From Julian's COTA journal.
Julian was taken off his ventilator last night around 6 pm and is now on O2 support breathing on his own.
Today he's been mainly drifting between sleep and pain as the docs try to wean him off of his pain meds. Too much pain medication drops the blood pressure, and one of their goals at this point is to raise his b.p. in order to keep the new kidney fully profused and steadily producing urine. Julian still has some mucus in his upper airways, and has to cough in order to clear it. Coughing causes the abdomen to contract, and this, as you may imagine, is pretty painful. We just upped his pain meds, so hopefully he can sleep.
Cheryl's sister Crystal flew in from Portland, OR this morning to spend some time with her. Cheryl is in the same kind of pain Julian is in - coughing, abdominal pain, the whole thing. They're having a good visit. Crystal flies out tomorrow morning.
**Stacy here, Dave is at the Ronald McDonald House gathering some items in order to stay with Julian through the night here in the 3rd Floor West unit. They transferred us from the PICU around 8 pm, and the last three hours have been spent attempting to micromanage Julian's significant pain without regressing to previous levels of management. But we also want him to have some rest, so it's a fine line between too much sedation and keeping him reasonably comfortable. It's very difficult trying to explain to a child exactly why he has to go through this pain. There really aren't the words to make him understand those concepts quite yet. What to say? Mainly we have been trying to comfort him, telling him we are here, we are not going anywhere, and that we are sorry his is hurting. None of that seems to matter, though, when his whole body is convulsing with pain and those little earnest confused innocent eyes are pleading with us for some kind of physical relief from the pain. Then I start crying and it makes him even more scared. It's just hard. There is no easy way around it, it's just plain hard.**
Julian is still in pain, coming it and out of sleep. He needs his rest, so I think we're going to try a respiratory therapy that involves vibrating the chest to loosen secretions, and suction to evacuate them. Doesn't sound like fun, and will probably result in some additional pain temporarily, but should result in a good night sleep with clear breathing.