Tina said Debbie was up and down all night and neither of them got much rest.
I don't understand the finer points of the tweeking that is going on to get Deb's pain meds at the right level, but I know there's a great deal of back and forth. For example, she was taking the MSContin 3 times a day and using the Dilaudid as her "breakthrough" pain med and that was working pretty well. Then Saturday, when Tina was there they switched the pain meds to 4 times a day and that's when things started to go south. The next modification was to go back to 3 times a day put up the dosage. So far so good on that.
Debbie is sleeping a great deal, but to be honest, I think she may be flat exhausted. When she has a good day, it's as though she has to squeeze every last drop out of it and she ends up wearing herself out. She asked Ray how she could make her lungs stronger and he told her to get up and walk around. As much as she'd like that, she simply doesn't have the energy.
Also, I know she's getting cabin fever, so I emailed Carla, the social worker and ask if she could have a preliminary discussion with the Dr. about when Debbie might be able to go home. Much to my surprise, she said anytime. I'm very happy to report the wheels are in motion and we're hoping to take her "home" to DeAnn's house on Saturday. Debbie's excited but also a little apprehensive because she won't have a cadre of nurses around 24/7 but she will have all of us who have been and will continue to be around all the time. And hopefully, she'll be more relaxed at DeAnn's and will get up and move around, perhaps even go out on the deck. Worse case scenario is she can come back to the hospice if she decides the home care arrangement isn't working.
I can't say enough nice things about the hospice folks. They're ordering a bed, bed tray, oxygen (also portable oxygen) and a wheelchair for Debbie. They have been so encouraging and caring. Knowing they are there as a safety net has really allowed us to keep going and to be there for Debbie. When I got to the hospice today Debbie was sleeping so peacefully. She was reclined in a comfortable position and breathing quietly. She wasn't sitting up fighting the sleep and talking to herself. What a nice change, and she needs the rest. I'm also relieved to know the hospice will be transporting Debbie to my sister's as they said her comfort is the most important thing.
And while I'm handing out warm fuzzies to all the nice folks at the hospice, I have to mention how kind Ms. Andrews at Monroe County DFACS has been in helping me to try and get Debbie's paperwork through on Medicare. Suffice to say, I have homework.
On a sad note, Debbie's next door neighbor at the hospice, B Jay Womack, passed away this evening around 9 p.m. B Jay was only 35 and had non-small cell lung cancer which is very aggressive. When he arrived two weeks ago he walked in on his own power (albeit slowly) but his decline was very swift. He had dozens of friends by to see him on his last day. B Jay was an incredibly nice guy and that's really all I knew about him. I've learned a great deal in the last three hours. For those that are interested, B Jay is the cover story on this week's Creative Loafing here in Atlanta (an alternative newspaper /tabloid). He was a fixture on the Atlanta Music Scene, going by the name Bobby Ubangi. I wish I'd had the time to get to know him better...that's a loss for me. But my focus was on my sister and that's a plus. Godspeed, B Jay.
Next post: What do we do now?
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