When she was still completely out of it in the semi conscious state.
Last Tuesday morning L and I woke up early then both went back to sleep in my bed. When I woke up a little after 9 she was still asleep..
and I noticed she had wet the bed... which isn't normal for her at all. I ran some bath water and came back to the bed to wake her up for a bath.... but she wouldn't wake up. I tried to stand her up but she just kind of hung there limply in my arms. She would open her eyes briefly but wasn't able to really look at me or respond to anything I said. Every time she opened her eyes they were glazed over and rolled to the right. I laid her down at the end of my bed and called my husband upstairs (he was off work all last week for Spring Break.)
L has had several complex febrile seizures in the past but this entire episode was completely different. Typically she has convulsions, passes out completely for awhile, has convulsions again and then wakes up completely.. all within an hour. On Tuesday I didn't witness any convulsions at all. Even though I was asleep her seizures have woken me up in the past so I would be surprised if I slept through them since she was literally laying right next to me. If she did had convulsions on Tuesday I must have slept right through it or either it happened quickly while I was out of the room getting coffee downstairs. In any case she has never been in a semi conscious state after convulsions... at least not that we have been aware of. Because this episode was so different than anything we've witnessed previously I didn't feel comfortable giving her the anti-seizure meds that we've never used before. My husband thought we should drive her to the ER but I wasn't comfortable with that either... just because this episode was different. (Looking back I think giving her the anti-seizure meds and driving her to the ER ourselves would probably have been fine but I totally panic during her seizures ESPECIALLY if it is different in any way from a previous one.) I ended up calling 911 and riding up to the hospital in the ambulance with L. The entire time she never fully woke up, didn't look at me or the EMTs, focus on anything around her or respond to anything we said. She DID say "Ow" a couple times and struggled to pull away when the EMT tried to draw blood in the ambulance and in the ER she said "Mommy, mommy" as an EMT took her off the stretcher and put her in the bed in the ER. Other than that she didn't say anything, acknowledge anything we said or look directly at anyone or anything until 2 o'clock in the afternoon.
She had started waking up and then gone back to sleep.
Around 2 PM her IV of fluids was finishing up and that's when she started waking up completely. I can't believe she was in that semi conscious state for so long! Well.. I call it a semi conscious state.. I'm not sure how the doctors would label it but she definitely wasn't fully awake or aware of what was happening during that time. I asked her later if she remembered riding in the ambulance and she had no memory of it.
By 2:30 she was awake and alert enough to watch cartoons on my tablet for awhile!
She was also hungry and wanted my food from Chik-Fil-A!
Here she is eating a piece of waffle fry. :)
Ready to go back to sleep after watching the tablet for a little while and eating some food. I was a little tired and emotionally drained myself.
We left to go home not long after this and she went right to sleep after we got home and slept for a few hours. These things wear her out!
We had a long awaited appointment at Shriners scheduled for Tuesday afternoon which we, obviously, had to miss. My husband was off work all last week and this would have been his first visit to Shriners with L. She is down to only one appointment/hip check-up a year at Shriners now.. which is great! But we found out a few months ago the she still has a small leg length difference that is effecting her back so we were anxious to address that at her appointment. I need to call and reschedule tomorrow for sure!
The day after her latest seizure/episode L was back to her normal little self. And on Thursday we went up to Asheville for a couple days where she was just fine and had a lot of fun! She still has a cough and congestion though... she's been fighting it off and on since the end of January... so we will be trying to stay home as much as possible the next few weeks especially with the corona virus going around. I was totally not concerned about the Corona virus AT ALL until L went to the ER last week.. then it hit me how easily she gets everything and how long it takes her to get over things. :/ Right after that we started getting notices.. one after another.. about the older kids' schools closing, sports and after school activities being canceled, church services moving to online only and everything else. I'm definitely not panicked about any of it of it but since we're pretty much under house arrest for awhile anyway it's definitely a good time to keep everyone home and let L fully recover from whatever she's been fighting for several weeks now.