December 26, 2018
Julia started the day off with quite a bit of vomiting. It looks like they still haven't found a formula that sits well with her. She seems to do OK until her nausea meds start to wear off, so they're looking into adjusting some timing. She's also fighting constipation again. Her poor GI system can't catch a break. Other than that, vitals are good and everything is stable.
They did not test out her own breathing today, due to how she handled physical therapy. So that will be a conversation again in a few days.
She had her first physical therapy session today. Outside of major medical events, I try to only post sweet pictures of her. But the pictures Reed sent were so... real, that I wanted to share them even though they are kind of sad to look at. You can see that she was beyond miserable. She was probably scared of all the people, most likely in pain, agitated that she can't use her body, confused because she doesn't understand what's happening... she (soundlessly) cried pretty much the whole time.
They worked with her for about 30 minutes but she refused to participate, so it was mostly the nurses and therapists moving her limbs and helping her to balance. Once she was propped up she did get a loooong hug from daddy and that calmed her heart rate down. When the session was over, she was so exhausted she instantly fell asleep. She was out cold the rest of the day.
The PT dislodged a LOT of mucus. Holy cow. Even the nurse was a bit disgusted. There is a tremendous amount of snot in her little body! This is all the gunk she couldn't cough up after the breathing tube / pneumonia that caused her to get a trach in the first place. Since they can't deep suction her, they can't take care of it like they normally would. So there was a lot of coughing, gagging, and puking up of all this mucus that has been pooling in her lungs and throat for over a month. It's totally gross, but it needs to come out so this is a great step.
They said to expect the snot fountain for the next several days. Once that's under control, they will look at testing her breathing while off the vent. They will be talking with ENT about possibly lifting the no deep suction restriction. Apparently it is to prevent her from gagging on the tube (because they don't want her to do that motion) but she is gagging a ton now that PT is dislodging everything. They believe it might be safer, and much more comfortable, if they get the OK to just handle it. There should be an answer on that tomorrow.
Tough day for the little one. Finally started the road to rebuilding her strength though, so it's all good. No smiles, of course, but lots of good daddy hand squeezes. Tomorrow will be her first back-to-back PT session so hopefully she'll respond a bit better.