In school, I didn't like A minuses and I don't really like them today. But I am choosing to focus on the good!
The good news is that Luke's echo looked beautiful as usual, great function and no narrowing where the angioplasty was done in the aortic arch. His blood pressures on arm and leg were perfect and his EKG was normal.
The minus was his sats. Normally, he runs in the mid-80's, 84-86% but yesterday he was holding steady at 80-82%. We've been prepared that eventually Luke's oxygen saturations will trend down, but you also are never ready for that. This very well could be from the hit Luke's lungs took from his nasty chest cold a few weeks ago. Or it could be that he's growing and his heart is having a harder time perfusing oxygen to his fingertips. We do notice it takes a little longer for his fingers to pink back up after he's been exercising or out in the cold. Maybe he was cold yesterday? Maybe it was the machine? A lot of factors can contribute to a person's sat level, and thankfully Dr. Kim did not jump at the chance to see cause for concern. Especially after the echo.
He does want us to come back in a couple of months, though, to recheck his sats. If they are low 80's, or back up to mid-80's, we will just keep plugging along. If this truly is a trend downward, and his sat's are high 70's, then it will be time to schedule a catheterization and possibly starting talking Fontan. Blegh.
I have to remind myself constantly, though, that this decision to move forward with the Fontan is not about me. It's about giving Luke the best chance possible to live the fullest life possible. If it's time to help him out by taking more workload off his heart, then I want that for him. And we will get through open-heart surgery and a hospital stay with the strength of our faith and the support of our "team".
It feels good to have a specific plan in place. I also appreciate Dr. Kim's level-headedness about Luke's care. He didn't rush or push or jump. His approach is just to watch and let Luke let us know if this is a concern or not.
Luke had put on a couple of pounds since his last appointment (he hit 40! yay!) and grown an inch since September. For that reason, we can go up to 2.5 ml's on his Enalapril, which allows us to switch to pill form and thus fatten our wallets :) We'll see how pill-swallowing goes. Should be interesting.
We talked a bit about Luke's left diaphragm plication and how that may impact the Fontan and also about the new Fontan "Y" graft that is showing some good outcomes.
Luke did a stellar job and had his new I-Spy books to look at to help keep him occupied. I just love this boy so much. And apparently, even when he sasses me or stomps away in anger, he loves us too:
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| I found this on the back of one of his school worksheets. |
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