Darling - Complicated Continued

So the last less than 48 hours have been nuts up to this point if you read the first part of this.

It's now a little before 9pm that Wednesday night and Darling started to seize again. We called the discharge number for the ER that we were just at and Darling was just starting to come out of the seizure while we were speaking with the doctor we had seen. The doctor said he'd call over to try to speak to neurology at the main hospital we were scheduled to consult with. He said he'd call us back.

However, before the doctor could call us back, well, here's what I wrote in Darling's journal: "you jerked up (from being asleep on my chest) & awake. You let out this awful yell noise, then your head started to turn like an owl's and you started to turn blue: freakin terrifying! We called 911 and took the ambulance back to the hospital we'd been at even though you were waking & getting your color back when EMTs arrived. Your other seizures were stressful & scary, but I felt somewhat prepared, comforted with "simple febrile seizures" that you'd be tired after, but otherwise ok. The head-turning and turning blue were a whole other ball game - maybe it wasn't just a febrile seizure? Maybe these weren't simple or without complications or damage being done?

After lots of ideas and added worry and some bloodwork (which holy hell made me cry along with you), we were told we needed to go to Children's Hospital main campus and that we'd go by their special medical transport team."

And when we got there and were admitted, we finally slept ... Darling and me on some weird, foamy hospital sofa - exhausted and a bit relieved with the specialty care we were now being monitored by, we finally slept.

This event, well, really, series of events/ seizures were overwhelming. I remember at one point while we were waiting for the EMTs to arrive for that last, scary & different seizure, that I just lost it: tired and stressed and scared, I just started hysterically crying "I don't think I can do this." I'm not entirely sure, looking back, what "this" was or what sort of options I thought I had (ha!) because there you are, as a parent, with no options but to hope for the best. 

If there was any "rainbow after the storm" moment in the whole ordeal though, we lucked out that after being admitted to children's hospital, there was a wonderful neurologist in charge of rounds during Darling's stay. I felt like we could have conversations with him and that we were a part of decisions being made. (I'd come to find out this isn't always the norm later...) 

One of those discussions was whether or not to start Darling on daily anti-seizure medication. The doctor in charge, we'll call him Dr. F, said he was comfortable with whatever decision we made. Darlin'g EEG was normal and we had an MRI scheduled just to be on the safe side. Going back and forth, we all decided at that time not to start daily medication. Considering Darling's seizures continued to be with sickness/ fever and were always short enough that we didn't even have to give the rescue medication (given if a seizure is continuing past the 5-minute mark), we didn't want to risk our sweet little girl being compromised with the side effects of the medication. I wrote: "Everyone made comments about how bright & sweet you were - even in such a strange place and even being so sleepy/ exhausted... we decided not to start meds. The cost/benefit just didn't seem worth it, we thought. We thought - your dad actually spoke up first. The meds have an adjustment period (as all do) and there are some behavioral side effects. So, we were looking at meds that might not even help and that would compromise your awesomeness"

With that decision made about not starting meds, an MRI scheduled and a follow up already scheduled (remember this all happened before we even went to our "initial" consult), we were discharged and sent home.

I'm happy we made this decision too about not starting medication because, in the long run, Darling didn't seize again for about 5 months (when the flu took our whole family down). If we had started meds, we never would have known about that stretch - we would have just assumed it was the medication keeping the seizures at bay.