Monday, May 14, 2012

Monday, May 7, 2012

Seizure Update

Becca has continued to be...totally fine.  I just talked to her pediatrician, and he wants to do the EEG before we call neurology.  If the EEG comes back normal, he's ready to chalk it up to febrile seizures and manage from there.  (If that's what it is, there's not much managing to be done - just watch her fevers, treat with Tylenol, and be prepared to handle a few seizures here and there.)  If the EEG shows some areas of abnormal electrical activity and connectivity, we'll see neuro to see what they think.  So that's that.  Don't know when it will be scheduled; I'll let you know.

Saturday, May 5, 2012

Back at the Hospital

I know I've been a crappy blogger lately, and I'll try to fill you in on all kinds of goings on, but I wanted to go ahead and tell you what happened this week with the little Boo.  The Big Sister Boo, that is.  The formatting is weird because I'm copying and pasting from another webpage, but I'm sure you'll manage.  :)  I'll let you know what the docs decide to do next week.  (And briefly: me and baby boy (definitely a boy) are doing fine and go back to the doc this week.  So far, so good there!)

[Background: Becca has had 2 other seizures in her life. One was clearly hypoglycemic-related (blood sugar was 45 at the time), and the other was related to an illness, though not necessarily febrile, as by the time the ambulance arrived (I was driving down the interstate at the time - awesome), she didn't have a fever. That time, they kept her overnight, gave her antibiotics for the underlying illness (which we had been at the doc for that afternoon), and sent us home with a med in case she seized again. That was over a year ago and probably related to a tick-borne illness.]

Becca came home from school at noon on Thursday (normal time) and told the babysitter that her tummy hurt and she wanted to lie down. She felt feverish, so the babysitter gave her Tylenol (I told her not to bother with a temp b/c I trusted her judgement that she was feverish but not crazy hot), and they had a lazy afternoon sleeping and watching tv. 

I came home at 6:30, and she ran to the door, jumped up and down, etc to greet me. So she definitely had some energy. She still felt warm, but I planned on giving her Tylenol at bedtime (just an hour later). She still wasn't crazy hot or anything.

So by 7:30, I'm getting her bedtime stuff together while she's watching baby videos of herself (so cute). I'm assembling her feeding tube stuff in the kitchen and hear her making some whimpering-type noises from the couch. I check it out; she's seizing. I get her rectal Diastat kit prepped; we're supposed to give it to her if a seizure lasts longer than 5 minutes. It lasts for at least 4 minutes (assuming it wasn't going on TOO much longer before I noticed), and then she stopped shaking but was still out of it and not really responding for another few minutes. After about 15 minutes, she's responsive, but kind of drunk and -- this was the scary part -- unable to talk. She would answer questions by nodding or shaking her head, but couldn't get words out. If you've even seen someone who has had a stroke trying to talk, that is what it looked like - sticking her tongue out a lot, trying to form words with her mouth, but not being able to do so -- or even get any sounds out. Then she vomited - yellow, bilous-looking stuff. I took her temp after the seizure, and it was 104.3. Blood sugar was 173. Breathing was fine, didn't appear to desat at all.

The on-call ped said that she "absolutely needed to come in and be seen," so I got our stuff together (sad how quickly I can pack a hospital bag for me and her these days :) ) and waited for DH to get home (5 minutes away). If John hadn't been close, the ped was going to have us call an ambulance so that I could watch her during the ride. 

So we drive 40 minutes to the kids' hospital, are immediately triaged (never given Tylenol because at that point she wasn't even feverish - at all). She started talking (slowly) on the ride in, which made me feel better. In fact, her first verbal response was her Simba "ROAR" when I prompted her with the line from "I Just Can't Wait to Be King." Pretty adorable. So - we go through triage, and they send us to the waiting room. For 3 hours. By the point, she's pretty much herself, though still her sick self, and she pretty much laid in a chair and slept. She's 3 hours behind on her tube feeds (not having had anything since lunchtime), so I start bugging the nurses to get us back to a room so we can start feeding her, or we are going to be looking at a hypoglycemic seizure on top of the first one. We even considered leaving because I felt like what she needed most was to sleep and get her feeds, but I was afraid insurance wouldn't pay if we left without being discharged.

Finally, we get back to an ER room. The nurse checks her out; vitals are fine. After about an hour, we see a resident. All is well. I'm lying on the cot with her, and John is miserable in a crappy chair. After we had been in the room for 3 hours - now it's 3 am - we still don't have her hooked up to feeds b/c the nurse needs the docs to order it, and we haven't even laid eyes on an attending yet. I mean, I'm glad we weren't in the trauma room keeping them all busy, but, really, 6 hours later, I would have thought an attending would have at least heard about us. So I go out to the nurses' station to remind them that we are here, and one of the nurses is quite surprised to hear that we've been waiting in a room for 3 hours. Yes, and 6 total, thank you. And at this point, John is "sleeping" on a sheet on the emergency room floor. Ew.

After that, things start moving; we see the attending, he orders a strep test. I remind them about tube feeds, and that *eventually* gets started as well. Becca was a super champ, of course, even "roaring" again so that the nurse could perform the strep test. The attending also wants us to get a urine sample. Right. Get the not-potty-trained 3-year-old away from home to pee in a cup. We give it a couple of tries, but give up, not wanting to traumatize her to the whole peeing on the potty thing, which is *finally* kind of getting the hang of. We ask if they have to have it (the only other option is to cath her - ugh), and the docs says that basically, he wasn't looking for anything in particular, so never mind. Phew. Feeding pump alarms every 2 minutes (literally), so John and I take turns sitting by it and restarting it every time. The nurse doesn't know how to use it - we had to teach her. (But really, she was wonderful...we have just dealt with a lot more pumps than she has.) Strep test comes back negative. Docs don't know what else to do; nurse suggests they send us home. Great idea. So we are out the door about 5 am (after arriving at 9 pm), with a *suggestion* to call neurology to set up an EEG and consult. 

We drive through Krispy Kreme (which just happened to open early on Friday mornings - thank you, Jesus :) ) and get home about 6. We all sleep until 11 and proceed through a normal day and weekend, albeit on the lazy side. By the time we got home, she was COMPLETELY FINE. That's the oddest part to me, and kind of nerve-wracking. I mean, if the seizure were really related to the (brief) illness/fever, why/how could she bounce back so quickly? I mean, the fever was COMPLETELY gone by the time we got to the hospital, and she was herself the next day, even without sleeping much. So that concerns me that there might be some underlying seizure disorder that we are just now seeing. The good news is, though, that if there is an ongoing condition, it appears to be mild, since we've only seen 1 seizure a year (though who knows if others have happened during the night, etc - but still, if so, she bounced back quickly). I doubt that she'd have to go on full-throttle seizure meds, but it's another thing to watch for, I guess. 

Background