Lilly HOME! Update Aug 13-14 – Adverse Rabies Vaccine Reaction Relapse

We’re so sorry about not posting  Monday. Now that Lilly is home the demands on my time and energy have increased 10 fold, at least. So, that’s the headline … Lilly is home. She is still a neurological wreck, but she is improving.

Sunday and Monday, Lilly could push up into a SIT and stay there (with help). Today, she can hoist herself into a droopy stand and can sort of walk (again with lots of help, using her padded harness). Her left side is CRAZY weak, so she often drags her rear left leg, but she is often keen to wobble around.

Her stamina is next to zero, so out the door and a lap of the nearest tree is enough, but she likes to get outside — after 6 days at the hospital.

We’re getting very little sleep because the high doses of steroids make her fussy. Plus, she remains entirely incontinent, so the clean-up is nearly constant.

All night long, I kept chucking wet / dirty blankets, pee pads, and towels out the door. You should have seen the pile of laundry I did this morning. Ick!

It’s tough to keep her clean and dry, but we’re doing our best.

Tom took from 10 pm to 2 am. I took from 2 am to 8 am because he needed sleep after a day I cannot even fully tell you about (long, scary story, with several frantic phone messages waiting for me when I got home from the veterinary hospital). He kept her outside in the shade with him from about 9 am to Noon, while he worked so that I could do laundry, eat, and go back to bed.

I was able to work a fair bit this afternoon, while she slept or played with a KONG.

To stop the verbal fussing for a while, I bribed her with a KONG this afternoon.

Once again, I feel like I need a PhD in theoretical math to keep her meds and supplements straight:

• 11 total
• 21 doses a day, with changes at day 5, day 7, etc.

For now, Lilly’s treatment is mostly the same as when she first developed her severe adverse vaccine reaction (meningoencaphalomyelitis) — though we’ve added 2 antibiotics for a while and a hormone to see if it helps with her urine incontinence.

At some point, as we begin (for the fourth time) to wean her off the steroid, there may be some additional rejiggering of her immune-mediator meds. Think of that as the player to be name later.

On the upside, this time around, Lilly is not suffering nosebleeds or diarrhea.

On the downside, her mobility is much, much worse than it was when she first came home from the hospital in February. I’ve gotten pretty good at expressing her bladder to try and cut back on the number of potty accidents … because she wants and NEEDS to drink a lot of water right now.

We go back next Monday (Aug 20) for a drop-off recheck and blood tests to make sure the chemo drug didn’t ruin her bone marrow. We go back for a real recheck appointment the following week (Aug 29). We already had a real appointment with our neurologist on the books, so we’re keeping it. Beyond that, I just don’t know.

I have NOT added up what the last week as done to our financial total, but it’s pretty discouraging. We saved some money on her hospitalization this time by bringing in our own meds and because Lilly didn’t have the extra $250/day seizure watch requirement.

Still, it’s a bill that makes a girl’s tummy hurt.

**

I may not have time to post an update on the blog more than a couple times a week, so don’t worry. Assume Lilly is improving. Assume we’re working hard at having her “hospitalized at home.”

I try to post little snippets on our Champion of My Heart Facebook Fan Page as well.

Thanks for your love and support.