Maybe we're Really home from the Hospital?

Hi everyone. I'm not sure where I left off with updates. Dan stayed at Ocean medical center on our second trip until July 1. We had been trying since the previous Thursday to get him transferred to Jefferson University Hospital in Philadelphia. Why we went back to Ocean we don't understand, except it was 4 AM and Dan was suffering a lot. But the same analysis paralysis and lack of a single physician in real control that was getting Dan no better (but managing to trim 33 pounds off his 126 pound frame) also prevented any consensus for a transfer. But it did cause them to run all the tests we would allow a second and third time while they attempted to make sure they were covered legally. Some tests we wanted to discuss with the one physician we trusted before we would allow them, as well as inserting a PICC line to feed him. We told them we wanted to talk to him on Sunday, but they didn't even inform us he was away on vacation until the following Friday! I can't begin to express to you our frustration and fear for those 11 days. We were stuck in a most horrible limbo.
By Tuesday July 1, one of the doctors said maybe they would release him(?!) as they felt he was getting better. there was still no output from his stoma after a week, and he could not tolerate food, but since his blood chemistry looked OK I guess they figured he was better. We knew he was not but played along so we could get him out of there finally. We took him home about 5:30 PM, hoping a miracle would occur, but it already had--he was out of that hospital! We got about 4 hours sleep, packed and headed to Philly. After he was admitted, they pulled over 3 liters of greeen fluid from his belly through his feeding tube (plus the liter we drained at home) and had him in a room by late afternoon. The NEXT DAY they had located the blockage and showed us! We knew we were in a much better hospital by now. The other one with over a dozen doctors getting paid never found it.
Dan stayed there until July 10. His stoma finally started working and he was tolerating some food. They also had been feeding him with a PICC line. Brenda has spent every night since May 30 by his side except 3 when he was sedated after surgery and 3 other nights when I was able to convince her to go home. I stayed at my sister's and worked nights from her basement while they were in Jefferson because it was so much closer.
By the time we got home it appeared to stop working again, but we've watched what they do at the hospital, and we have restarted it twice since we got home. So we really don't know yet if we'll have to go back or not, but we are slowly learning that he needs twice as much water as we were told and some other major do's and dont's, but we are mostly on out own trying to figure him out. We found an online forum which has helped a lot, but have not been able to find anyone who can help with ileostomy management when you are fed through a tube. We are trying to find some way to get him fattened up since he's so skinny now, but are discovering foods he can't tolerate and looking for supplements he can. So we're still touch and go.
Dan is in good spirits and doing things as normally as he can with us playing around so much giving him so much water and trying different supplements. He's tiring easier of course, but wants to get out doing things. But he's still really skinny, and we want him a little better padded before we get out riding Arnold too much.

Monday July 14, 2008 - 09:20pm EDT