Archive | 12:28 pm

This is (a) spinal tap

27 May

I don’t know about you, but to me the words “spinal tap” have a comical air about them, even though I’ve never actually seen the movie people associate the phrase with. However, there’s definitely not much comical about the honest-to-goodness medical procedure.

I asked the doctor why this kind of procedure didn’t require an anesthesiologist, since it’s similar to an epidural. He said that an epidural is much more difficult because the area the doctor has to hit is so much smaller. He told me I was welcome to stay with Jade if I wanted to, but I could also wait outside if that would make me more comfortable. I told him I’d be a lot more uncomfortable outside, and basically promised him I wouldn’t get hysterical.

Since the idea is to put a needle into the person’s spine, and Jade’s yet a bit young to listen to the instructions “don’t move a muscle”, they gave her a dose of Midazolam, a sedative, mixed with Tylenol, which was to take the edge of any discomfort from the needle once everything else had worn off. Midazolam is supposed to take 10 to 15 minutes to work, but when that window had passed, Jade was still wide awake. The doctor ordered another dose. Then another. And then yet another. I was getting agitated about the massive amounts of drugs she was getting, but Jade was just high as a kite, giggling about everything and not looking the least bit sleepy. The doctor said that by the time the last dose was administered, the first dose would have been wearing off because it’s metabolized quickly, but I was still upset about how much of the stuff she got.

Another doctor, an anesthesiologist, came in and they decided to administer an intravenous sedative instead, convenient since she already had the IV thingy (Drat it! What’s it called?) in her arm. She got another dose of Midazolam intravenously, and then a dose of Ketamine. Apparently, Ketamine gives people weird dreams, but Midazolam induces mild amnesia. There might be other reasons for the combination, but that’s what I gleaned from the conversation. Anyway, the important thing is that it worked pretty close to instantly.

They curled Jade up in fetal position to get the spine to open up and the anesthesiologist helped the doctor to mark the spot with a pen. He actually kind of coached the doctor through much of the procedure, which I must say did nothing to calm my nerves. I realize that they don’t get to do these things very often here, and they want to have more people proficient at it, but it didn’t give me any warm fuzzies to realize the doctor hadn’t done this very often before.

The doctor swabbed Jade’s back with tincture of iodine. It ran everywhere; we were even cleaning it out of the folds of her ear afterward. The needle he inserted into her spine was pretty ordinary looking, except it didn’t have a syringe attached, just a little plastic opening. Spinal “tap” really is an apt name for the procedure. I couldn’t help thinking, as he held the collection vials under the opening (and some dripped onto the bed as he was switching between tubes), that it really was like watching sugar water drip from a tapped maple or birch tree. Only a lot more emotional. They all commented on how beautifully clear the cerebrospinal fluid was, I guess the first good indicator that she doesn’t have meningitis.

It took about 45 minutes for the Midazolam/Ketamine to wear off, and Jade was pretty weak for a while afterward. By this time it was about 3 in the afternoon; she’d spent most of the day sleeping. I got the nurse to make me a list of all the drugs Jade had had that day, so I could keep track, and also so that if she ever needs to be sedated again, I can tell them to bugger off when they suggest an oral dose of Midazolam.

Once the procedure was over and everyone was cleaning up, the doctor looked at me and said approvingly, “You did well, Mum!” I chuckled, wondering if he’s ever actually had a panicking parent watching him do a lumbar puncture. But all I said was, “More importantly: you did well.” I’m not sure whether or not he appreciated that.

Seizure update

27 May

I’m at work today and it’s lunchtime. I would be at the hospital visiting with Jade and Michael, but I called first to see if they needed anything and it turns out Jade is napping right now. So instead of disturbing her sleep, I’m taking a few minutes to update you on her situation. Bear with me, it’s a bit long because I’m including lots of details.

First off, thanks so much for all the supportive comments, e-mails, and phone calls. It’s so heartwarming to know you’re all thinking of her! Kelly and Nita and dropped off a container of butternut squash soup (yum!) and Alpine Bakery bread (double yum!) last night, so I won’t have to stress out about supper when I get home later today. All your good wishes and prayers give me so much strength!

Monday morning, I arrived at the hospital at 8:45; I saw that Jade’s arm was bundled up in a bandage to keep an IV thingy (what’s that part that stays in your arm called?) in place. She was sleeping. I looked at Michael and said, “She had another one, didn’t she?” He nodded.

This one was the longest one yet, but the good part was that the doctor was right there when it started, so he actually observed the seizure. After she’d been in the seizure for about 5 minutes with no signs of recovery, they gave her a dose of Valium. Another 5 minutes passed and she was still convulsing, so they gave her another dose. A few minutes later, it was over. I wonder if the Valium did it, or if she would have finished then anyway.

They decided to do a CT scan. Michael was with her for it and he said when they strapped her to the board, they were going to restrain her arms, but he told them not to. She’s hated having her arms restrained since she was born; she would always struggle to get them out of a swaddle. They let her just relax on the board for a minute or two, and she fell asleep, and the scan went off without a hitch. Apparently, the radiologist was astonished that it had been so easy.

Jade woke up just before 10 a.m., just long enough to get a dose of Clobazam (the anti-seizure medication) mixed in a spoonful of ice cream, and then she fell asleep again.

Early in the afternoon, our wonderful nurse Janice told me that the doctor was coming in to talk to us about doing a lumbar puncture, also known as a spinal tap. Even though they thought it highly unlikely, the specialist in Vancouver recommended testing for meningitis; small children sometimes don’t get all the expected symptoms. I’ll write about the spinal tap procedure in a separate post, so as not to bog this one down with the details.

The hardest part about yesterday was coming to terms with the sheer volume of drugs Jade got pumped into her little system. A list:

  • Valium (5 mg total) during seizure
  • Clobazam 2.5 mg (anti-seizure medication — I think it ended up being 5 total by the end of day)
  • Midazolam 12 mg total by mouth (this was really distressing — details in the spinal tap post)
  • Tylenol (250 mg) to ease pain for spinal tap
  • Medazolam (2 mg) via IV to sedate for spinal tap
  • Ketamine (5 mg) via IV to sedate for spinal tap
  • Amoxicillin for ear infection

Talk about a pharmacopoeia.

I saw Jade this morning before coming in to work; she’d had a terrific night’s sleep (once she fell asleep, which was very late… not surprising given how much time she spent asleep during the day) and was in a great mood after having a hearty breakfast. Michael took advantage of my presence to have a shower. Jade showed me how happy she was by crawling around on the hospital bed; I was impressed at how she’s so quickly learned to be careful with her hand with the IV thingy (gotta ask the nurse about what it’s called!) — it’s not so comfortable when you try to crawl on it.

It looks like Jade will be in the hospital for at least one more night, and she’ll be staying on the anti-seizure meds for at least a week. After that, we foresee taking her off and watching to see how she does. Hypocritically, after having such a hard time watching her have all those drugs yesterday, I’m now worried about taking her off the anti-seizure meds.

As for the trip to Vancouver, it doesn’t look like it will be happening anytime really soon. Dr. Avery explained that because “seizure disorders” are pretty common, it’s difficult to get a neurologist riled up about it. Also, having the work-up by the neurologist is unlikely to change the course of treatment (which is to give anti-seizure medication). So it’s not really considered urgent.

I guess we can say that Jade officially has epilepsy. Apparently, whenever someone has a two or more seizures not associated with fever, it’s called epilepsy. That’s about as scientific as the definition for colic.

The good new is, seizures aren’t inherently risky, unless they go on for a long time (meaning getting up around 30 minutes) or if the victim can’t breathe. Or if they’re in a dangerous situation, of course, such as driving, or riding a bike, or on the stairs, or in the pool… (Given this, we wondered if the Valium was really necessary yesterday morning…) The other good news is that it’s common for kids with epilepsy to just, well, grow out of it.

Michael and I are doing pretty well. We make a good team, and I’m grateful that he can be at the hospital. He told me people keep commenting on how calm he is, but he says he doesn’t necessarily feel that calm. I could really see it when I was visiting them last night after Big Band practice. Michael was in the hall, waiting for Jade to fall asleep. Whenever she got quiet or if he heard a thump from the room, he’d rush over to the crack in the door to check on her, worried another seizure was starting. Only to hear her start chattering about something, telling him she was just fine and not sleepy at all.

For my part, I had a couple of good cries at the hospital yesterday, but I am feeling relatively calm. I can’t explain it, but after all we’ve been through this weekend, I just believe that we’re all going to be okay.

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