Christopher ended up having his follow-up appointment at CHEO last Friday instead of yesterday, because he had another one of his pale episodes on Thursday. I called the cardiologist and he asked us to come in sooner. The echo done on Friday showed basically no change. The occlusion from the patch is still there, his heart function is still slightly affected, but neither is worse (or better, for that matter.)
He is certainly growing! He gained almost a pound in the week between his 2-month well-baby visit and his cardiology appointment! He's up to 14 pounds, 6 ounces now. No wonder he's growing out of all of his clothes.
They sent him home from his appointment on Friday with a Holter monitor on. He had stickies on his chest leading to a little cell phone-sized pack which we carted around with him for 24 hours. It recorded his heart rhythm for the entire period. He didn't have any pale spells while it was on, but did have one a few hours after it was taken off. The data that was collected was entirely normal, but unfortunately we don't know for sure what's happening during the pale spells.
Lots of smart people in Toronto and Ottawa put their heads together today and reviewed Christopher's case. His cardiologist called tonight to let us know the conclusion of the discussion. The news is pretty good. They don't feel that it's necessary to intervene at this point to fix the occlusion. For now, the plan is to repeat his echo once a month to see how his heart is looking. If it starts to show signs of worsening strain, then they will likely intervene, which would mean another surgery. If the function stays stable for the next 3 to 6 months or improves, they'll start spacing out the time between the tests.
The cardiologist says he really doesn't know what's causing the pale spells and neither does anyone else. He says if they keep happening frequently, we could consider another Holter (for a longer period of time) but for now, we'll just wait and see.
Overall, it's pretty good news. We're thrilled that he doesn't need surgery. That said, it's more uncertainty and waiting, which is tough. I am feeling a bit overwhelmed lately by worry and uncertainty, so the thought of waiting an entire month before someone can confirm that things are okay is a bit scary. A wise friend suggested to me recently that we should start taking Christopher to see his general pediatrician more often so that someone else can worry about all the little things and I can just be his mom, instead of worrying about the medical stuff and being "Dr. Mom" as well. I think it's a great idea, and I am going to book an appointment for sometime in the next week or two. And then he'll have his next echo (the fifteenth of his young life!) in mid-September. In the meantime, we'll carry on with life!
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