I didn’t write much about August, and the last open heart surgery – frankly, some of it, I don’t even know how to go into.
It was both a “OMG, this is awesome!” with the successful surgery that quite quickly turned into an “OMG, this sucks.” when Jacob’s heartbeat did not regulate itself after the surgery and he had to be placed on an external pacemaker. When you start cutting into the heart, the electrical system that runs it apparently does not have a big breaker box that the surgeons can just kind of meander around and avoid. Each previous surgery, he left the operating room with pacemaker wires just in case, but never had to be hooked up to one. This time, he left with one.
Waiting for My Real Heartbeat to Begin
Our obscenely long ICU stay was due to the external pacemaker, as the box literally is just next to him and should he get up and trip and rip out the wires – well, that would be bad. He was not allowed to get up without an army of people going “Watch the wires!” as he moved from the bed to the chair and back again. We hovered over him for good measure, as well.
We waited. After heart surgery, the heart oftentimes goes back to the way it was after it gets over the shock of being cut on, and the doctors all hoped that would be the case here. The way they checked was that they would come in every morning at 6 AM on rounds, dial down the pacemaker, and see if his heart rhythm stayed steady or sunk like a stone.
Since we now have a permanent pacemaker, you can probably surmise how this went. Each and every day at 6am during rounds we would greet the day watching our child’s heart slow, the blood drain from his face, and his expression attempt to cover his horror at feeling his heart beat slow. Then, when they were convinced nothing had changed, his shock at the quick return back to the pacemaker’s induced rhythm.
It was some of the worst moments I’ve had with CHD, and CHD provides a plethora of soul-battering shock moments. Sitting there as a parent as you watch the doctors deliberately turn down your child’s heartbeat, watch how it affects him, and trying to smile and remain calm as if it is perfectly normal to watch someone turn off your child. It is a test of self-control.
The parental urge to rip their hands from that Pacemaker machine is overwhelming.
The Heart’s Electric System – awesomely reliable. Until it isn’t.
It was explained to us that the heart has it’s main electrical system, and 2 backup systems. The heart is very serious about keeping you alive – the heart is not dependent on the nervous system to pump or beat, but it is dependent upon its own specialized electrical system.
The SA Node is your main system, and is the “dominant pacemaker”, and usually fires at a rate of 60-100 times each minute. If that fails, you have the AV Junction as a back-up pacemaker, and its intrinsic firing rate is normally 40-60 each minute – slower than the SA node. Then there is a third backup system, the Purkinje network which initiates electrical impulses at a rate of 20-40 each minute – which may not produce enough cardiac output to sustain consciousness or even to sustain life.
When the doctors told us that the SA Node and the AV Junction were shot to hell and were unlikely to come back, we were stunned. Jacob had one electrical system working, and it beat so slow that it’s likely if he was taken off the Pacemaker he would simply pass out within seconds.
This was a hard bridge to cross.
After the surgery we were elated – the doctors were so impressed with the surgery that football and competitive sports were suddenly possible. Things we were unable to allow him to do for years suddenly became potentials. His heart came out of the surgery functioning better then it ever had. The future had grown bright for such a short time, and before we were even out of the hospital, it had thrown something at us again.
It was hard. That one week where I felt all luck and G-d himself were on our side was so short lived. It was like returning to that moment before CHD showed up, that time as a parent where you look down the road and you feel anything is possible.
“Dude. I’m Gonna be a Cyborg!”
Some people get pacemakers because they get a better quality of life after having it implanted. Some people get them because they are “pacemaker dependent” and cannot survive without it. My child is the latter.
It’s been an adjustment – we don’t know any Pacemaker dependent CHDers so this one’s new for us and we’re blazing the trail and adjusting on our own as best we can. Hopefully, we’ll find some eventually (hence the partial reason for this blog post).
More on the adjustment in another post.
