Ryan’s Fontan – Post op day 8

Today marks our 9th day in the hospital and just over a week post-op from Ryan’s Fontan procedure.

It was a quiet, but busy day.

We worked on keeping Ryan awake more and getting him up and out of the bed. This meant several walking trips to the loo, a short walk to the nurse’s station, 2 sessions with PT, and at least 3 wheelchair rides, with 2 of them being to an outdoor patio. It was so nice to feel the breeze through our hair. Ryan hasn’t been out of the hospital for nine days, and other than a quick step outside to get my pizza from the delivery guy on Weds night, I haven’t been out since Sunday morning when I kissed the girls and Henry goodbye.

We also tried to play a few games.

Ryan quickly tired of Memory – even though it was his idea in the first place – I think because we were watching The Lion King at the same time and he chose the movie over the cards. My feelings weren’t hurt.

He also spent some time tonight doing this….

The boy is ready to be unplugged and let loose. Unfortunately, we still have some work cut out for us in the way of draining fluid. There was an uptick today on both sides as he was up and about, and his morning x-ray showed another small pocket we are praying will be absorbed by the body or migrate to the tubes. The surgical team says it’s in an almost impossible spot to access without a major ordeal. It would not be an in-room procedure like the other two.

It’s a little past midnight (so technically Friday – yikes, I’m officially a day late now) and he’s settling in for the night. With all our activity he was up much more today and I’m hoping he’ll sleep a good chunk tonight. A mother can hope, right?

Please continue to pray for the fluid collecting in his chest – that it would drain or be reabsorbed. The right side continues to be pretty bloody, so pray for resolution especially on that side.

Praise that Ryan’s kidneys are back where they need to be and he was able to wean off an IV drug called milrinone. It’s a strong drug that IVs don’t like so we’ve been running it through his Fontan line. That line has proven to be unstable so it’d be nice not to have to rely on it so much. And yay for one less thing connected to his little body.

Prayer/Praise – Ryan was able to wean his oxygen down to 2. We hope to move to 1 tonight. Please pray he will tolerate the wean and be able to come off sometime in the next 24 hours totally. He would love to get that little nasal cannula off his face. And trips to the bathroom would be made easier without another portable tank to drag with us!

Pray that Ryan’s body will continue to heal without any further complications…

… that his Fontan pressures would stay in the safe range and he wouldn’t develop any long-term bad side effects from the surgery.

Some more humor to close out the evening:

+  A few times over the last couple days I’ve been singing to Ryan to try and soothe him or help him fall to sleep. With all the seriousness he has in his little body he’s said, “Please stop.”  Guess my singing just ain’t cuttin’ it.

+ While I was helping him sit up to cough he said, “I think I’m ill.”