My mother is still in the hospital.
I haven’t written much here because a commenter pointed out that I’d been revealing a great deal of medical info about my mom (not so much here but on Twitter/Facebook) to which my mom hadn’t consented. Because it’s someone that reads here regularly and their comment was meant kindly, I took it as intended. I made the decision at that point to go back and trash a lot of the tweets/FB posts that I’d thrown up out of the frustration and confusion I’ve been feeling about my mom and what was happening to her as she got sicker and sicker this last week.
Today, at last, when I visited with her she was fully in her right mind so we were able to talk at great length about what’s been happening with her and since some of the issues we’ve turned up with all the extensive tests are odd and rare, she fully agreed that I should share them in case someone else presents similarly.
Her case is really one of zebras AND horses.
So, here’s the deal.
Initially she was admitted because of the fall. Obviously. She’d banged up her head really badly and required sutures on philtrum (yes, I had to look that up, and it’s the space between your upper lip and your nose) and the tip of her nose. But within about 24 hours of being admitted – while we were looking primarily at neurologic issues – she suddenly started having low SATS (low oxygen blood levels) and they had to supplement her with oxygen.
Here’s where the challenges came in. While some people get spacey and sleepy with low oxygen, my mother seems to instead tap into a sort of primal anger and fear instead which has led to a series of problems. It’s near instaneous, too: without the oxygen her SATS fall into the low 80%s within a minute (verses 98% with oxygen), and then it suddenly becomes a battle to get her to accept the oxygen again. The nurses and doctors and I have all hit this wall repeatedly in the last week. When I left her hospital room on Friday her parting words were, “FUCK YOU” and when I said I loved her she said, “I doubt that.” She becomes a different person.
Yesterday I was in touch with her doctors and nurses but I took a day off; my visits had been agitating her rather than cheering her, so it seemed best. Charlie visited and her friend Paula visited and we spoke on the phone several times instead. I think the break did us some good.
Today our visit was lovely.
So, here’s what we’ve learned. It’s multisystem stuff, but basically it’s a whole lot of small things have added up to a big issue .
• First, she’s hypothyroid. This could explain a few things, particularly her tiredness and thin hair.
• Second, she’s anemic. Again, explains the tiredness.
• Third – and this is still in the theory stage, but it’s getting more likely each day – the particular type of pneumonia she had last year is called BOOP (bronchiolitis obliterans organizing pneumonia) is a vicious type of pneumonia that not only involves an infection of the bronchial sacs (like more traditional pneumonia), but also involves inflammation of the lung tissue outside the sacs. Because of this my mother was on steroids (prednisone) for twenty months after the hospitalization last year – until about three weeks ago. Yep, they finally, after months of weaning, stepped her down completely from the steroids. It’s likely that her lungs flared up pretty much right away, and the fall was incidental (although the hypoxia caused by the swelling may have contributed, we’re not sure).
• Fourth, thanks to the above, she’s got an issue with exhaling; basically because of the long pneumonia she was trained to not exhale too hard because exhaling leads to coughing. This causes her to have too much CO2 in her bloodstream which then causes her to have muscle tone issues, including a sudden muscle collapse that can lead to – you guessed it – falls.
• Fifth – this is the weird one – she’s got something called homocysteinemia. I’m still wrapping my mind around it, but basically she’s got a buildup of homocysteine in her blood because she’s not getting enough of a group of B vitamins (Folate, B6 and B12). This explains her confusion and memory issues, and almost completely. Really. The doctor that tested her for this had a patient who presented so severely with this condition that he was catheritized and admitted to an Alzheimer’s ward. With treatment, his mind returned to itself in just a few days. I would love for this to be the root cause of so much of her issues, because it’s such an easy and direct fix (also, we’re going to get Charlie’s mom tested as well, just in case, since she is in an Alzheimer’s ward as well).
Random side note: in my research of homocysteinemia I found an article showing a relationship between that condition and a mutation of the MTHFR gene, something that I know I have as a result of massive testing I underwent after losing the boys (and was a contributing factor to their loss). I only tested for one of the likely two mutations, so I was able to be successful in my pregnancy with Tori because of massively high doses of folic acid during the pregnancy. It’s fairly likely that my mother has that gene mutation as well. But again, this is based on a completely non-doctor and non-scientific assumption of, well, me; when I brought it up with her doctor he wasn’t sure of a connection (but I plan to share the article I found with him).
Whew, that’s a lot, isn’t it?
So, we’re treating all this stuff at once. Today when I visited she was clear as a bell (although she had a very rough night and early morning, resulting in my getting several calls overnight). But we were able to talk at length about the medical stuff; hopefully this trend with continue so that she keeps the oxygen on and doesn’t fight so hard and rests instead.
Next step is to get her into a rehab facility again so that she can start rebuild her muscle tone and re-learn the right way to breathe. While she’s there, we’re going to do some work on her room downstairs (so much for Christma – oops, self pity creeping in, sorry, but good GOD I hate money so thoroughly and wish we had big piles of it to fix everything) so that it’s safe for her. Mostly by eliminating the little step up to her bathroom; she’s fine on a regular flight of stairs (ironically), but that irregularly sized step is a challenge.
One thing I wanted to mention, by the way, is that my mom isn’t a doddering old lady; she’s 64. Not even retirement age. The first six months she lived with us she wasn’t enfeebled at all; she was going to the gym with me, teaching a big class load, taking care of her own needs like groceries and bills and gas and stuff. This sort of weakness and helplessness has crept in over the last six months, starting with a fall she had at the gym. It was easy to dismiss it as a kind of depression (something my mom has struggled with before) and not an actual medical condition; in fact, her neurologist did just that when she saw him a month ago when she was having issues with confusion. We pushed her into getting treatment, and we saw some improvement and it looked like things were going to get back to a semblance of normal, before her two falls last weekend.
I’m hoping that now, finally, we might be on that track.
So, in all of this, how am I? I’m tired. But I’m coping.
I left the hospital today as it became clear that my mom was tiring and needed to rest. I turned on her television, because that’s definitely a good way to make her sleep (she finds it dull, but it distracts her). As we were selecting a channel with landed on a station that was clearly Christian, playing a praise song (from which I got the title of this post) that we’ve sung in church a few times. She got goosebumps and tears in her eyes, and I feel like she was deeply comforted. When I left, she was drifting off to sleep with the music.
Let’s all pray for a good and restful night for her. Please, please, please.