Open the Eyes of My Heart

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.

Good times.

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.

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Comments

  1. says

    Thank you for sharing her story as it may help someone else. It also helps caregivers watch for symptoms to help the recognize the early symptoms so that they can get them treatment sooner. My mom passed away a lil over two years ago and I shared her story in a six part series.

  2. Sarah says

    Happy to hear some better news from you. I’m sure you are sharing valuable information here. Tell your mother that readers say “get well soon.”

  3. says

    I feel like no one can get a break this week. I am so sorry you have so much to deal with and I appreciate you writing about it. My mom has been through a lot this year at age 70 (lung cancer was the worst) and I dread the years to come. Sending hugs your way.

  4. says

    Thinking of your family during this situation. For myself, the wealth of information becomes more comforting than the steely word of “unknown”. I hope these new answers allow a plan to be formulated which will give you years of love with your Mom.

  5. says

    I am happy you finally have some explanation and that she had a good day. I hope she continues to improve with treatment.

  6. says

    wow, that is an intriguing compilation of medical stuff. Reminds me of when my mother was in a coma – there are different “grades” of coma, and she of course was in the angry, violent reactive category. Oh, also probably the thyroid/homocysteine imbalances are dancing off each other. So, glad they did such a thorough workup on her, and hopefully now she’s headed in the right direction.
    go nap!

  7. Yatima says

    Oh Cecily, I am so sorry. We’re dealing with some similar issues – including the B deficiency – with my Dad; but he is in his late seventies. You’re right, at 64 she should still be pacing you at the gym. Hope the new plans restore as much of her faculties as possible. And you’ve always struck me as a woman whose heart has wide-open eyes.

  8. says

    I take Deplin for my folate/B-12 levels because I have a mutation that depletes my stores and my body doesn’t regulate it how it is supposed to be used. My attention span gets bad, memory, and I get REALLLY tired and depressed. Once I went on Deplin I felt like a whole new person.

    You are in my thoughts, dear. I hope things start looking better and better for you.

  9. juliag says

    Floradix! I am a new woman on it. And I’m wondering if the last six, ten, twenty(?) years of my life would’ve been very different if I’d been taking it. It’s B-12 and iron mostly. I take Floravital specifically. And for the first time in my life I am not tired all the time. And. This is with a three month old and two older boys?!? Since taking it I don’t ever have that “can’t get off of the couch” feeling. I seriously want everyone to try it and make their lives better. I’m thinking a lot of us need more b-12 and iron. Perhaps I should go door to door. The price and taste seem to scare people off, but I like the taste just fine and the price is SO worth it if it means I never need a nap and feel like life is doable.

  10. says

    I’m sorry this is hard for you, but maybe now that you know more about what’s going on, she’ll make a quick recovery. Thank you for sharing this.

  11. says

    Sending good vibes for continued healing. Good on you for digging to find the zebras. Being an advocate is tough work. Make sure to take care of you, too. XO

  12. says

    I’m so glad you have a group of doctor’s that is fighting for you and your mom. And I’m glad you have some answers.

    And I love that song. :)

  13. says

    Wow. So many threads of medical stuff. You are so awesome for advocating for her daily (hourly!) I am thankful that the doctors continued to test. I am thankful that you are getting your Mom back. XO

  14. says

    thanks for sharing. I have been following you on Twitter and I have been praying for your mom and her medical team. It’s nice to know that answers are being found. :)

  15. says

    Thank you so much posting this, especially the Vitamin B info. I’m going to have to check that out immediately. Please thank your mom for being willing to share this. Get some rest.

  16. margalit (@margalit) says

    I hope your mom continues to improve. If you find a good rehab for her, she’s going to improve just by having therapists that work with her and encourage her. I spent ;most of this summer in rehab (two different ones) after my falls, and I just want to say that one with a lot of activities really is a lot like adult daycare, fun and full of learning. I really liked the second rehab I was in because they kept me interested and entertained. It isn’t all about the therapies… people need things to look forward to, even if it’s just ice ream sundaes on Friday.

    I also want to say that serious faslls take a LONG time to recover from. I had my first fall last June and I’m still nervous and fearful of walking on anything but flat dry ground. The second fall (in rehab) left me with my entire right side broken and the recovery is still ongoing. I can’t speak for your mom, but my level of fear and hesitancy over falling again, plus the clear evidence that I’m in deteriorating health has throwm me for a loop. My whole life has changed because of those falls, and even though I’m following my doctor’s instructions to the letter, I’m too afraid to even take a shower unless there is somebody in the house, just in case.

    So I just want you to know from someone a few years younger than your mom, someone with similar medical issues to cut your mom a break. Make your visits short, bring magazines you can share, is she isn’t on some weird food restrictions bring her little treats. She will appreciate your visits more if you keep it light. Be funny, be sweet and loving and get the hell out of there if you feel that you’re about to lose it.

  17. says

    I love your honesty and I love your blog. Praying for your mom and for you. Speedy recovery – for her body and your heart and mind. xo Kristen

  18. Alexicographer says

    Oof. It sounds like they’ve turned up a lot that’s treatable, and I hope it will respond to treatment. I’m hypothyroid (very mildly), and getting (just) that diagnosed and treated changed my life, in a good way.

    I know it’s not the key issue here and that you’ve written about many aspects of having your mom living with you, Charlie, and Tori elsewhere, but I’d be interested to hear about how you remodeled your home in preparation for her and what you got right and what you’d do differently if you had it to do over. I mean, obviously the half step in to the shower, but just more in general and thinking not just about specific structures but about the process.

    Thinking of all of you and hoping you all have a restful night.

  19. Lisa says

    Count me as one person who may be impacted by this post. I haven’t commented in awhile, but in the past two years I’ve joined the ranks of those who suffer from IF and one of my diagnoses is MTHFR. I’m taking the 4 mg of folic acid daily, and I had planned to stop after I (theoretically) have a baby. After reading this, I definitely won’t be doing that! Also, my grandmother has been suffering from dementia for several years but has not been diagnosed with Alzheimer’s. I wonder if this could be her problem too?

    I hope your mom gets back to 100% very soon! I will be thinking of her and your family.

  20. Marija says

    Hang in there – I’m amazed by your strength and clarity in all of this, all the while battling your own demons and making the best of life for your daughter. And only “crack” in this is “self-pity” for wishing more average, calmer Christmas.

    Take care. You are doing lots of good, all around. Wishing you calm, boring Christmas.

  21. CJ says

    I’m so sorry to hear your Mom having all these problems! That’s quite a clusterf*ck of issues.

    Eggs and meat, plus chelated iron (saw the Floradix recommendation — that’s good too), hopefully will help.

    Take time out for yourself, however you can, even just minutes at a time. You are working so hard for your Mom’s health and well being.