’t have the exact day for the surgery yet but it will probably be sometime in early May.

Thank you to all of you who have shared your concern and kind words of support. We feel lucky to have such great friends and family in our lives.