A drawling, quiet week until Thursday, during which there was not much to report.
Thursday, however, we began a series of very eventful days, with one thing leading to another, and another, and another, and another . . .
Thursday morning, James went for a walk. Physical therapists gave him the cutest little walker, looked like a little old man walking down the halls and out to see the fish tank in the family room. Cried the whole way there, the whole way back, and at every point in between, but he did it all on his own.Thursday, afternoon, Cardiology brought him in for a post-op cardiac catheterization. They wanted to check and make sure his chylothorax wasn't being exacerbated by a new Fontan connection that left too much pressure in his lungs. Kirsten and I weren't fans of this idea -- we knew high pressures were the most likely cause of the chyle leaking from his lymph system -- but the team presented a good argument for it, and we couldn't ignore the logic. It was very frustrating, as you can imagine, when they brought him out, confirmed his pressures were high, and then said there was nothing they could identify that would help: previous to the procedure, they mentioned ballooning, stenting, and coiling, but none of these options would have done anything, they said, to help. So, they performed a collage of minimally invasive procedures that will keep James knocked out for a few days, for what seemed/seems like nothing, reminding us what we all already know: James simply needs time for his body to adapt.
Friday, when he was finally awake after his restless night after the cath and long day-time nap, James suffered from another complication: atrial flutter. This is essentially one of his heart's atria running a sprint while the rest of his heart jogs to catch up, making all of his heart run fast, but his atria run super fast. While no one can say for sure that it was a direct result of the dyes or fluids or methods they used during the cath, because this does happen to healthy people without direct cause, this was one of the things they warned us could happen as a result of the cath, and required another procedure to get his heart rhythm's back into sync: cardioversion, or simply a nice little shock treatment.
Of course, James has a Fontan heart-lung system, with chylous effusions, so at this point almost everything that can happen to him puts him at substantially higher risk of clotting, and atrial flutter left to it's own defenses (most normal people would get back to normal rhythm without intervention) makes even more possible a clot in the heart. So, they did the cardioversion quick and fast Friday evening, shocking him back to normal rhythm, and putting him on digoxin to help maintain his normal heart rhythm.
And that gets us to Saturday.
Today, James was cranky, nauseous, irritable, and refused to sleep. After being woken every 30 minutes last night to check his heart, or give him meds, or take his blood pressure and temperature, or change his diaper, or give him another med, or do another EKG, James has decided he won't sleep. Beyond him becoming a vampire, he is now becoming an insomniac. He wouldn't stand, cuz the digoxin makes him dizzy and nauseous, and he wouldn't lie down, cuz the digoxin and the shock and the stickers and wires make him edgy, and he wouldn't sleep, cuz he's again wary of anyone in the room with him, including mommy and daddy.
But, he spent the morning watching videos, eating ice, playing ipad games, and generally wearing himself out with restlessness, so he finally went down for a nap -- eyes partly open just in case. And, tonight we got him to do some light standing, stomping, stretching, and a few unsteady, but purposeful, steps -- to get his ipad :)
No comments:
Post a Comment