We're home now but tired. Ready to relax.
Ainsley had a pretty good night despite the frequent waking from the nurse doing vitals and RT(Respiratory Therapist) checking CPAP every 2 hours. She woke and wanted to hold my hand. Although I pushed her bed up to the cot it wasn't easy to sleep that way for long. Since she needed physical reassurance I offered to climb into her hospital bed at 3:00am. The doctors start rounds in the very early am.
The resident General Surgeon thought she could come off NPO orders early but then it took some work to get that to happen. In the end she got to start clears at 10:00 instead of 12:00. She tolerated apple juice so she was then allowed to start solids about an hour later. It was really difficult on her being without food and water for 36 hours so it was quite a relief once she'd eaten.
But she still wasn't her happy self.
We had a visit from the clowns from Room Circus, by far the highlight of the stay.
The doctors' cart was complete ukulele, with a rubber chicken in addition to their "black bag".
They took the pulse-oximeter probe light from her finger and then tossed it back and forth even pulling it through their ears.
The racoon Jasmine popped bubbles.
Ainsley joined in helping pop them and then we saw the hint of a smile.
What she really wanted though was for them to remove the IV. There was some concern that perhaps she might have a complication from the stoma closure. The CPAP seemed to push some air into the tissues of her neck. By the afternoon it had improved so we were able to remove the IV which was a good thing. She'd been asking every few minutes for hours, and her hand had started to swell. (Likely from excess fluid and lack of movement, they said.)
We'd also been waiting to see the ENT about the appearance of the stoma closure. I hadn't been able to see it due to the dressing. It's still difficult to see due to the Steri-strips. It was a bit of a traumatic discovery given our history with prior disappointing surgeries, but I'm too exhausted to elaborate.
Although the trachea itself was stitched together very tight the outer layers, where the skin is, was left open in the center to allow fluid and air to escape. This style of closure may not leave the type of scar I'd envisioned. Kind of an innie bellybutton. Preoperatively when he said the incision would be across the neck, and that it would be loosely attached at the outer layer I imagined it still being held together in a straight line. We hope to be pleasantly surprised. She cannot soak either site for a week and no pool for 2 weeks. The Steristrips may not fall off for several weeks so we might not get a good look for awhile.
Ainsley summed it up best.
I am so glad to get outta that place! Having two surgeries at once is hard.
Having a kid who's been through 17 surgeries in less than 9 years is hard. It just is.
But no tubie holes?
Pictures to come in the future.