Tuesday, July 13, 2010

Children's Hospital

The Children's Hospital is great. I'm so glad we got her here, I just wish we would have brought her here in the beginning. It's huge and feels so cheery and cozy and clean. They're incredibly accommodating, they give us everything we need, and are constantly offering to get things for us. There's a kitchen right across the hall, with a fridge full of free snacks and drinks, microwave, ice machine, etc. which we can use at any time. There's a lobby with a playroom with tons of activities for kids of all ages. We always see parents walking around the halls with their sick kids, the staff encourages us to get Joon up out of bed and do things with her. Each floor has a lactation room, which has a really nice pump, and they gave me a set of pump parts to use with the pump. And they have a daycare for siblings, which is free, so I would be able to pump some milk with Penny and take her to the daycare so I can have some time to work with Joon without distractions, and if Penny needs me, I'm just two minutes away.

The people here seem really knowledgeable. Everyone has been asking tons of questions and paying attention to what we say. They actually examine Joon, instead of just briefly looking over a few things. They observe her, and seem to communicate with each other about what's going on. Instead of just having one doctor on call, we always have an attending, a resident, an intern, and a medical student. We have an entire team of neurologists working on our case. It's awesome. We've told her entire case history to about a million people so far. They actually do rounds the way you see on shows like Scrubs. And when the nurses change shifts, the nurse that's leaving and the new nurse come into our room, and the old nurses briefs the new nurse on what's happening, while we're there, so we can make sure the new nurse knows everything.

When we arrived yesterday, a med student took her case history, and asked a bunch of questions. Then we met a lot of other doctors. They talked to us about what the plan was at that point, basically that they would all get together and go over her records and the info we gave them, discuss everything, and come up with a game plan. They took some blood for lab work, and said they'd most likely be doing another MRI and spinal tap.

This morning, after the doctors had a chance to discuss everything, they took some more blood to test for some more unusual things. Then we took Joon down to radiology, and she had a more in-depth MRI, to look at some things that weren't checked before. That came back normal. But they told us they looked at the MRI ordered by Evans hospital, and there were some spots on it. The bad doctor at Evans had said that that MRI was normal. We don't know yet what those spots mean, but they're doing more testing to find out.

At some point the entire neurology team came in. I was laying there nursing her, and suddenly five or six neurologists surrounded us and started testing all her reflexes, looking in her eyes, measuring her head, asking weird questions. They said they're going to be spending a lot of time thinking about her case, and test for lots of really rare things, and should be able to figure out what's wrong within a couple of days, and even if they don't they'd like to start treatment soon.

We were visited by a physical therapist and an occupational therapist. They worked with Joon, trying to get her to do different things to show them how all her parts were working. They tried to get her to eat and drink, but she wasn't in the mood. They used her Ariel doll, having Ariel do things they wanted Joon to do. They brought in a little wheelchair and got her into it, and when they left, they left the chair with us so we can walk her around. They said they'd be coming back on a regular basis to work with her.

While Joon was still in the chair, I got some Oreos, and offered her one. I held my hand out flat with the cookie laying on my palm, and she swiped at it and was able to grab it and get it to her mouth. This is the first that she was able to feed herself, before this we've had to put food into her mouth. When she bit the oreo, she wasn't able to keep holding onto the rest of it, she just let it fall. She ended up eating almost two oreos, and I filmed some of it and uploaded the video.

We went for a walk, and took Joon all around this floor. She looked out the big windows and checked out the trees and cars and whatnot. We went to the playroom, and the woman there picked out a few toys and tried to get Joon to play with them, but she wasn't interested.

When we came back to the room, the speech therapist came in. She brought a shape sorting toy, and she and Joon played with it together. Joon was definitely still able to match up the colors and shapes, but she had a lot of trouble getting the pieces to the holes. She was just banging the pieces against the top, not really getting near the right hole most of the time. The therapist asked a lot of questions and did a did a bunch of stuff with Joon, and she said she's going to be working with her every day. She said a lot of Joon's crying is due to her frustration with being completely unable to communicate. She used to talk non-stop, and would tell stories that went on for more than ten minutes. And now she can't say a single word. She said that because it's easier for Joon to control her gross movements than the finer movements required for speech, she's going to bring some machine that Joon can use to talk for her.

Joon is hooked up to a bunch of electrodes right now. They're doing an EEG test overnight, so she's sleeping with 27 electrodes attached to her head. It's pretty scary, I keep looking at the screen and she's having a ton of "spikes" (1-3 each minute) and a lot of "events" too. Someone on the internets said these are actually seizures with no outwards signs of seizure. But I'm going to stop listening to Dr. Google, and not worry about it until we talk to a real doctor about it in the morning. This is going to be a rough night, Joon just woke up and took off the gauze that was wrapped aroung her head, and keeps trying to pull the electrodes off.

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