Now disabled *and* chronically ill (Part 2)

My daughter's hand, swollen as a result of an unsuccessful
insertion of an IV port

[Written Thursday November 10]

I wrote the previous post after C.'s first day of hospitalization on Sunday. She was subsequently drained of 4 litres of abdominal fluid which itself triggered a string of seizures. The woman who administered the ultrasound and the drainage procedure - presumably an M.D. - was a pain. She addressed me as "Mommy", initially instructed me to leave the room but gave me a reprieve provided I didn't touch C. "if I think it will help her".

When she was poised to puncture her abdomen, she told me "Now Mommy, you mustn't look." Honest, she said that to me. And she's at least half my age.

When C. began seizing, she donned a neurologist's hat and told me that C. needs benzodiazepam asap and that she'll get me some. I assured her that this sort of thing has happened before, will eventually pass and certainly doesn't warrant any benzo. She insisted that my past experiences with strings of seizures were irrelevant and that they must be halted immediately because "they're harmful for C.".

Thanks for the "Epilepsy 101" lecture, I thought.

Ultimately, the Hubby arrived about a half an hour later with our trusty THC oil from home and after dosing her with eight drops the seizures stopped cold.

We had been instructed by the neurologist to delay the valproic acid weaning because of the bout of seizures. But by nighttime, after hours of calm and with no neurologist around at that hour, I just began reducing the dose.

After several blood tests, urine collections, IV albumin and IV fluids and another visit from that gastro doctor, C. was pronounced able to go home. For those wondering, the IV fluids were to replace the fluids that were removed. Only this time, they'll be properly distributed throughout her body. Trouble was, though, that the staff got a bit carried away with the quantity and C. ended up with a swollen face.

By the time we arrived home, her left eye was totally sealed shut.

The kind gastro told us to treat C. as chronically ill from here on in and to anticipate regular, even weekly, draining of her abdomen. At my insistence he gave a prognosis: 2-5 years.