3:17pm update:
Job is back on hi-flow. 8 liters per minute, which is a lot of support.
I'm crushed.
The ICU is the best place for him. He's ok. But this is going to get worse before it gets better and we're going to be here a lot longer.
Why is every step of this journey extra hard for Job? Complications are constant.
1:15pm update:
SLP came by and I gave the very long history of Job's vocal cord paralysis and diaphragm plication and oxygen requirements and thickened feeds and crying leading to breath holding leading to coughing leading to vomiting... and then she assessed him and will start coming by every day to work on feeding and work on his expressive language while we're here inpatient.
I'm so excited to have intervention in this area because it's been a lingering concern that has been pushed to the side this summer especially while we focused on his failing heart.
11:21am update:
Job is desatting occasionally to the low 90s. He's still coughing. He's off insulin and no longer getting his blood checked every hour (just once a day!!). He's down on milrinone.
He's much much more himself today, though very low energy. He's not sleeping well because he can't get comfortable with his lines and because of his cough and because the steroids he's on for his transplant (TX) make it hard to sleep too. It's so so fun to see him interact with us again, though they're "just" little smiles. He whispered/mouthed "Dad" and "Mom" and has signed "please" a few times, but it probably hurts him to talk much.
Whhhyyyy is he coughing, though? He swabbed positive for rhino but the thought is that that might be a remnant of the cold he had the week before transplant. He's definitely not managing his secretions well. SLP will come by to assess later today.
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