They sent us home from the hospital on Tuesday the 7th, a little over 2 weeks after we first arrived — far earlier than I’d expected.
I was hoping to write a post about how after speaking to a psychologist I now have a much better undrstanding of my feelings around the feeding tube.
I was hoping to write a post about how it’s now been nearly 3 weeks with no visible seizures.
I was hoping to write a post about how glad I am that we’re home.
And all that is true.
Because, incredibly, miraculously even, Eloise hasn’t had a noticeable seizure since the day they put her on the “Dravet magic 3” combination of valproic acid, clobazam, and stiripentol (I say noticeable because apparently she had a seizure during her EEG the day before we left the hospital, and either I didn’t notice it, or it was at the 10 minutes at the start when I wasn’t there). The madness of the 50-70 per day seizures is over (although Eloise’s doctor fears this respite might be temporary).
I want to be happy. I want to shout from the rooftops that she made it. That we made it. That our life can return to normal.
But.
The problem is we don’t really have Eloise back.
Eloise pre-hospital stay was active, playful, giggly, wiggly, cried in frustration during physiotherapy, easily drank full bottles in between meals, loved the sour cream and the taco pie and egg casseroles she ate every day, and insisted on eating all of our coffee foam from our morning coffees.
But Eloise now? She’s a shadow of her former self. For the most part, she just wants to sleep almost all day long. And she doesn’t want to eat. Or drink.
As her parents, it makes us worry.
Two teeth started to pop in a few days before we left the hospital, so we know at least some of her refusal to eat or drink is definitely related — she won’t take her fingers out of her mouth.
But it might not all be teething.
Side effects of these drugs include sleepiness and decreased appetite.
I’ve heard that can take some weeks for the body to adjust to new meds. That, soon, things may return to normal.
I really hope so. Cause this mom grows more worried as the days pass by.
I want our Eloise back.
We miss her.
Keep those good vibes and prayers comin’.
Mallory, Eloise, and Brian
Eloise The Tiny Fighter 