With the removal of V’s pacemaker during the revision of the revision surgery, our options for an eight pound infant that needed a pacemaker began to narrow significantly and become infinitely more complex. One of the three options we were given came with the “theoretically possible” caveat for a baby this small. One was reattempting the same thing we have been trying to do that obviously isn’t working. The other was to leave the baby alone and let her show us what she’s got.
Forty eight hours ago they turned V’s external pacemaker down to 50 bpm so that they could see what her heart would do on its own. Needless to say, Dad and I have been devoted fans of the Pulse Oxemitry Channel. The programming has been blessedly less than dramatic. So far, she hasn’t used the pacemaker yet. It looks like this might be our plan. She is less than enthusiastic about eating. We are still trying to sort out if that is because of the lower heart rate or because she has had two surgeries in less than week. They unhooked the pacemaker this morning (deep breath and stomach flip) and are keeping it bedside in the ICU. If all continues to go well we will be moving to a regular floor tomorrow with the pacemaker tucked away in a drawer but available if needed. If that continues to go well, they will remove the pacemaker leads and we will be going home completely unplugged.
We are stressed but actually OK with this plan. We are actually big supporters of this plan. Sometimes the best option really is to do nothing and you have to be open to that. Hoping things continue to go well, we are formulating how we will handle things when we get home in order to maintain our sanity and make sure V stays safe and sound. This plan, of course involves a home brew pulse oxygen meter out of parts lying around our house. Yes, I said parts lying around the house. Our house has a more unique junk drawer than most.
She will still need the pacemaker eventually. Her heart rate is not high enough to sustain her indefinitely – especially as she grows, crawls, runs, and starts doing normal kid stuff. But this plan might buy her the time she needs to grow big enough that the new pacemaker won’t be as likely to cause these one in a million complications. The chances of her doing well with a low heart rate for a period of time are not “theoretically possible”, they are possible. Our doctors have other cases of children going as long as two years with no pacing with heart rates similar to V’s. Not saying that will be her outcome. Just saying it isn’t unheard of. If the past few weeks have taught us anything, it is not to count the chickens before they hatch. But we are doing our best to be optimistic.
If all the members of Team Turtleheart could ready their best Go V! Go!, it would be much appreciated. V is showing us what she’s got. Let’s cheer her on.