Not what you want to hear

It's been a tough week for little Dexter. On Tuesday, it seemed like the myoclonic jerks were getting more frequent, and when I asked for Aaron's second opinion, he didn't disagree like I hoped he would. It's hard to admit that he's getting worse. And then he started to get even sleepier and worse at sucking and swallowing. That night he woke me up several times with this awful gagging, retching, choking noise. Was he just unable to swallow his own secretions? (I know, it's getting a bit gross, I warned you this wasn't what you wanted to hear, and you're the one still reading it.) Gratefully he was still breathing--I'm coming to appreciate what King Benjamin says in Mosiah about each breath being a gift from the Lord.

When the occupational therapist came for her first visit this week to work with us on Dexter's oral feeding, those myoclonic jerks were completely disrupting his ability to stay latched on, let alone suck-swallow-breathe. And then he got really sleepy after just a few minutes of being awake which didn't help him either. She wondered aloud if the myoclonus was interrupting his sleep so much that he could never actually get rested, making him completely exhausted all the time. And the physical therapist, who came on Thursday, saw how difficult he is to calm and how he doesn't appreciate the changes in position that physical therapy generally entails. She affirmed that Dexter is a tricky one and said she'd try to come back next week with more ideas.

Wednesday, Dexter got his first dose of the medicine, which is a type of Vitamin B, that the neurologist thinks may help reduce the myoclonic jerks. Thursday the neurologist called and talked to us about what she's doing to try to get a diagnosis. He's going to get a spinal tap as soon as possible to run more tests, and she wants him to meet with a metabolic specialist. I shared our concerns about the increased frequency of myoclonus, so at least she's aware of that.

Then Thursday evening I noticed something new and disturbing, and once again when I asked Aaron to confirm what I thought, he unfortunately agreed with me: these new episodes look seizure-like. He gets completely rigid; every muscle goes tense, including face muscles; his eyes pop open looking very distressed; he purses his lips and makes spit bubbles while his hands do this rhythmic movement. It's scary to me and rough on him--he makes this little whimper afterwards and kind of sputters and coughs. Oh, Dexter! I haven't timed how long they last, but it seems like a long time to me. In reality it's probably 30 seconds or so. Friday I called to talk to the neurologist about it, and the nurse I reported to said she'd pass it along and call back if anything needed to be done right away. We haven't heard anything.

Today, Dexter's myoclonic jerks are very infrequent. Maybe the medication is kicking in. And he doesn't cry and arch his back when I change his diaper or mess with his G-tube. Or when I yank tape off of his cheeks. Or when I gave him his first real bath since his surgery (the steritape finally all fell off yesterday, it was about time!). Being more tolerant of being messed with might sound like a good thing, but not when he's as limp as a rag doll and completely unresponsive to such aggravating stimuli. It was so scary. And he looks so pale today. The neurologist said this medicine wasn't supposed to have side effects since it's just a vitamin. But Dexter's his own little unpredicatable man--maybe this is his reaction to it? Or is it just the course he was already on since we'd noticed his symptoms getting worse this week? Who knows. I wondered if I should take him to the emergency room, but what answers would they be able to provide? I wish it wasn't the weekend so I could bring him in to the neurology office. We're praying that we'll know what we need to do for him. We put our trust in the Lord and hope that he'll get more responsive soon.