Wednesday, August 11, 2010

Day 2/ Night 2 in the PEMU

Another day down in the PEMU. Some things happened (like X-rays), and some didn't (like naps). Sadie screamed another day away, and then finally fell asleep an hour before daddy came. I've never needed a break from her so badly before!! And I did get a break once she woke up and Brian was there to watch her.

I went down to the library at the hospital and checked out two books. The first one is called The Out-of-Sync Child and claims it's the "parents' bible to Sensory Processing Disorder. I haven't started reading this yet, but I hope it has some ideas on how to help Sadie cope with her environment. The other book I checked out is called Teaching Motor Skills to Children with Cerebral Palsey. I might actually end up purchasing this book. It is really good and seems like the kind of thing we will want to continually reference as Sadie progresses. I just started reading this and it's like they KNOW my child, which makes me feel like the advice and exercises they recommend are credible. I'm excited about this book.

X-RAYS?! WHAAAA?!! That's the reaction I had. Sometimes it's like people at the hospital assume you can read their minds, so they just drop information in conversation like it's no big deal. Not much gets by me. I asked. The nurse told me some doctor I'd never heard of (let alone met) requested X-rays of Sadie's hips. I was sure they must have gotten her mixed up with someone else...but then she came back and told me it was actually Dr. Rabin (he's the rehabilitation therapist we saw the first night we were there). And actually, I was glad they were going to X-ray her hips, because I have hip issues that are hereditary, and her condition makes her prone to hip issues, plus genetics do too. The outcome was that her left hip is a little out of socket, so we are supposed to go see Dr. Rabin in a couple of weeks to talk about what to do about this. Because of my history they can't tell yet if Sadie's hip displasia is congenital or developmental, but I'm glad they're finding it now and not when she's learning how to walk.

Our night was rough, but that's to be expected with sleeping with the lights on. Sadie fell asleep fairly quickly once she had her medicine and her melatonin. Sadie's getting good at falling asleep nursing, but then letting go and not needing to nurse the entire time she's asleep, so I was able to sit there for a while with her while Brian and I hung out a little. And I met our night nurse. It was almost 7:30 and I mentioned to her that when Sadie wakes up in the middle of the night she can check her vitals (they have to put this blood pressure cuff on her and it squeezes and she hates it) and give her her (new) medicine, and more melatonin. This worked SO WELL the night before. What I didn't realize was that the night before we had a competent nurse. So, Sadie and I laid down around 8:00 and she slept soundly, while I laid there and listened to the announcement that visiting was over, then listened to people saying goodbye and leaving, then listened to children protest to shots/going to bed/etc, then listened to babies crying...finally I turned on some white noise. But, our nurse came in around 9:00 and listened to Sadie's heart and lungs and tummy, and we talked again about how I'd call her when Sadie wakes up (between midnight and 1) and we can do meds and melatonin. 1:00 came around, Sadie woke up, and I held up my side of the bargain. However, nurse "doesn't-get-it" had to call the doctor to approve the melatonin (even though we gave it to her the night before AND I told her twice I'd like to give it to her again), then wait for the pharmacy to send it up. It took almost 2 hours, and by the time we gave it to her we had lost our window of opportunity to go back to sleep peacefully. I ended up having to move to the little couch and nurse her to sleep, then bring her back to bed. Normally, this wouldn't be a big deal, but 1. we were sleeping with the lights on and I was REALLY tired and cranky, and 2. she was all hooked up and moving her takes 2.5 hands (but it's easier with 3). Needless to say, I'm super mom and was eventually successful at not only putting her back to sleep, but transferring her to bed without her waking up. Whew!

Morning came too soon, and people started coming in and out of the room hustling and bustling about. Before we realized, there were 2 ladies in there removing Sadie's "headdress"!!! They never told me, but I figured it was a pretty fair assumption that we were going home! Soon after Dr. Williams came in to talk to us. I love what he said, "we treat seizures, and since she's not having seizures and there's no EEG seizure activity, there's no reason for her to be treated." I think we probably knew this 3 or 4 months ago...but the medical world needs real, tangible evidence. Now we have that evidence and we can go home and start weaning off the phenobarb. It's going to take 6 weeks to wean Sadie down because it's important her body doesn't go into shock or withdrawals from being on it for almost 7 months, but then we'll be done!! Dr. Williams was careful to tell me that Sadie still shows a lot of tendencies for seizure activity and don't be surprised if they show up later down the road, but he never promised it will or won't happen, just that we'll cross that bridge if we have to.

So, we go home victorious. To God be the GLORY for my baby's health and well-being. And may we never have to sleep with the lights on again!!

This was a test where they flash a strobe light into Sadie's eyes to see if it'll induce a seizure.

Cozied up with my babe.

This is Sadie sleeping, you can see the video of her in the background. We were always being watched, it was sort of creepy.

Taking the EEG off was a little easier than putting it on!

Sadie flirting with Dr. Williams (they were saying goodbye)

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