Cleveland Clinic Update 4-23

We’re going home tomorrow!

We’re sorting out all of the details. The hospital is helping us arrange an ambulance ride home. Unfortunately, it may be out of pocket. Insurance doesn’t cover transportation home from so far away, if there is a closer hospital we could have chosen that offers the same service. I have a call to make later to discuss this, and the transport company seems confident insurance can be convinced to cover it.

Karen is having a challenging time with the medications. We think we can get the queasy meds and pain meds going ok, but the medication they are giving her to reduce the ammonia in her blood is making her very sick. This is a damned if you do, and damned if you don’t kind of thing. When the ammonia builds up she loses her acuity, like early in our visit. But it forces the ammonia out through the digestive tract rather efficiently.

Karen decided upon home health, instead of hospice right now. The services are a bit different, but a big one is that home health will come out to work with her to improve her strength and mobility, but hospice concentrates on providing comfort only. This puts more of the care for her comfort onto our shoulders, but we have help with that. I’ve been caring for all her needs, even here at the hospital, so the only difference is the mobility aids they have here that I don’t have at home. Amazon is taking care of some of that, and the hospital is taking care of the rest.

I may follow up again tonight, but caring for Karen’s needs take priority, and I may need to take every opportunity to nap. We haven’t been getting a lot of sleep, and it’s a long drive home.

10:30PM

Karen is resting. One of the meds that helps with the ammonia level in her blood causes stomach discomfort (as if she didn’t have enough of that going on), so they allowed her to reduce that to help her travel home comfortably. She already had trouble keeping a couple doses down, so her ammonia is pretty high. That can lead to some problems with her cognitive reasoning, so we’ll try to climb that back up at home to get her feeling right.

I doubt I’ll post tomorrow. We’ll have a flurry of doctors in seeing us all morning, have a long drive home, and then I’ll be getting everything in order. Caring for her at home will be a bit different than it was here in the hospital, so Karen and I will have to re-learn a bit of it. I’ll have support through this. I’m sorry, but home visits aren’t appropriate at this time. Thank you for understanding.

Notes and letters are wonderful, and I’ll read them to her. If you have something small you’d like to send her, I’ll make sure she sees it, but please don’t send stinky stuff. Sorry if it’s too late notice. We made some posts about it shortly after founding her blog, but I’m sure we have new folks following along.

We’ve learned over the last couple years that cancer plays havoc with the sense of smell (and taste). What smells good today will make her throw up tomorrow. She can smell things across the room that I can’t smell at all. Hand soaps, candles, and even dishwasher detergent have gotten change-ups in our house. Recently coffee started smelling bad to her, much to my chagrin. As far as plants go, we still have a few, but got rid of a lot of others over the last year. Flowers are pretty much hit and miss. I’ll do my best to get them put out of the reach of the cats (as if that’s possible), and out of smell range, if any show up.

Unfortunately, I won’t be checking her email, but will read the blog comments to her. Don’t worry if you post a comment and it doesn’t appear right away. Comments require approval the first time somebody makes one, but future comments from that person will get approved automatically. Please don’t post personal information since comments are seen by the public.

I’ll update Wednesday night if everything is under control. Sooner if possible. Thank you for all the love and encouragement!