Wow....life's been somewhat hectic since the last time I posted. Where to start?
Well, the new "Cube" room has been a real blessing....just so nice. I didn't really think I would like it that much--being away from her and all--but it has been nice to escape from time to time. The funny thing about it, is that between me and the day and night nurses, we are all named "Kelly," and of course, there are 2 Michaela's in the room as well....what're the odds of that???
I am currently living at the Ronald McDonald House down the street. Man! What a nice place! If you've never put any money in those boxes at the McDonald's cash register, then you need to sometime in the near future! The bedrooms are very similar to hotel rooms, and the main living areas are SO NICE. It houses 41 families at a time, and we each have our own pantry, our own mailbox, our own space in the huge fridge and freezer. Volunteers donate food or cook it in the ginormous kitchen, at least 2 meals a day. The pantry is stocked with all kinds of snacks, drinks, canned goods, baby food, cereal, pastries, whatever. There are free laundry facilities and secured, free parking.
The neat thing about staying at the RMH, is that everyone there has a sick kid like I do. We all have different stories, but they all sound vaguely familiar. We eat together, do laundry together, talk awhile. We see each other in the hospital, and it feels good to know someone there. When we get "home" at night after a day of staying with our kids, we ask each other how they're doing. We know the kids' names, their illness, their drug regimen. It's a community. A big, communal support group. A very neat thing.
Unfortunately, the RMH only has internet access on the main floor (not in my room--it's busted), and when I've been at the hospital, I haven't wanted to be on my computer, because I don't spend all day with Boo anymore. It just seems wrong to be online when I'm there to see her and spend time with her. So that's the reason for the lack of updates.
But I know you're anxious to hear about Michaela, so here's what she's been up to:
After my conference with Chief and Dr. Psych the other day, we started playing around with her meds. Out of the three she was on when we came in here, we are taking her off of two, and adding a third. We've also added a psych med to calm her down a bit. The theory behind all this, is that one of her long-time seizure meds started turning against her. Puberty is the likely culprit. However, the seizure control it gave her, made the decision a hard one to make. Michaela has tried and failed most every seizure therapy known to man, and having to take her off of one that actually HELPS (the seizures), is really an awful position to be in. Chief wasn't quite sure WHICH drug to replace it with.
But what they ended up doing is putting her on one that she used back when she was about 5. Even though she failed it before, she may not fail it now, since her chemistry has changed with puberty. At least, that's the hypothesis.
Chief told us that out of all the LGS patients he's treated, Michaela's condition is completely on the fringe. He's never seen anyone experience psychosis from that med (and he's treated kids with it for years--even as part of the original drug study), and Dr. Attending was really just astonished at how unique her EEG looked compared to other kids with her condition. It's almost as if she has something that just hasn't been named yet, but they're calling it LGS because there's nothing else out there to call it.
So back to the meds...
Well, the first night we had her on a half dose of her main one, a half dose of the other main one, and a third dose of a lesser one. Plus we added a high dose of the new (old) one. And the next morning when she woke up, we saw the old Michaela for a few minutes.
We hadn't seen her in over a week.
This was very encouraging, because it meant we were on the right track. After trying this, that, and the other thing, it seemed we had actually found the problem. Now, it was just a matter of completing the process, to see if we would get her back fully. If that happens, then it would be the first time Chief has ever heard of such a thing happening.
Leave it to my kid ;)
And sure enough, after completely eliminating that main drug last night, today is a better day for Michaela. She is mostly herself today, with just brief spurts of the psychosis we came in for. Today, Dr. Attending told us she was "not allowed" to be in bed today at all. She has to get dressed, play, eat (which she hadn't been doing), and do all the normal stuff she would do on a regular Saturday. This is in an effort to retrain her brain how to sleep at night (which she hadn't been doing fully), and how to be normal.
The major concern right now is breakthrough seizures. Since we're radically changing her drug protocol, there is a high chance she will start having strong and long-lasting seizures. There's also the possibility that she won't tolerate the new med more than a short time. Her brain has been "shocked" with all the changes, but once it settles in, it might reject the new chemistry we're imposing on it. She also has started "thrusting" her tongue and clacking it like a hungry newborn baby. This behavior is usually associated with mental instability, so I'm keeping an eye on that as well.
So we're still waiting it out for a few days. I pretty much refused to be discharged over the weekend, but wanted to reassess on Monday, and make sure she was in the clear. We're going to do a final EEG on Monday night, and if everything stays looking as good as they are now, then we should be discharged on Tuesday.
I am cautiously optimistic :)
And for the record, it was MY idea to take her off the med, and it was CHIEF'S idea that she would come back to us someday....
So we were both right....and that NEVER happens :)
For the first time ever, Chris and my parents were both with me in the hospital. Neither could stay for more than a few hours--Chris the afternoon, and Mom and Dad less than a day--but it was nice to have them there. I thought that it would be good to call a meeting between them, me, Chief and Dr. Attending. Chris and Chief hadn't even seen each other in 4 years, so it was good to catch up. Also, I hadn't spoken with him for a couple of days, so there were a few things I wanted to solidify.
Mainly, the next step in her testing.
He reassured me that even though we wouldn't be able to tackle that test THIS visit, he was pretty sure it had been scheduled for late November. He said he would check on it, and get back to me on Monday. Either way, Chris asked him how long it would take to go from MRI (the first test) to surgery consult--where we actually decide to go through with surgery (IF we go through with surgery). Thankfully, Chief thought about 4-6 months. That was a relief to my mind (hey, one down, 5 to go!). He hates to be nailed down to time frames (because there are so many different schedules involved), but I can't function without them, so he gave enough time to schedule the various tests, but not too long to frustrate me.
So that's the long and short of it. She's looking good, we're watching for any signs of seizures, and the testing schedule is moving along.
Oh, and I'm hoping to be home by Tuesday ;)