by Nothing stays uneventful for long, right?
Night one at CHOP was uneventful. Night two, AJ started to have some crazy blood pressures. They stopped one of his meds that was new and he seemed to recover fine, but had everyone on high alert.
Today he started bradying more than usual — essentially dropping his heartrate low (normally he’s in the 120s and when he Brady’s he will drop to 80s). He only does it when he’s upset, and it’s something he’s always done when he gags, but it’s now lower and more frequent than before. He recovers quickly and doesn’t seem bothered by the heartrate changes, but it’s still scary.
The results of his echo came back too and indicated that there’s a blockage in his aortic arch of some degree. We need to do a cath to get a better idea as to what’s going on and we tentatively talked about Friday or early next week – which would likely be Tuesday because of the holiday.
Meanwhile, some of his numbers related to his kidney function started to act up, and his blood pressures have drifted to be different in his arms and feet, all likely a culprit of this narrowed aortic arch. The team has stopped his diuretics to make sure it’s not an issue with dehydration, but odds are that its related to his kidneys not getting enough blood flow.
When they do the cath that he needs, they may be able to balloon it out – but that would likely delay his Glenn repairs for 2-3 weeks while the tissue healed. Alternatively they may be able to do something about it during surgery – which he may not yet be ready for.
There are a lot of scenarios that could play out from all of this, but right now what we could use are some major prayers — prayers that his kidneys will pull through, prayers that we are able to figure out what’s going on for certain, prayers that the surgical and cardiology team here can come to the best solution for him and prayers that mom and dad don’t lose their minds in the process.
Right now my goal is just to keep him happy and comfortable, since he’s having these Brady incidents when he’s not thrilled. Lots of cuddles, rocking, singing and of course – lots of prayers.
I’ll update when we know more, but please keep us in mind as we move forward with whatever comes next. Xx
