gotta get me home
to my baby's side
Ride, ride, ride
Hitchin' a Ride
-Vanity Fare, Hitchin' a Ride
Sorry for the lack of updates lately - it's been a busy couple of days. After a small step sideways with some breathing trouble, Jay is now making big leaps forward again. Yesterday afternoon he switched back from the CPAP to the high-flow nasal cannula and seems to be tolerating it very well. He's still got junky lungs and an icky-sounding cough, and his chest x-rays still look pretty yucky. He's still got a fever, so the infectious disease folks are more and more certain that he's got pneumonia rather than an infection from one of his central lines. While pneumonia certainly isn't good, it's far better than a central line infection - it's likely treatable with oral antibiotics rather than the six week IV infusion that was promised. (Is that one complication that we have sidestepped?!) Still no official word, but things are looking better than we thought initially.
Jay is also getting more and more food. He has had a variety of pureed fruits, oatmeal, and even some hummus for lunch. Between the food smoothies and the formula through his feeding tube, they have turned off his IV nutrition. He is also off all heart support drugs--still on amioderone for the arrhythmia (again it's going to be a while for that one). Almost all of his meds have been switched to oral meds, and they are hoping to take out his PICC line tomorrow.
But for the song lyric connection, Jay got to leave our humble CICU room for a wagon ride today. In the same way that our first outings when we brought him home as a newborn required loads of stuff, this journey was quite a production. His much-adored AJ hauled the portable oxygen tank, the nurse pulled the IV pole with his 6 remaining pumps (down from a high of more than 15!), his daddy pulled the wagon, while Granna and Popper took pics like the paparazzi. Quite a scene they made! But they took 2 laps around the whole CICU, and even headed out to the bridge where they could look out the windows. Jay seemed quite happy to see something other than those same 4 walls.
Jay is quickly regaining his construction abilities. This morning he sat up on his own for 20-30 minutes playing with his tools. Sitting up and balancing is a big step on its own. He is also slowly regaining his hand-eye coordination and arm strength.
Talking is still a lot of work for him, but he is improving each day. He will mouth words and give a faint whisper, but he won't really vocalize anything. Two weeks with a breathing tube will make the ol' throat a bit sore. Vocal cord paralysis is a potential problem, and one he experienced with his first heart surgery as an infant. It usually resolves on its own, but we hope this is just a sore throat not something more serious.
We're guessing that he's still a week or more from the step-down unit, but he's been making such great (and FAST!) progress over the past 2 days, he could surprise us again. It's been a great couple of days.