St. Patrick's Sunday and MRI Monday

Two more days down at what Lyla calls "this hotel". Yesterday was an exciting day for us because Lyla had periods during which she was very much herself. She woke up chatty and was in a good mood most of the day. We even worked on walking and played in the playroom together. It was nice to get out of the room without the pump or oximeter. We saw lots of people in green and the nurses gave Lyla a shamrock for her cheek.

After a nice nap, Lyla and I had a good afternoon together coloring and watching TV. It was nice to relax and have a lazy sunday. Until about 630 when she started a manic phase and couldn't calm down until after 10:30. I would get her to sleep only to have her wake a half hour later and be chatty again. I got her to sleep around nine and took my time in the shower down the hall while Masud stayed with Lyla. Of course, she was awake when I came back.

She finally settled in for the night around 1030 and slept pretty well until 1 or so when she got up with a dirty diaper and then wanted me to sleep with her. It was cozy, but worked well. After Masud left I got back on the parent bed and had a little time to pick up the room while Lyla slept in until almost 9 am.

I hoped the extra sleep would mean she would have on other good day today, but it was pretty quiet most of the day. She was Npo this morning so there was no breakfast for either of us. We weren't sure why she seemed quieter than yesterday and decided to have the MRI to rule out any changes in her cerebellum that might be causing changes in her motor function (better) and her language (ok at times, but often crazy).

Everything looks fine on the MRI. Of all things, it showed Lyla apparently has sinusitis. Really??? A sinus infection??? This is crazy! At least I won bingo while she was in the MRI machine!

Dr. Einzig the psychiatrist came in tonight and finally saw Lyla in person. He seemed to like her and laughed at some of her funny mannerisms. It was in the 630 hour again tonight that she got a little manic, so he got to see her behavior for himself. He seemed very nice and listened to me and also mom and dad. He said that the odds Lyla has schizophrenia or bipolar or some of the other more scary psychotic diseases is extremely small. He thinks it is a combination of her living at a low level of oxygen saturation for a long period of time combined with the decadron steroid psychosis and her time in the picu. While it's not long term, he said she will need to be here as long as she's having the symptoms she's currently displaying. He also said to expect a two steps forward, one step back progression.

I addition to creating a consistent day and night atmosphere to help her get back on track and get some good sleep, he increased her dose of risperdal and added another tablet of melatonin. I expressed concern about her being on risperdal for a long time and he said she will most likely only need it for a couple weeks while she is recovering. He told me to think of it as a dopamine inhibitor, not like an anti-psychotic since we're not giving it to Lyla to keep cure schizophrenia, we're just using it for its dopamine blocking properties. He's the second specialist to ask what I do for a living. Apparently her was impressed by my questions, observations and descriptions of Lyla's behavior. When I told him I make brochures for a living, he told me I should be a behaviorist. That would probably take a lot of school, but I do like when the doctors recognize that I know what the heck I'm talking about and that their time educating me is worth it.

I other news, we colored and made a glittery snowflake in the playroom with Tom today. Lyla did all the glue and glitter. Tom offered to let her feed the fish, but she wasn't interested. Afternoon activity was wood fun. I painted some giraffes and Lyla painted a cat. I had a good laugh making the giraffes talk to each other ... maybe I'm getting a little psychosis of my own!

Aunt Emily came today. She and I have been mistaken for sisters twice in two days. "You can sure tell you're related," people say. And then we explain that we're sisters in law and both named Emily and they look at us like ... Well, you still look like sisters. Crazy! Ryan stopped by today too so we had a bit of a busy room, but Lyla did great. She got her IJ taken out of her neck so she's finally tube and IV free. It must feel good not to have that huge dressing and IV ports swinging from her neck anymore.

Not much planned for tomorrow other than whatever's going on in the playroom. Lyla is also getting OT and PT, so with that and a few walks, we should be able to keep her out of her room most of the day like Dr. Einzig suggested. Dr. Petronio stopped in tonight and said he will check in tomorrow to talk more. Good to see a familiar face here in our home away from home. If we have to ride out this psychosis, at least we can do it as a family.

Thanks to uncle Matt for dinner tonight!

Pics: out our frosty window, Lyla helping out with her neb, coloring as a family in the playroom, Lyla is loving the coloring, Grandpa's girl!, making me a delicious dinner on her own two feet, coloring on the couch (did I mention she loves coloring?), the giraffes I made today standing in coffee beans I set out to help deodorize our room.