To hospital, to hospital... Home again, home again (but no jig)

Home-prepared food for Haya 

 

To market, to market, to buy a fat hen. Home again, home again, jiggety-jig...

Wikipedia

Start with this background: "Haya's update: It's a downer" [February 18, 2021]

I wrote the following this past Sunday night:

At this point, even rectal Diazepam is stumped. It used to knock Haya out for hours. Even an old 2018 dose had that effect a few months ago. Today, the seizures have broken through after an hour. I fear we are approaching the last option - the ER. It's a nightmare we make every effort to avoid. But these seizures are destroying her.

And wrote this on Monday:

Well, we finally succumbed and decided to bring her to the ER. At that point, Murphy's Law kicked in and seizures stopped. She hasn't had one since we placed her in the stroller at home for the trip to the hospital.

And then this on Wednesday:

Needless to say, Haya resumed her Status Epilepticus once we were in the hospital and several med strategies were employed:
Vimpat was resumed, starting with an IV surge of it, followed on Tuesday morning by a return to oral.
She was also given a low IV dose of Valium together with the Vimpat.

Today, the IV meds were stopped. We also learned that blood and urine tests and a chest x-ray eliminated the potential diagnosis of infection.

In addition, the neurologist has recommended adding on the modified Ketogenic Diet from tomorrow. The dietician called me to discuss Haya's food sensitivities (tomatoes) and has dispatched me to locate and purchase flax seed bread, She says it's manufactured by only one company in these parts. With our lockdown over since Sunday, local streets have been jam-packed throughout the day and I don't relish driving around in that traffic, from shop to shop hunting for that bread. And that's not all: If/when I do locate it, the dietician has instructed me to crush it in a blender which she advised me to bring to the hospital! Well, I made it clear that wasn't happening. 

(Gently) If I don't sound enthusiastic about the diet it probably stems from the fact that we tried it when Haya was around three years old and didn't achieve seizure control.

For what it's worth Haya was mostly calm tonight, ate with relish, and lifted her head off the pillow repeatedly. Here she is pointing her index finger to sign "Yes. I'd like to eat" and then opening her mouth even before the spoon reaches her." [Video clip to come]

I'm writing this on Friday and Haya returned home two hours ago.

I will (frantically) attempt to prepare her Keto meals for the first time. I just realized that the toothpaste we use may not be Keto-friendly. So I sent off the ingredients to the dietician for her verdict. My daughter, a pediatric dentist, just told me about a patient on the diet who needed several teeth extracted because his parents brushed his teeth without any toothpaste!

And now it's Saturday night:

The dietician nixed the toothpaste we use for Haya and offered an alternative brand which my daughter, in turn nixed because it's not only sugar-free but fluoride-free too, adding "It's as effective as brushing with water."

That concern is relegated to the the back burner. For now we are focusing on:

• Preparing and weighing meals
• Getting them into Haya without any dripping/spitting out.
• Counting the seizures.

So definitely no jiggetty-jigging yet.

PS The hospital water fountains were all covered up with plastic wrapping.

PSS Every so often when walking in the corridors, shouting staff would alert us "Stand back! Wait where you are! A Corona patient is being wheeled by!"\