Thursday, May 28, 2009

Mommy... I don't feel good.

I hadn't been feeling good all weekend. My nurse called the pulmo on Monday and he wanted my pediatrician to rule out some things before they got involved so my nurse called the pediatrician first thing Tuesday. We headed there and they did some blood work and took a urine sample (I hate both of those procedures!) and they came to the conclusion that I have another UTI. They put me on an antibiotic.

I still wasn't feeling good yesterday morning. It was very obvious because I wasn't moving around much and had the half eyed "Make it better!" look. Plus I was still running up and down fevers and my pulse was a bit higher than it should be, especially for being so still. So my nurse called the pulmo again and told them what my pediatrician had found and what was still going on. He gave her a couple things to do (one she had already done just before she called) and said that if I wasn't starting to get better in an hour to call back and he would probably be sending us to the ER. Well, that is where we ended up. None of us ever like going there because it's always a long, drawn out event.

I coughed up some huge green chunks while they were doing the pre-visit paperwork. I tend to be stingy with coughs so that was good. After they got us into a room I managed to fall asleep pretty quickly. Mommy says that about five or six people worked on getting an IV in me. I slept though the first three attempts. After that I was awake but because I didn't feel good I really didn't fight them that much. They used a machine that Mommy and my nurse thought was really cool. It's called a Vein Viewer. It shines a green rectangle of light on a body part and the viens under the skin show up! This is what it looked like on Mommy's arm.
(Gamer Boy came to the hospital with me and he took the picture.)

Even with the Vein Viewer Mommy says that there were at least six or seven sticks in my hands arms and feet but they never did get an IV started.

They also did a chest x-ray but the doctor says that my lungs looked about the same as the x-rays from last August so he wasn't worried about anything there. He consulted with my pulmo and, because there was pseudonymonas in my trach (not uncommon) he changed the antibiotic to one that would hit the UTI and the pseudonymonas. They helped out Mommy and called it in to the pharmacy so she could just pick it up on the way home. She was worried because it was getting close to the pharmacy's closing time. It turned out that they didn't have any in stock but they called another pharmacy to fill it for her and that one was a 24 pharmacy.

So we got to go home and I didn't have to stay! YEA!!!!! Trips to the ER don't ususally end that way here. Mommy is pretty sure that it helped that I have the nursing staff here at home. It was a welcome surprise to get to go home and get in my own bed!

I'm feeling a bit better today. My fever is staying down better and my pulse, although still high at times, isn't what it has been. Something happened to my good thermometer a couple days ago. We tried changing the batteries but it still gives the same error message. :( We have a working one but this is the favorite and works the best so Mommy is going to have to get another one later today.

Sunday, May 24, 2009

Decorated by my doc!

Friday Mom and Dad took me to see one of my docs for Botox. I look thrilled about it, don't I? Believe me, I was.

You can see the little white globs on my cheeks. That is the numbing cream to make the shots hurt less. I had it on my neck too. I had started arching my neck so Mom surprised me by talking to the doc about it so then I ended up getting four shots instead of just two. I knew I was getting the shots in my jaws but because she said something I also got them in the back of my neck. At least I don't have to get those or the ones in my shoulders too often.

Here Daddy is playing with me. I had been swinging my hands up in the air so I guess he was hoping I would hit his hands.

The best part of the trip was that we had a nurse sub and the one filling in is one of my buddies. I'm always glad to see him! (My regular nurse had car trouble on the way to my house and had to call to have them send someone else. And my night nurse was very kind and stayed until the sub could get there.)

I was pretty much over being out and either in my car seat of my wheelchair and my pulse was a bit high so Dad ended up giving me something to calm me down. Then I started running a fever. But I had a good nurse that night and she managed to make me feel better. I've been running one off and on since but seem to be doing ok now.

Sunday, May 10, 2009

Wednesday, May 6, 2009

Guess what today is?!?!?!?!


I turned six years old this morning! Mommy and Daddy and my brother brought surprises in to me this morning! Mommy had given me a Winnie the Pooh birthday balloon yesterday. My brother bought me a HUGE Disney Princess balloon that SINGS!!! REALLY!!! When you tap on the balloon one of the Disney Princesses sings Happy Birthday and she wished that all my birthday wishes come true.

You can see the blanket Mommy made me under the balloon. Then Daddy opened my birthday present. It was wrapped in pink paper and it's a Winnie the Pooh book that talks and has things for me to do. It will be fun for the nurses and me to play with.

Then Mommy brought in cupcakes for the nurses.

I can't have any but my brother was creative enough to make my formula PINK! Now he says the feeding tube blends in with my bed.