Wish, you are so funny! Actually, one of the the things I play with in the back of my mind is turning this house into an accessible B&B (there aren't any others that I know of on this lake).
So, since my last post we've done one ER run and were sent him, and a second run to another hospital where he was admitted for three days. Ileus again. This time gastro got involved and said that they believe his problem is an overgrowth of bacteria in the small intestine creating all the gas. His diabetes, the ALS, and milk based formula set him up for it, and they suspect repeated rounds of antibiotics will be the answer because it's just going to keep happening.
Between that and his blood sugar, I ordered two cases of Liquid Hope to try it out. If it resolves some of his issues, I'll launch the battle to get insurance or the VA to cover it. It is thick, so we mixed in 100ml of water and it runs just fine through his pump.
The last hospital run was scary. He filled with so much gas that we couldn't get anything in or out of his stomach--to include his medications. It took a day and a half to get him to the point that we could get meds in, and by then he was a wreck--questioning his decision to have the trach and wanting to know about turning it off. After a couple of days back on those chemical wonder drugs he's back to happy Matt.
Talk about being blessed, the nursing agency sent nurses to sit with him in the hospital!!! I was able to leave because I trust both of the nurses completely. It was very strange not being there with him, but at this point they actually kept a closer eye on things than I was able to. It was also very, very strange to come home to an empty house.
We took Matt for a haircut yesterday and then he wanted to go to Lowes to pick out new kitchen appliances.That is the most active he's been since the trach went in. I think it also helps that both daughters have called to discuss life altering decisions they are in the process of making (he can talk with the inline Passy-Muir valve). Pete's post really drove home how important it is for our PALS to realize that they do contribute to our lives, even if their bodies have betrayed them.
Oh, back to the hospital stay. I know Im jumping around. It's interesting to watch the varying reactions by the staff to having a private duty nurse show up. Most are grateful for the help. One had a bad attitude all day, and I finally had to chew her up a bit. That's always dangerous, because I'm never sure that once I start I won't take out all my pain and anger and frustration on that person, but I was able to restrict myself to her attitude. Happily, she came around when she saw us cleaning Matt up after a BM. I guess she realized that we weren't just there to give her instructions... By the time we left everyone was very friendly, which is the best outcome.
I've also added yet another item to the "go list". The portable Hoyer will now remain in the van. we simply could not get them to bring in the Hoyer to lift Matt for a BM. They didn't think their slings would work and their lifts only work with their paper slings. ARGH. He wouldn't go home without a BM and he can't have one on his back. In desperation we finally rolled him on his side. It worked, but his O2 dropped to the 70s in just s few moments. We rolled him right over on his back and sat him up and told him that the rest, if there was more, would wait until we got home. I actually had visions fo him exploding all over the room as we picked him up to transfer to the chair (oh, yeah, my nurse pointed out to their nurse that his butt was showing through the sling and told her to never let anyone tell her again that it couldn't be done). Well, we got home with no incidents.
Sue, you were right. I now drive him by myself, vent and all. I no longer care--I'll stop anywhere that I have to if he needs something. I just keep an eye on him through the mirror. The ambulance ride was way too rough on him!!
Becky
