Mom Update 5/28

Mom’s moved to a room on a different floor, so she’s now out of the ICU.

Also, Rick posted a comment yesterday that clarifies what she’s up to:

I was over there yesterday and a couple of times today, and Deirdre’s been over there, too. Cheryl started physical therapy this afternoon. Predictably and as I warned her, it was tough sledding for her. I didn’t get a full account of what they had her do, but it seems to have included her at least standing up for a while if not walking a bit.

One of the nurses was by, as was a social worker, and both separately talked to me about Cheryl’s condition and possible next steps. The nurse seemed to suggest that it’ll probably be a couple of more weeks before Cheryl can be released to the outside skilled nursing facility (SNF). The social worker detailed four SNFs in the surrounding cities we’re likely to be able to choose among, so I got the names of all of those, so we can visit them. She also speculated that Cheryl may be cleared to be transferred to the regular hospital ward and out of the ICU within a few days. The nurse suggested that Cheryl might need to do some substantial amount of physical therapy before she is cleared for the needed hernia surgery, but this sounded a lot like speculation on his part, and really, as with much else, it’s up to the attending physician. Anyway, I do agree it’s sadly unlikely that we’re getting Cheryl home for quite a few more weeks, but the good news is that she is still getting steadily better.

In other good if belated news, Cheryl is now using a CPAP ( = continuous positive airway pressure) machine, borrowed from the hospital, when she sleeps, so that she isn’t continually woken out of REM sleep by brief cessations of breathing (as happens with a small percentage of people). I am told this extra-fancy CPAP machine is technicaly a BiPAP ( = bilevel positive airway pressure) machine, in which both breathing-in and breathing-out pressures are regulated. What I hear is that Cheryl had tried and disliked the regular machine she had at home, and had given up on it and given it to Deirdre after Deirdre had a sleep study concluded that she needed one. Apparently, Cheryl is now sold on (at least) the BiPAP, if not on CPAPs generally, as she now is reporting restful sleep that she’d been unable to get before. So, obviously, she’s really needed one all along.

About CPAPs

About 25 years ago, I dated a doctor for a while. One night we spent together, he said, “did you know you have sleep apnea?”

I didn’t even know what that was, and treatment options were limited back then (even though the CPAP concept was invented in 1980), so I just filed it away and eventually looked it up.

Finally, I’d gotten enough cash to get a sleep study, and the center had a couple months of backlog. My appointment was for the end of November.

My first husband died on November 15th, and the last I saw of him was on a ventilator. The sleep study? I just couldn’t. While a CPAP isn’t a ventilator, it was just too close, and I couldn’t handle it emotionally.

A couple of years later, my dad wound up getting a CPAP and would wax poetic about how much he liked it, but the mask over the mouth still freaked me out. Then I went to Clarion, and could not stay awake. The mental exhaustion on top of everything else was too much. At that time, I wished I’d gotten a CPAP, but obviously I couldn’t in the middle of Clarion.

Then my mom got a CPAP. Tried it. Hated it.

A few months later, our friend Ross mentioned his CPAP, saying he’d been most successful with a nasal interface (aka nasal pillows). That turns out to not hit the same emotional button for me as the mouth interface. I decided to try my mom’s CPAP out.

The first night? Slime city. I’d suffered from chronic sinus problems all my life, and it cleaned everything out. Even though I got very little actual sleep, I sure felt better the next day. The next two nights I also struggled with adapting, but I slept better both nights than I had in years.

Went to my doc, told the tale (including both parents having been diagnosed), and I was pushed to the front of Kaiser’s queue for an at-home sleep study. The resp doc was on vacation the day after I saw him, but he called me from vacation to let me know that I should go in to get a CPAP as soon as humanly possible.

I’ve been on a CPAP ever since, and I’m on my third machine. I no longer have chronic sinus problems. Though I never had serious acid reflux problems, those are also rarer and less severe than they were before the CPAP. (Though that is not universal; some have worse problems on CPAP.)

There have been exactly two downsides for me. First, I’m more prone to nosebleeds than I was before, though consistent use of Ayr Nasal Gel prevents that problem. Second, I have to plan when and where I sleep more. I can’t just catch a nap and expect to be well rested.

Which is a very long way of saying: I’m glad my mom is finally happy using a CPAP, though technically, they’ve put her on a BiPAP (which has different pressures for inhale/exhale). It took me a long time to get there, but I’m glad my mom’s finally on the same page.

Oh, and a weird thing? When we got tested initially, my father, mother, and I all had the exact same air pressure settings.