At the risk of sounding like a broken record.
Yes, David extubated himself, again. Yes, they had to re-intubate, again.
This time they put the breathing tube down his nose instead of his mouth AND the Surgeon came and sutured the tube to his cheek. I think we can be a bit more confident that it’ll stay in place. That’s what I’m hoping for, anyway.
I need to be forthright here. David is in a tough place.
A. Very. Tough. Place.
A place I didn’t expect to be in, a week and a half ago. A week and a half ago when he was out of bed and smiling at the Occupational Therapist. A place I don’t want to have to visit ever again.
The doctors are perplexed at the progression of the GVHD. Perplexed doctors are never a good thing. Especially when the doctors tending to him are sought out for their knowledge. Families from all over the country come here for the expertise of these doctors.
David is in a tough place, indeed.
It took 4 hours today, to change the dressings that cover him from head to toe. 4 hours with a doctor, an RT and 8 nurses. There is discussion that maybe an OR suite would be a more appropriate place for the daily re-dressing of the babe. We’ll see what tomorrow brings.
Right now one of the Fellows is visiting us, trying his damnedest to insert an arterial line into David’s foot. An arterial line measures his blood pressure on a constant basis. They are unable to take cuff pressures because of his skin break-down. He had an arterial line placed in his wrist when they intubated him on Friday, but it’s no longer good (i.e. he’s losing the circulation in his hand) and it needs to come out. NOW.
Between him and his Fellow predecessor, it took almost 6 hours to get the new line placed. 6 long hours.
Every day is like running a marathon, not just for David and I, but for the doctors and nurses that are caring for him.
I feel so useless most days, because there really is nothing I can do. I can’t even do once simple things, like changing his diaper. I try to pitch in and help, though: grabbing supplies, opening packages, cleaning up around the room. Whatever small things I can do to be useful.
Diaper changes have become the stuff of nightmares. An hours’ worth of time, at least 3 nurses, and an extra dose of sedative, just for good measure.
During this evening’s spectacular poop blow-out, the Nurse Who Rubbed Me the Wrong Way asked if they had thought about using a fecal containment device.
Isn’t that the definition of a diaper?
Some Nurses do not value my opinion as much as others.