Wednesday, November 16, 2016

Now disabled *and* chronically ill (Part 3)

C.'s elbow and the latest sore
[Written Sunday, November 13]

We've been home for four days now, all without the Hubby who is overseas. We were reassured that nothing untoward in the next week was anticipated by any of the doctors. But here we are, already seeing several worrisome manifestations.

The ascites seems to have returned. Her stomach seems swollen and hard, though less so than it did before her hospitalization.

Also, her hands are plagued with blisters that, after bursting, remain open sores for a long time.

Finally, there's a large new sore on her elbow accompanied by swelling and redness that had me deliberating over an ER visit.

Fortunately, my older daughters were around with counsel and support and we all decided against the ER. Fortunately it was the right call - after a night with the iodine-and-bandage treatment, the area surrounding the wound had subsided.

But we're not out of the woods and the visiting nurse was duly impressed with C.'s elbow when he saw it this morning - and he usually downplays C.'s pressure sores.

These days, I vacillate between acceptance of the gastro's dire prognosis and hope that our optimistic pediatrician knows better: "She'll probably be fine after she's weaned off the VA" he assured us.

We are now down from 700mg/day to 400mg/day of Valproic Acid. I haven't managed to get the Vimpat script yet so we're in risky territory. But I may hold off with it even after I've purchased it. I am dreaming of having C. on cannabis alone and enjoying some pleasant surprises.

Of course that would mean resisting the doctors pushing that Vimpat and I'm not sure I'm up to the challenge.

Just to offset some of this doom and gloom, here's a clip that is bound to send your spirits soaring. .


Elizabeth said...

I'm so sorry to hear of C's continued struggles. I'm going to light a candle for her -- for light for all of you.

The Sound of the Silent said...

Thanks so much for your consistent support and I hope Sophie is stable these days.