On Tuesday, we went to see the cardiovascular surgery team at Hope for our first post-Fontan follow up. Jonah had bloodwork and a chest X-ray done before seeing the nurses to help determine our plan of care going forward.
His lab results looked really nice with all if his electrolytes in normal range. His kidney function was good and those values (BUN) only showed mild dehydration. His INR was just a touch on the high side so we have ever so slightly tweaked his Comadin. The rest of his medications were unchanged at this point.
The biggest accomplishment during this visit was discontinuing Jonah's oxygen during the day. That's it. One change at a time. We collectively have determined that taking things slowly with Jonah seems to have the best results. We've learned a lot about how his little body works along this bumpy ride. With that, taking Jonah off oxygen feels like a giant leap in his recovery. In no way do we want to push his heart and lungs at this point, so we wait on pins and needles during this precarious time as his vital organs adjust to his new blood flow. We are still putting the O2 on him at night but the freedom of having our boy back untethered from all of the leads and cables and tubes has been so refreshing.
Tomorrow we see Jonah's cardiologist who will take the wheel from here on out. We aren't sure if we'll have an ECHO or EKG, we're just hoping we can get Jonah in the front door without a complete meltdown. Seems doubtful, but he's full of surprises;-) We will keep you posted and Thank You again for hanging in there with us!!!