Ironically, Dr. Mower called right before I left to take her to the appointment, and was pretty concerned about what I was describing to him. He said to keep giving her the Benadryl, and if the pediatrician detected hives inside Raquel's eyes or the inside of her mouth, we needed to get her to the hospital ASAP.
Of course she had blisters inside her mouth - which explained why she wasn't eating and drinking as usual. Her pediatrician called Dr. Mower a couple of times throughout her examination of Raquel, and Dr. Mower decided to admit her at Children's Hospital that afternoon. I seriously thought I'd get an antibiotic and some ointment and be on my way, so I was pretty shocked - and scared - when the admission department called my cell phone when I was leaving the pediatrician to give me her room number. But I knew that if anything was to happen, we really needed to be at the hospital instead of home.
I assumed they'd just monitor her for the night and we'd be leaving in the morning. Nurses were coming in and taking vitals every 3 hours, and the on-call doctors would come in here and there to check on her, and then Dr. Mower would come himself. Our overnight stay turned out to be 4 days and 3 nights, and I cannot tell you how happy I was when we were finally discharged.
It turned out that Raquel developed the worst kind of allergic reaction Lamictal offers, a condition called Stephen Johnson's Syndrome, which can be fatal. She was given an IV of a heavy dose of Prednisolone - which she was just previously weaned off of - because in order to get rid of the rash, steroids were needed. Ointments weren't an option - it had to be treated from the inside out. She was on Tylenol every 6 hours, Benadryl every 4, plus needed her usual dose of Keppra 3 times a day. I was actually happy after the first day when they decided to put an IV in for the steriod. I was having to give that to her twice and between that and all the other stuff I was giving her, she was becoming very aggitated and I'd have to call a nurse in to help me force it in her some of the time. Fortunately, the Benadryl made her very tired, and she mostly slept the first couple days. Giving her the oral Prednisolone wasn't clearing up the rash fast enough, which is why the IV was needed.
Of course I took pictures - they just aren't the most fun to look at. Here she is all checked in with IV in place, holding the stuffed animal Gabby brought for her to sleep with. They put this velcro cast thing over it and would just hook her up to the machine when they needed to give her the steroid. That was nice because she was able to walk around the room if she felt like it. We'd also do laps around our floor to pass the time.
Here she is kicking back with Dad.
Sleeping soundly during the day. If you look close, you can see the rash on the back of her arm. This was the worst area - and is still the last part remaining. Although faint now, it's still pretty noticable. They say that it will continue to fade over time and that there shouldn't be any scarring.
Resting comfortably at night. We were directly above the Emergency Department, but she slept right through the ambulances/sirens. And our floor was anything but quiet - doors constantly slamming, equipment & beds being moved around. I didn't sleep much, so I took pictures and played games on my cell phone.
On the positive side, Raquel has been seizure free since the day she was admitted to the hospital on the 16th. She is eating and drinking well, sleeping like usual, and doing great at school. The only change we've made is adding the Prednisolone back in her system. She's supposed to be weaned off of it again, but I've been enjoying no seizures and have kept her on a very small dose. Today I spoke with Dr. Mower about that, and he, again, stressed the importance of her being off of steroids - even at a lower doseage. He said besides the organ damage, it can also stunt her growth and cause osteoporosis, and asked me to stop giving it to her today. If seizures resume, we'll go from there.
Here's a picture Gabby took of them in the car on the way home from school. See the chubby steroid face she's sporting? Her stomach looks like that, too.
But besides the chub, she's a happy little thing. I love her so much!
Again, I find myself reflecting on why I'm in this position, why my daughter (and family) have to suffer through this, and what the life lesson is. Maybe I'm educating people through her blog. Maybe I'm finding inner strength I never knew existed. I don't know. But what I do know is that it could be a lot worse. I've thought about the families we've shared our room with throughout our stay and find it very humbling. From the tricycles on the patio with IV equipment hooked up for chemo, seeing the little bald kids in the playroom, the husband and wife learning how to sponge bathe their cerebal palsy child that just had to have a feeding tube surgically implanted, to the new mom of 5-day old twins who had one of them stop breathing. How can I possibly complain? I can't, because I'm blessed.
