Darling - It Got Complicated Quick

From my journal for Darling:

"Oh my, girl ... last week we had 3 ambulance rides and 5 hospital trips because of seizures you had..." And some of those trips to the hospital, we drove ourselves. 


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Let's see how this went down, but I'll be honest, the details get more blurry the more sleep deprivation kicked in:


On a Monday into Tuesday, Darling had a temp and seized, but stopped before we could even speak with 911. So, we took her ourselves to the local ER where we hung out for an hour or so until Darling was more herself (out of the "post seizure"/ postictal phase) and went home around 2AM to start switching between Motrin & Tylenol to try to control a fever.


Getting ready for bed Tuesday night, Darling tensed up (not full body shakes) and relaxed. "What was that?" No sooner could we question it than she did it again - tensed up, wouldn't look at us and Darling was just quiet (not like herself). Darling relaxed again, but remained quiet and didn't seem herself. So, off to the ER again we went. Since we came in ourselves, we had to wait in the waiting room, which felt like forever ... especially as we sat there considering multiple seizures within 24 hours was something we'd been told would be concerning/ and indicator this was something more complex. When we finally were taken back, Darling was more than back to herself. So, we were given the options of going home to consult with our family doctor in the morning or being transferred to a hospital with a pediatric neurologist. The ER doctor felt confident with either decision we made, so seeing how Darling was back to herself and we were all beyond tired, we thought it best to follow up with our own doctor and go home to get some rest. We left with the ok to give Tylenol and Motrin more frequently and a personalized dose for both based on Darling's exact weight. We got home around 2:30AM.


That day is blurry after the little sleep and multiple ER trips in 24 hrs (both during usual sleeping hours), but I got us up early in the morning to get in first thing at our pediatrician's office during walk in hours. Darling did not have a temp then and we left with a list of neurologists to contact. I called from the parking lot to set up a consult... and cried a lot.


Around 4 or so that same night (it's Wednesday now), I was settling down to rest with Darling after the last couple of crazy nights and early morning... and she started to seize. Quick - just a few minutes, but again it was in the 24 hour period of the last one. Off to the ER we went, by ambulance this time and to another hospital since it was a satalite for where our consult was scheduled with. They were so nice! The doctors reassured us these were most likely febrile seizures, though considered "complex" now with the frequency of the last few. They explained how some parents come in for every seizures to hear "It's ok", while others stay home to recover unless anything concerning happens. They gave us a rescue med* script for any seizure longer than 5 minutes and we headed home feeling very tired, but more prepared with the script in hand: a tool, something to do other than just wait for EMTs to arrive. 


This is long and, believe it or not, isn't over. So I'm going to break it here and will fill in the rest next week.


* Tips on Tuesday tomorrow is going to touch on rescue meds

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