Tuesday, June 12, 2007

It's 9:35 p.m. on Tuesday.

I've been moved to the Intensive Care Unit. Gee whiz!!! Now what??? They hooked me up to a CPAP machine as of about 8 p.m. - it keeps positive air pressure continuously pumping into my lungs, so all my airways HAVE to stay open. It's really a weird feeling, and since there's so much air pressure, some of the air escapes around my trach tube and comes out through my vocal cords. It sounds like I'm moaning. I can't really stop the sounds, but that's okay. I think it's funny. It makes me smile because I can hear my voice - sort of. (They probably won't keep this on me for a long time - they might even take it off me very soon to "test" me to see if I'm breathing okay.)

So, you may be asking, "What happened this time?" Well, here's the thing - Mom and Dad had talked to several doctors today about taking me home tomorrow. Everybody was gearing up for the big discharge. I did a four-hour EEG this morning (and pretty much, seizures and neurological problems were ruled out), and late this afternoon, the sleep lab tech came to hook me up to monitor my breathing to see if I had a central respiratory problem (which means I stop breathing because my body isn't trying to breathe) OR if I had an obstructive problem (which means that I keep trying to breathe, but something is blocking my airway). Dad said he could have told them that it was obstructive without the test, but that's okay. Now we'll have a real scientific report telling us the same thing.

So, things were going relatively smoothly. Dad and the nurses knew the drill - as soon as I started crying, they were to watch to see if I started gasping. If that happened, then they were to immediately get the ambu bag and give me a few "puffs" to open the airway and let the good, clean oxygen come into my lungs. Dad stepped out of the room for a few minutes to talk to a friend of his in the Emergency Room, and while he was gone, the respiratory therapist came to give me a breathing treatment. Then I was deep suctioned, and then I went into a full-blown event. I was not able to move air. My oxygen sats dropped quickly and my nurse was in the room within seconds. They bagged me for about 15 minutes, and every time they removed the bag to see if I was breathing on my own, I wasn't. My sats would drop again. I freaked everyone out a LOT this time, so they called in the ICU doctor and told him to take me away. I needed close monitoring after this one, and the ICU can do one-on-one monitoring (but they can't on 2-South).

So now I'm here in the ICU. It's not a comfortable room for Dad. He even has to go out of the unit just to go to the bathroom. My old room was really great - it was big and pretty comfortable. There was a big couch that pulled out to single bed size, so it was a fairly good place for Mom, Dad or Grandma to sleep next to me. There was a bathroom with a shower in the room, so they could even jump in the shower while the nurse was giving me my bath in the morning. There were even big windows, so I could see outside. Now we're back to the ICU where everything is really incovenient - they can't even have their cell phones on back here. Big bummer!

Mom was going to come up tomorrow to help pack me up and get me home. Now she's bringing her stuff with her to spend the night again, and Dad will go back home to be with Ian. It's his turn to hold down the fort at our house and do some work for his job.

I really don't know how long they'll keep me in the hospital now. I guess it's possible I could still get out of here tomorrow, but nobody really thinks that will happen.

I bet you're wondering what Mom and Dad are going to do with me when they get me home. The easiest way to put it is that they're going to be ready, at the drop of a hat, to grab the ambu-bag and start pumping air into me. If they do it right away, when I first start gasping, then I come out of it pretty quickly, (or at least I have to this point).

With my "smashed/floppy/compressed/soft" bronchial tubes, this is pretty much the only choice. There's nothing surgical to keep the airway open. If my body grows in a way that my chest compresses even more, or if my airway softens even more over time, then the problem will worsen, and at some point, well, maybe the ambu-bag won't work. That's the reality of the situation - unless someone can come up with a reasonable way to fix this problem. The bilateral chest expansion surgery that Mom and Dad looked into last year really isn't an option. Besides the fact that nobody wants to do the surgery because I'm too complex, the risks involved are way too high to take the chance.

What I say to you is this - I'm going to live each day being very, very happy because I am loved so much by my family and by so many other people. I'm going to do what I can to help my family and my nurses take care of me. I'm going to let my dog lick my hands and feet whenever he wants to. I'm going to sit next to my big brother and let him read to me. I'm going to snuggle with Dad and Mom in the rocking chair. I'm going to listen to Grandma sing to me and read me books. I'm going to keep learning how to recognize YES and NO. I'm going to swing in my swing and take strolls around the circle at our house. I'm going to do as many things as I possibly can, and I'm going to be happy, happy, happy every day.

Nobody knows what's going to happen tomorrow. I just heard today that my very wonderful teacher for the last four years was in a freak accident over the weekend. A balcony railing gave way and she fell from the balcony, breaking her back at the L1 vertebrae. She is not in great shape right now and will be going into rehab in St. Louis. She is young and a wonderful person. Now she will have all new challenges ahead of her. Her new "normal" will be very different from her "normal" of last week.

My other teacher died suddenly this past spring, without any advance notice at all. She was very young. Nobody saw it coming, and nobody could have changed it. It just happened. It was time.

My new "normal" is very different today than it was before last Wednesday. This may be the same "normal" for many, many years, or things may continue to evolve into a different "normal" over a short period of time. Something drastic could happen tomorrow that would change my "normal" significantly, or it could take tiny little baby steps in a different direction.

Maybe God will snap his fingers and say, "Be healed, Emma Powers!" Now THAT is a miracle Dad and Mom have prayed for for a long, long time.

We really don't know what's going to happen. So, while the mystery unfolds, will you help me enjoy every minute? There are 1,440 minutes in a day, 10,080 minutes in a week and 524,160 minutes in a year. Wow! That's a LOT of minutes. Let's make them count, okay?

Please pray that I get to come home very soon.