Monday, June 11, 2007

It's 10:30 p.m. on Monday, and Dad is lying on the bed next to me in the hospital. He was just watching my heart rate skip all over the place, but it was really hanging up there in the "high" range (140-155), which is totally abnormal when I'm asleep. He took my temperature - normal. I was asleep, so I didn't seem to be in pain. But wait - Aha! He took off my "nose" (the Thermovent at the end of my trach tube), and my heart rate went down and my oxygen saturation went up almost immediately. Not sure why that happened tonight, but I'm glad Dad was paying attention and right on top of the situation. He always seems to know how to help me.

Mom was here yesterday evening when she and Dad swapped places. She spent the night with me last night, and I was pretty good for her. I didn't have any de-sat events, and I slept pretty well until 4 a.m. I was really gloppy all night, but it didn't bother me at all. Mom got up several times to suction me, and she watched me breathe most of the night. Of course the nurse was in here every hour on the hour to check on me, too. They take very good care of me here.

Today was an extremely busy day. After my sponge bath (did I mention that I really miss my shower chair at home? I do - I really do), the neurology team stopped by. There was a whole troop of neurologists wandering around. They were very interested in getting an EEG on me, so that was set up. I've had several EEGs in the past, and they're not the most fun - mostly because they draw on my head with a red marker, then they put all this thick, gooey stuff in my hair, then they attach electrodes all over my head. These have long wires attached to them. They aim a camera at me and record everything. They wanted to have a reading of what my brain does right before, during and after one of my gasping episodes. Guess what. They had it hooked up for two and a half hours, and I didn't have a single episode. They were going to leave it on me all day, but I had to leave the room for another test, so they had to take everything off. Right after they disconnected me and left the room, well, that's when I had a gasping episode. Leave it to me!!!

Mom's friend Dana came to the hospital to visit, so she got to go over to St. Louis University Hospital with us (Mom and two nurses). That's where I went for a barium study showing how my stomach empties into my intestines. I was on a transport bed. The nurse put three ounces of formula and barium mixture into my stomach, then the technician put me under a big machine. He lowered it to right above my tummy and face and I had to stare at it for an hour and a half while the machine took pictures of my tummy every two minutes. From what Mom, Dana and the nurses saw, not a single bit of the formula had moved into the intestines after all that time, so I definitely have a motility issue. We're hoping that the change in formula and a smaller amount per feeding will help with that. It's trial and error with me, of course, so if that doesn't work, we'll move to the next step. I'm also on a new antacid to reduce the acid that touches my skin should I "spring a leak" again at my feeding button site.

When we got back to my room, the pulmonologist was ready to do a bronchoscopy. He ran a camera down my trachea to check things out. I cried a bit, so he could really see what happens when I'm "fussy." On the screen we could see that my trachea and bronchi are a bit compressed, especially when I'm crying. With all the secretions down there, it gets pretty squeezed. The doctor said that using the ambu-bag to help me breathe gives me just the right amount of pressure to open up those compressed areas to let the oxygen get to my lungs. He's still working out some theories on what to do. We don't know if something happens in my body that makes me aware of an upcoming breathing problem, which makes me cry OR if I start crying (for whatever reason) and that makes me gasp sometimes OR if allergies thicken my secretions to cause the gasping OR if there's a neurological trigger that kicks the episodes into gear. It's quite they mystery and everybody seems to be scratching heads and looking confused.

Mom had the doctor draw some pictures so she could explain his initial theories to Dad when he arrived tonight.

So right now I'm sleeping, and I'm waiting for tomorrow morning when they hook up the EEG again. More goo in my hair. (Dad will have a fun time trying to wash it out!!! It's a good thing Mom brought my detangler with her.) Maybe that test will show something important?

I guess I'll just hang out until somebody tells me I'm going home - which is really where I want to be. I miss my house and my dog, Thor. I want to sleep in my own bed and have a real shower with the spraying water, not the boring old bed baths. I want to see my teacher and therapists again, and I want to play with my nurses.

Speaking of my therapists...Mom saw Sherri and the baby boys yesterday on her way to be with me. She said Sherri is doing MUCH better and the twins (Grant and Cullen) are doing very well. She got to touch Grant's foot. She said the babies are very small, but not as small as she thought they would be - plus their skin looked really good. She thought it would be paper thin. They were in pretty good shape for being so early. They will be in the hospital for a long time. I know they'll be glad when they get to go home to their family and their own beds for the first time.

I want to be out of the hospital as soon as possible because Grandma's birthday is this Friday and Father's Day is Sunday. I dont' want to be up here for those two celebrations! Grandpa is going to Los Angeles to see my uncles (Kevin and Brad) and aunt (Janet). Uncle Scott is in Chicago this summer working on Batman. Mom and Ian are supposed to visit him for a couple of days in July. It's an exciting summer, and I want to be part of it. Please pray that I get to go home very soon. Thank you!!!