And so it goes with our dear Jonah:) We have said this before in the past...he goes from 0 to 60, he has no grey area or middle ground. His recovery after the Fontan has not been any different. Whether it is medications, not eating, no naps or a new drawn out bedtime routine, oxygen saturations, dehydration, temperament...Jonah's day-to-day seems like a play book of opposites.
Tuesday was kind of a train wreck. It started out with Jonah completely refusing anything to eat for breakfast which made sense because he quickly started to work on a poop that was not going to come easily. I let go of the idea of food to let Jonah work on a few things but we needed to get going on checking his INR for the week. It was the first trip to our local hospital's outpatient lab and I had a feeling it wasn't going to be quick. We had to register first, but overall, the whole process didn't take as long as I expected. This lab is able to check his INR by doing a finger stick similar to a diabetic checking their blood sugar. This did not make any difference for Jonah-traumatized...although I think this part will get easier. Any waaaay, his INR was 3.3. Too high for the target range of 1.8-2.2.
By now it was about 12:00. With nothing in his belly and all his energy spent freaking out in the lab, Jonah passed out in his car seat immediately. I just kept driving with the hopes he'd stay asleep long enough it could qualify as a nap and I ended up at my parents house. This is where we ended up on that teeter-totter-gone-bad again. Jonah started throwing up. He still hadn't eaten, he still hadn't pooped and now he couldn't even keep water down. Within a matter of hours, his eyes hollowed out, dark-ER circles appeared under those eyes, and he was so lethargic he couldn't hold his head up. He had been drinking well throughout the day until now but his fluid restriction/medication balance was clearly unbalanced!
Seriously, they keep telling us this is all typical of a post op Fontan but it in no way, shape, or form makes this any easier to accept or to handle. Our nerves are shot. Our patience lost. Our energy on "E".
We talked with our cardiologist and decided to cut Jonah's diuretics in half and are sticking to 0.5mg of Coumadin until the next INR check next Tuesday. This change in medication can be a good thing. A step in the right direction, but we are still nervous of a lurking pleural effusion. I guess we'll never know how he's really adjusting until we try. And the fact that he was so dry again tells Jonah's medical team it's time to cut back, an indicator his body may be acclimating to the new circulation.
Only time will tell. Hoping we can hang on...