We got here about 7:15 Monday morning (on 8-9-10!) after Sadie had pretty much woken up around 2 and never really went back to sleep (maybe a short nap in the bouncy seat). So, we were all tired and cranky to begin with. But people at the Children's Hospital (PCH) are so nice, and they welcomed us no matter how whiney or cryee we were...mostly Sadie was this. Luckily, we had brought the bouncy chair with us, so Sadie was able to bounce for most of the morning, when they weren't squeezing her, and listening to her, and undressing her and measuring her. However, once they put on the EEG electrodes, we were told the bouncy chair 1. was too much movement on her head where the electrodes are, and 2. was too much motion and interfered with the EEG reading. So, we had to give it up cold turkey.
We met a new neurologist, Dr. Williams, the one recommended to us by our pediatrician (everybody LOVES our pediatrician, by the way...I think we hit the jackpot with her!). In the 20 minutes we talked with him, we probably got more useful information than we've EVER gotten from Dr. Jarrar in all our visits combined!! He said he was going to go ahead and make the diagnosis for cerebral palsy for Sadie (Dr. Jarrar simply told us they can't diagnose until kids are 2, but she'll have it for sure), and he really made sure I knew what that diagnosis means. Then he went the extra mile and called the library here at the hospital and had them put together a packet of information (complete with an available book list) about CP for us, and told us to check out the CP You Tube channel. When I mentioned that we don't communicate well with Dr. Jarrar and he's been recommended to us as a neurologist we might want to switch to, he told us that if it's determined that she's not having seizures, he'll give us a schedule to wean her off the phenobarb, then we won't really have to see neurology anymore unless she starts having seizures again at a later date...which is realistically possible. Then he mentioned that her muscles are tighter on one side more than the other and wanted us to talk to a habilitation therapist (I think Dr. Jarrar mentioned this therapist, however, all she said was we needed to see him...not how, why, or who he was). This therapist, Dr. Rabin, came in later and mentioned that we could get a brace for Sadie's trunk to help her with sitting. He also said there's medicine to help with muscle tone that can help her have more control over her limbs (which would be nice as she's starting to sort of bat at things and reach for them). We're going to try this medicine while we're here in the hospital because one of the side effects is that it lowers her threshold for seizures, Dr. Rabin thought since she's being monitored right now it'd be a safe place to experiment. (the other side effect he mentioned was sedation...which I don't like, but on a low dose it might just be enough to make her tolerable)
Once the electrodes were put on Sadie's head, which she HATES, she continued to scream for another 3 hours!!! We had no bouncy chair, so I was stuck just letting her tire herself out...which you would think would be short seeing as how she was short on sleep. Nope, not my daughter!! Unfortunately, we are also being video monitored, so not only could everybody in the hall hear her screaming, but most of the staff could also SEE how miserable we were. However, this turned out to be a blessing once she finally fell asleep because they knew how long and miserable the going to sleep process was, and they knew not to disturb us. So, we had 3 good hours of napping undisturbed. Luckily, my dad came during this time and I was able to hand Sadie off to him and get a break. There's no way I would have been able to sit there for that long with her! And I was able to lay down for a few minutes as well. It's hard to move around with her anywhere because she's all wired in and whenever you go anywhere with her, you also have to take this "battery pack" pouch and make sure none of her cords are tangled. It's not easy if you're by yourself.
Later in the evening, Brian came and we were able to have dinner and get Sadie her medicine. She luckily went to sleep pretty quickly. It was funny because her bedtime is right about when the nurse shift changes, so our new nurse came in to check her vitals and stuff and I was like, "she's down for the night, sorry dude." So, we agreed I'd call him when she woke up, which happened to be about 1:00am. We had also talked to the nurse about giving her a second dose of melatonin at this wake up juncture (because she has a tendency to wake up and NOT go back to sleep for 3-4 hours), so we were able to give her more of that around 1:30 and in an hour she was back asleep...until 8!!
Sleeping was rough on me. When we first checked in to the hospital they had a crib in the room for her and told me the couch folds out for me to sleep on. I very politely told them there's NO WAY she's gonna sleep in the crib without me...as much as I'd like her to. So, they brought in a bed for us to lay in. It wasn't a bad size, we both fit in it pretty well, so I think that helped her sleep as well. But because they have to video her, we had to leave the lights on all night...OYE! Okay, for one, it was a little creepy to be videotaped sleeping (even though I bet we were pretty cute all cuddled up together), but we layed down about 8:00pm, and I woke up at 9:30 SURE it was probably 2 in the morning already. I couldn't believe it'd only been about an hour and a half!!! Sleeping with the lights on is ROUGH, like prisoner torture rough. Plus, to top it off, the night shift wasn't real quiet out in the hall at about 3:30, and starting at about 7am, they started coming in our room and checking things.
This morning, Sadie has been in THE BEST mood!! Sleeping really helps...if only I had had restful sleep as well, but I think we know what to do now at home. Dr. Williams just came in and told us he saw NO SEIZURES yesterday!! woo-hoo!! He said I almost fooled him when I was bouncing her (during her 3 hours of SCREAMING), but then he looked at the video and saw why it looked like seizures (see? good thing they do the video). He said of course she is still at a 70%-90% risk of developing seizures in the future because of the brain damage she suffered, but that if he sees the same thing today he'll let us go home tomorrow, with a schedule to wean her off the phenobarb. This is the best news we've had since we were discharged from hospice!
So, we're here for Day 2 in the PEMU. I'm going to try to get down to the library, and try not to be too bored! Keep praying for us!
These are the electrodes Geri put on her head, 25 of them. Each spot scrubbed, dabbed, and "cemented."
Tired baby. She was asleep within minutes of this picture!