Cedar’s Note: This post was written by my mother, and she is talking about my baby sister. I’ve been sick all weekend, and maybe that’s why I cried when Mom sent this to me. Or maybe it’s that this is the first time I’ve ever seen Mom talking about it all in one place. I’m grateful we may finally be getting answers – watching my sister wither away the last couple of years has been gut-wrenching.
Last night, laying on my bed in the dark and listening to my youngest daughter moaning in pain because she has to have a catheter in, and isn’t used to it yet, I started making a mental list of all the things I’ve had to ‘look up’ since she was born. Actually, I ought to go back even further than her birth – when I was little, my mother taught me that if I didn’t know a word, or didn’t know how to spell a word, I was to look it up in her big fat dictionary. If I had questions about something, she told me to look it up in the encyclopedia. So I have a learned reflex – if something is new to me, or I just need more information, I look it up. The internet has made this very easy, which is both good and bad.
We didn’t have the internet yet when Juniper was born almost forty years ago (her birthday is in three days). When she was hospitalized at six months old for failure to thrive – she had only gained about two and a half pounds over her birthweight – I went to the reference section in the public library. I went back there when she was labeled DD, or developmental disorder/developmentally delayed, a few months later.
Reverse tongue-thrust explained why every bite of food had to be pushed back into her mouth several times before she managed to swallow it. There wasn’t much information on that one at the library, but it finally explained the failure-to-thrive — she hadn’t been able to nurse effectively.
And then her special ed. kindergarten teacher called me up one day, a few weeks before Juniper’s sixth birthday, and said, “I think Juniper should be tested for autism.” Hard as the previous diagnoses had been, that one had me in shock. All I ‘knew’ about autism back then was that it was incurable, and some 95% of people with autism would eventually need to be institutionalized. (We’ve avoided that fate so far, but it was a near thing about a year ago.). The research on that has been ongoing ever since.
It was nine years before another new thing cropped up, and sent me back to the reference section: when she was about fifteen, I noticed that some of her skin was losing pigment. Vitiligo, an auto-immune disease, entered our vocabulary, and we learned to be careful about sun exposure.
Another three years passed, and my mother was diagnosed with celiac disease. She and one of my sisters suggested that I might have it, based on symptoms I was having. Off to the library again – and realized that Juniper had had almost classic symptoms of celiac disease from a few months old until she was almost six (children with celiac may stop having obvious symptoms for a while, but the condition does not go away). Now we were having to learn a whole new diet along with the medical information!
She was about twenty-seven or so when she had a routine doctor visit, and the doctor focused in on the raw spots on both of her cheekbones, something that had happened once in a while since she was in her mid-teens. “I think she has lupus,” he said, and ordered some tests. Oh, joy! Another reason to keep her out of the sun! More medications. More doctor visits. Rounds of prednisone when she had a lupus flare (almost always brought on by too much time in the sun). Lots and lots more looking things up, on the computer now.
All this time, there were odd little things that happened once in a while, like sores on the tops of her feet. The rheumatologist said, “No, that’s not related to the lupus,” and didn’t look any further. For years, she often woke up in the night screaming and crying. The gluten-free diet helped somewhat, but she still seemed to have stomach pain. Every so often, she would refuse to eat, and lose thirty pounds or so in a period of weeks. The latest episode of weight loss amounted to more like seventy pounds, as she dropped briefly down under a hundred pounds. Not dreadfully underweight for a small-boned female only 5’2” tall, but it sure didn’t leave her any cushion (yes, I see the pun there!). She was miserable, but lab tests didn’t show anything obviously wrong. She had also had an alarming number of episodes of peeing on the floor, which got her a scolding each time, but she just looked blank in response. The doctor treated for for an uti, even though her lab tests were clear, and a few months later put her back on anti-depressants. That helped, but very often she would still have a whole day where she walked around hunched over and in pain.
I wondered, and researched. Put us back on the auto-immune protocol diet, which helped, but not enough. Researched some more. Noticed that she was having episodes of bloating which correlated with the pain. Gas? Constipation? She’s been chronically constipated ever since the diarrhea of her early years cleared up. Or was she developing Crohn’s? Her dad has that now. More research. No conclusions.
A few days ago, Monday evening right after supper, she was sitting by me in the office. I was on the computer while she watched a video. She made a sound; I looked over to see her pale, sweaty, shaking, and unresponsive. When she didn’t come out of it immediately, I bundled her out to the truck and we drove to our tiny-town hospital. The ER nurses took her right in; she had various tests, including a CT scan, which gave me something new to look up: acute urinary retention and distended bladder. The nurse said her full bladder was the size of a basketball. Once she got rid of all she could in the bathroom, she was catheterized and they got another two cups – the amount a normal bladder holds. They sent us home with instructions make sure she peed every three hours during the day, and to bring her back if necessary. It didn’t sink in right away that we’d turned another corner into uncharted territory – this isn’t something that just goes away on it’s own. There really aren’t even any good medical treatments for the condition.
She felt really good on Tuesday, better than I’d seen her in several years, and briefly I thought maybe it was all good. But Wednesday wasn’t so great, and I almost took her back to the ER. She finally managed to get rid of the problem, sparing us that trip, but then we went to the appointment with the urologist on Thursday. The ER nurse had given me a disk with Juniper’s CT scan images to hand-carry to the urologist. We actually saw his PA (which was fine with me – all we’ve had experience with have been very good, and they usually take more time with the patient), and the first thing she said when she walked in was, “Did you know that Juniper has spina bifida occulta?” Total shock. I knew what spina bifida was, and I knew what occulta meant, but I had no clue that she had it. But it showed up on the CT scan, and they had spotted it. A little research showed that a lot of people have it, but most never have any symptoms and never know they have it.
In Juniper’s case, apparently the spina bifida is causing her bladder not to get the proper signals. Sometimes she goes without realizing it (the peeing on the floor), and sometimes her bladder won’t let go when it needs to, thus overfilling to a painful extent. The spina bifida may also be causing those sores on her feet, and who knows what else. She will see a neurologist, hopefully soon (great timing, coronavirus, NOT!), and I’m sure there will be more research to do. More things to look up. More tests for my poor, patient daughter.
Did I mention that I am TIRED of having new things to look up?
She couldn’t pee at all yesterday, so I finally took her back to the ER for another catheterization. This time it stayed in, and we are learning to deal with it at home. After all the pain she was having last night, I was more than a little worried, but she was feeling good when she woke up this morning, and has been having a good day. We are getting a routine down as far as dealing with her bag. But this isn’t likely to be a permanent solution. The PA at the urology office had mentioned putting a drain tube through her abdominal wall, and the nurse at the ER yesterday recommended that. She thought it would be a lot better than the catheter. Given the current situation, it may be months before we can have that done, because they aren’t doing any ‘elective’ procedures in the OR at the regional hospital for the duration. But that will be one more thing to do research on, in order to take care of it properly and recognize signs of problems in an almost non-verbal patient. We’ve had to make changes in what she wears, first to keep her from getting too much sun exposure, and now to make it easier to access that bag strapped to her leg. Thankfully, she doesn’t mind wearing dresses! I think I’ll make a few more skirts and dresses for her, though. I don’t know yet what will work best when she has the abdominal drain – better look that up!
I am very, very thankful for good medical care (and for her medical insurance), but I really hope that there won’t be any more new things to look up for a while.
(Header image is a family picture from four years ago. Juniper is the central figure in a light top. She was ill even then, and not happy with having her photo taken! Mom is seated in blue, with her hand on Juniper’s elbow)