Saturday, June 9, 2007

It's 5:40 p.m. on Saturday, and guess where I am. I'm lying in my bed at the Cardinal Glennon Resort and Spa (AKA Cardinal Glennon Children's Medical Center), where I like to check in at least once a year for an extended stay to get "pampered" (AKA checked out from head to toe). Right now Grandma is reading books to me, brushing my hair and telling me silly stories.

I bet you're thinking, "Hospital? Why is Emma back in the hospital? I thought everything was going pretty well. What's going on with that crazy girl?"

Well, that's a good question. Once more, I have become a mystery to many. Everything WAS going pretty well other than my tummy issues, and then on Wednesday, the winds of change blew in. Nurse Sandy was taking care of me, and for some reason, my body decided it was time to have a gasping episode - pretty darn similar to the ones of the past (for those of you who have kept up with my medical history). She ended up using the ambu-bag on me (the thing with the big squeezy balloon on it that pushes air into my lungs). She pumped air into my trach tube and hooked up the oxygen to get some O2 in my body. My O2 saturation had dropped a lot. She got me sorted out and hooked me up to my oxygen monitor. I went back to 95% and was looking good. She talked to Mom (who was in Hannibal on a Horizons Club trip). They talked about what happened, and Mom thought maybe I had a mucus plug blocking my airway. Since I was doing well, everybody seemed to be pretty happy and calm.

Then came Thursday morning. Nurse Caroline was here taking care of me and Grandma was here taking care of Ian (Dad was still in New Jersey and Mom was still on her Horizons Club trip). I had a very bad gasping episode, and Caroline and Grandma ended up calling the ambulance. By the time the EMT got to me, I was starting to "pink up" again and I was doing pretty well - back to good, strong O2 readings and looking and acting myself. So the EMT talked to Mom on the phone and they decided not to take me for an ambulance ride. Instead, they were going to have Grandma and Nurse Sandy take me to CGCMC in St. Louis later in the morning. Something was wrong and I needed to see one of my doctors in St. Louis.

Grandpa drove to Hannibal to pick up Mom, Dad caught the first plane out of Jersey, and all of us ended up at the hospital within about an hour of each other. I had some chest x-rays and bloodwork, then the doctor came in and said, "Has Emma lost any teeth lately?" Mom told him I hadn't lost a tooth for a couple of months. He said it looked like there was a tooth stuck in my esophagus, so Grandpa went to look at the x-ray. Sure enough! There was a tooth stuck in my throat!!! He looked at my mouth and said that it had come out within the last few days, so I guess I had worked a tooth loose during my sleep and swallowed it while I was asleep one night this week. I don't bleed much when I lose a tooth, so I guess nobody even noticed because my permanent tooth was already popping through. Weird, huh?

Everyone was thinking, "Hooray! We know what's causing the problem! Let's get the tooth out and everything will be fine!"

But you know me!!! I had to make it a little more difficult than that. First they did a CT scan to confirm the position of the tooth. It really was in the esophagus and not in the trachea. It MIGHT have something to do with the breathing issues, but it might NOT.

On Friday I had about seven gasping episodes before the procedure. Yesterday afternoon I went to the OR where the ENT doctor used a scope to go down my throat and grab that tooth. It was lodged in my throat and had caused just a little sore, but nothing big. It just wasn't going to move on its own since I don't swallow anything but my own spit. It was defininitely NOT the reason for my gasping, though. It wasn't anywhere close to the bronchi. (SIDENOTE: When they were going into my mouth with the scope, they saw another loose tooth and got it out while they were in there. Mom had just checked my teeth the day before and there wasn't a loose tooth, so I had really loosened one up quickly! I left the OR with a special purple pouch from the tooth fairy. It had $3 and a bunch of princess stickers in it!) Mom said that wasn't enough to pay the deductible and co-pay, but it was a start!

Since Mom stayed at the hospital with me on Thursday night, Friday night was Dad's turn. I had a bad gasping episode Friday night and really scared my nurse. She was a new nurse and I completely freaked her out. (I'm not in the "heavy-duty care" section this time - I've usually been in the Intensive Care or Transitional Care Units, but this time I'm just in the "regular care" section - I think this nurse wasn't used to seeing a "Code Blue.") Dad helped get me out of it and took good care of me, along with the roomful of nurses and doctors who joined the party.

This morning I had several more gasping episodes before Mom got back to the hospital. Again, Dad took great care of me. He even cleaned me up and fixed my hair for me. He's such a good daddy!

So now the pressing question is, why am I doing this again?

The ENT said that my trach tube is perfectly positioned to keep my airway open. It is still holding that "smashed" area open at the bottom of my trachea. The tube goes all the way to the corina, where the bronchial tubes split out into the lungs. So structurally and mechanically, things should work.

Dad is exploring the allergy connection because my gasping episodes always start up in late spring/early summer. Could there be a connection? It's possible. Very possible. However, my gasping episodes start with crying and then turn into a production - in living color (BLUE - not my best color). If someone can distract me out of the crying spell, though, then I don't go into a full-blown gasping episode. Can you distract an allergy attack? So I got to meet an allergist today, and she is ordering a blood test that will show the Midwest panel of allergens. It will take a couple of weeks to get the results back, though. I hope I don't have to stay in the hospital that whole time! Yikes!

Mom says maybe it's neurological. Maybe my brain is just misfiring and causing some kind of freaky hiccup in my system shutting down my breathing mechanism. I guess that's possible. Could that be something that can be distracted?

Dad said that maybe the tooth getting lodged in my throat triggered some kind of reaction that made me remember the gasping episodes of the past, and it threw me into an anxiety attack that scared me, made me cry, and the panic overwhelmed me and caused me to gasp for breath.

I don't know what's going on, to tell you the truth. I wish I did. But if I did know, I'd have to figure out a way to tell somebody what I think it is. Sometimes Mom and Dad just don't know what I'm thinking or what I'm trying to say. It's frustrating (but it can be funny, too, because they start making up things and telling me what I'm thinking, and it is SO WRONG sometimes. I let them go with it, though, because it entertains me).

I also got to see the GI doctor today while Mom was here with me. She was a very nice doctor, and she is trying to figure out why I'm having these leaking problems with the stomach acid burning my skin. We're going to try another formula change to help move things through my stomach faster, and we'll probably start an antacid to reduce the acid leaking out. Those are steps one and two. There are several more to try, but they get riskier, so we'll see how these work first.

So that's where things are with me. I'm haning out at the hospital until they figure out what's wrong OR until Mom and Dad decide to take me home. I just don't want to have these gasping episodes at home because I scare everybody so badly (including me). We don't have an endless supply of oxygen at my house being pumped through the walls.

Please pray that somebody somewhere figures out what the problem is!

Now, on a sidenote. My very good friend Sherri (who is also my Occupational Therapist) went into premature labor on Wednesday, the same day I started with my problems. I was so worried about her. She was only 26 weeks along, and she had two babies in there. (Mom talked to her Thursday morning and told her that her babies were just so excited about coming out to meet their mommy, they were going to come out early!) Her doctors were able to keep the babies in there for a few more days, but today they came out! Sherri and Perry now have two tiny little baby boys. One was 2-5 and the other 2-4. Both had full heads of hair and they are not on ventillators. Isn't that wonderful?! Thank you, God, for watching over them. Please pray for the babies to be healthy and strong, pray for Sherri to recover from the taxing ordeal, and please fray for Perry to be strong for his family. I can't wait to hear what they name the babies, and I really can't wait to meet them! I bet they'll get to sit on my lap someday!

NOTE ON SUNDAY, JUNE 10: Here's a quick update for Sunday. The team of doctors came in this morning. They are going to have the barium study scheduled for Monday. They have also requested a neurology consult, so hopefully my neurologist is on call today. My pulmonologist was here today and he said, "Well, if anyone can do anything differently than anyone else, it's our mystery girl Emma." He is very worried about me and wants to figure this out. Maybe my bronchial tubes are collapsing? Who knows? The pulmonologist said that ENT had asked for a sleep study, but he's not sure that's the right test since 99.9% of these episodes are when I'm awake. So maybe there's another test? (That's why Mom wanted neurology to come look at me.) I started on my new formula today, and an antacid. My tummy looks a lot better - simply because I've been on IV fluids for several days and there really hasn't been much to fill up my tummy and leak out! But my skin feels better.

Grandma stayed with me last night so that Mom and Dad could go to Ian's baseball game. Ian got THREE HOMERUNS! He said one of them was especially for me. The other two were for his team. He's on the Marlins. They beat the Mets 33-2! Wow! I wish I could have seen it.

That's the update for today. Dad and Ian are on their way up to the hospital, and Mom will be here later today to spend the night with me. She is going to work for a while and then she is going to see Sherri and the babies at the other hospital. Mom and Dad said you could call them if you want to talk to them. You can also call my room and talk to me! (Just try to call between 8 a.m. and 8 p.m.)