JAM,
He finished tx last thursday and chemo was stopped 3 weeks ago due to the PEG. (They think the
Erbitux was keeping his infection from healing properly). What happened is:
1. The PEG was not put in well (thank you intern)and was still too leaky a week later.
2. My mother was twisting it (like an earring) the second week because she thought the nurse had showed her to when she brought him back in
3. Then he was hospitalized on a notoriously badly run floor for his thrush infection he contracted a staff infection in the tube site which stretched about a foot and a half across his belly. His wound site opened much wider than the tube, causing gastric juice to fly out of it and burn his belly skin badly. -also a faulty valve (you know those two-way ones they put meds though) had the cap fly off several times and spilt all of him. -Though it took forever for me to get the nurses on the floor to agree to getting rid of it.
-At this point he went to intensive care
Then he went to a really good surgical floor and lived on IV's for a week for food and meds and infection goes away, but his skin is burnt badly-
4.They then think the
Erbitux chemo was keeping his problematic tube from healing.
5. Meanwhile, the hole was enlarging but they don't make larger tubes, so they made a "junkyard tube" out of a catheter and a gerber baby bottle nipple while they waited for a special order tube that inflates to put in him.
6. Surgeon removed "junkyard Tube" and replaced it with new tube -bedside with me standing there...very much like the civil war.
7. Surgeon comes in every morning to check tube and pack vaseline gauze around the hole, and says "It looks good, the hole is getting smaller." For the last 2 weeks.
8. He finishes his radiation (which he continued for all but his one worst week) and the hospital lets him go with the understanding that his tube is bad, but getting better..Deal with it.
This has been an 12 week ordeal for the tube, 8 weeks to get through tx, and the last month of it, hospitalized because of the damned tube. Mom or I have been with him every single day.
He will be fine and then just erupt with bright yellow curdled stuff, or black bloody looking stuff. It can spill to his socks. He gets super agitated and freaked and rips his clothes off immediately. This happened 3 times yesterday.
Anyway, I brought him home thurs and we made an appt to see a gastroenterologist for tues. Here in the area and nothing to do with a CCC-because, frankly no one took full responsibility for this over there and he needs fresh eyes on his problem. I also think the surgeon was covering her ass by continually trying to fix it.
I can't begin to tell you the nightmare of his hospitalization.
As far as the treatment goes, he has finished and we have to wait a month or so-I don't have the date.