Calm Amongst the Chaos

So Lily and I headed to SLC on Sunday afternoon. We arrived at 7:30pm, got in a cab and got to the hospital after 8pm. We arrived hungry, but the cafeteria was closed. They did have a parent room and I found a yogurt, pudding and milk for Lily. I had a microwavable burrito and then we went to our room. It was pretty decent considering it was free. Two twin beds, a big handicapped bathroom, blinds that wouldn’t close and thank God a TV, with no remote, but there was a TV.
I knew Lily wouldn’t be able to sleep on a twin bed with no rails so I put her mattress in the middle of the bedspring of her bed and my bed; she slept really well and safe that way.
Monday we got up went to the cafeteria and ate. The staff there was very friendly; we ate well and headed over to wheelchair clinic. I met two very nice men, one in charge of wheelchairs and the other the PT. After over looking her chair they recommended that we kept her frame another year and we just “extreme makeover” it. They said if we go up in size it will be large and much heavier and will last her 5 years. I agreed that I like the weight of her frame while trying other chairs and agreed to fix up her chair. And by doing that we were able to leave by Wednesday instead of Friday.
So after a long and very throughout fitting we left Lily’s chair in their hands and borrowed a little Pixi chair far too small for her. The rest of the day was eating in the cafeteria, trying to go for a walk, but it was really hard since the hospital is on a steep hill. I knew I would never make it back up, so we went back to our room. They had a large play room, but there wasn’t much for Lily to do. I felt bad, but we spent a lot of time holed up in our room.
By late Tuesday afternoon we got her chair. It looked great. She actually looked small in it. Before she looked like the hulk in it. We have hopefully another year to go, unless she has a huge growth spurt, highly possible, but we should have another year to go in the chair. They really cleaned it up. It looks great.
We headed home Wednesday, the flight there went so smooth. I was nervous to travel alone with Lily, but everyone was so helpful, I had no problems. My luggage was there when we made it down to the baggage claim and it was just a smooth transaction. Unfortunately the way back wasn’t as smooth. I had helpful people and I was grateful, but the plane of late, baggage was late, etc. It was a crazier security situation in SLC and I was a little stressed, but we survived and her chair made it on and off the plane twice with no harm done. Andrew and Andi were waiting for us when we got off the plane that was fun!
Lily and I got a bad cold over there and we have been nursing our colds at home since. I don’t know where we got it, but with the 112 degrees outside and bad cold, life isn’t a blast.
Today Lily and I are home alone. Andi went to school, Andrew is at work and we are bumming. I am catching up on my blogging, laundry, and rest. It is nice. We may go into the pool a little later; it would probably do us some good to get outside.
So that was our trip.
Now about this study, I did something I wasn’t supposed to do, but you know what. I don’t care! I was wrong about thinking the increase was helping. She had about up to 3-4 grand mals (tonic/clonic) a day. She was having a seizure sleeping, waking and sleeping. Reminded me a whole lot of where we were before brain surgery and I AM NOT going down that road again. Lily needed to be back on Vigabitrine and I don’t give a flying F what anyone says about the study. Guess what; one day on Vigabitrine, the GM’s were gone. She needs that med. She should have never been taken off that med and I am mad we went that long screwing around with that other med. It made her seizures worse.
So I got a call today from the study RN. I was waiting until next week before calling her. I wasn’t in the mood to plead my case quite yet, but since she called, I spilled. She seemed a little frustrated, but I said sorry I am done watching her suffer, watch her regress in therapy and just done watching her seize when I knew she didn’t have to. I’m so glad we had a whole box of that left. Study RN said she’d look into some stuff and call me back. I don’t care; we fulfilled our agreement to this thing. The paperwork I signed says I can back out AT ANY TIME, so there. Done! If they can keep us with her taking Vigabitrine, fine, but I don’t care if they can’t. By the way, I wouldn’t have done that if I didn’t feel it was absolutely necessary. Her neuro said to up it twice and if that doesn’t work than we gave it a chance. He is now out of town now and I didn’t want to deal with one of his colleagues that don’t know Lily. I know what works and what doesn’t.
So I will let you know what happens from here. I feel like I completed my end of the bargain and Lily deserves more.
I have a tough day ahead tomorrow. I will help mourn my friends lost daughter. I am so sad for her loss and am not sure what to say. I just pray I can just be there and listen. It is just not fair. Send prayers to her for comfort.