Tuesday, July 24, 2007

My Dad has this weird saying. He says, "And the hits just keep on coming!" I don't think he's talking about number one songs on the radio, either. Whenever he says it, he and Mom look at each other with a look in their eyes that I can't explain, but it sure seems like some of it revolves around me.

Why am I talking about "hits" today? Well, today was a terrifying, horrible, mysterious, miraculous day. Yes, it really was all of these things, and in order to share it with you, I'm going to get a bit graphic. So if you're feeling a bit weak in the stomach or you really don't want to hear about "bad stuff," I suggest skipping this update and catching me on the next one. Mom says it's good therapy, though, to get everything off my chest, so I'm going to tell you straight out what happened to me today.

At 4 o'clock this morning, I started getting kind of gurgly, like I do many times while I'm sleeping. Nurse Diane got up to suction me, and when she had the suction tube all ready, I coughed as she was pulling my Thermovent (the filter at the end of my trach tube) off. I coughed up bright red blood, and it filled up the filter. The nurse started suctioning me, but she couldn't get the blood out fast enough, and she had no idea where it was coming from. She got the next-size-up catheter kit and called Mom on the intercom. Mom teleported into the bedroom, and when she got in the room, she was very confused. She said, "What's going on?! Why is she bleeding?!" The nurse was suctioning me and threw the phone to Mom and said, "Call 9-1-1! It's not stopping!" So she did immediately.

Mom said that I looked like a gunshot victim - there was so much blood all over my chest, soaked through my nightgown. The suction tube was full of blood. The suction canister was filling up with blood. There were blood splats on my blanket, my stuffed animal friends who sleep with me, the wall, and everywhere - and it just kept coming out. Mom was terrified that I was "bleeding out." (The doctors told Mom and Dad that because my anatomy is so weird, that my inominate artery (did I spell that correctly?) - anyway, it's a very important artery - crosses my trachea right below the trach tube. That rigid tube could at some point wear down the lining between the trach and the artery, and then...well, let's just say that it would be bad, very bad.) Mom said that's what was flashing in her mind. Luckily, I was asleep during all of this, so I didn't have that panic-stricken look on my face that makes Mom even more worried. Mom kept 9-1-1 on the phone and used the nurse's cell phone to call Grandma and Grandpa. She told Grandpa she needed them NOW! They must have teleported, too, because they got here very fast. She also called Dad at his hotel in New Jersey.

The nurse moved me to the other bed so that she and Mom could both work on me at the same time. Then she deflated my "cuff" that helps seal off the rest of the space around my trach tube. Within 15 seconds, the bleeding stopped and the blood started clotting. Mom got the oxygen and the ambu bag, and the nurse started bagging me. The ambulance and fire department arrived, and that's when I woke up. Unfortunately, so did Ian. Mom told him to go with Grandma and Grandpa. I don't think he saw all the blood because he was half asleep, so that's very good. I would have scared him a lot!

Mom rode in the ambulance with me to the hospital here in Farmington, and she asked for a transport to Cardinal Glennon immediately. The nurse kept bagging me while Mom did all the paperwork stuff, and after a while, it got harder and harder to bag me. The nurse said she thought my trach tube was clogged up with dried blood and that we needed to change the trach tube. Mom got nervous about that because she was afraid that if we got the old one out, I would start with the weird spasms or start bleeding again, and we wouldn't be able to get the new one in. Then I would be in a bigger mess.

When they pulled the old one out, there was a long string of thick, gooey blood hanging on the end of it, and the tube itself was completely filled with dried blood. I'm really not sure how I was able to get any air into my lungs! But the new one was clear, clear, clear, and I could tell right away that I was breathing better. Mom had to run hot water through the old tube and rub it between her fingers to break up the clots. (Don't worry - she always sterilizes the old one again before it trades places.)

The ARCH helicopter couldn't fly to Farmington because it was too foggy in St. Louis. That meant that the transport team from the hospital couldn't come. So they called Air Evac to see if they could fly. They arrived at the hospital a little while later, and I got to take my third helicopter trip to St. Louis. This time, though, I was awake for the ride. The other two times, I was unconscious.

The Air Evac helicopters are very small, so Mom couldn't fly with me. She and Grandma drove to St. Louis and got there about 15 minutes after I did. (I think Grandma was driving way too fast, but Mom said she would pay for her ticket if she would just put on her hazard lights and floor it!) It was rush-hour traffic, but somehow they made it pretty darn quickly.

I was hanging out in the emergency room when they arrived. I was on a humidified trach collar and oxygen, but other than that, I was back to my "normal self." Mom was amazed. Grandma was amazed. I was amazed. I got a chest x-ray and the ENT team came to scope my airway. They tried to find anything that could have caused the bleeding. The only thing they found was a tiny spot at the top of my trachea near the stoma (the hole in my throat). They said that that could have been where a granuloma (again, the spelling might not be right here), broke off and broke a blood vessel. That could have caused all the bleeding, but at that time, there was not a single bit of blood anywhere in my throat! It was a miracle. Seriously.

Grandpa was already canceling patients for the day because he thought he would be needed in St. Louis, but Mom told him to stop - he could stay at work and fix teeth because I was doing so well, it was unbelievable. He should just stay in Farmington. (Ian went to his friend's house for the day.)

My chest x-ray showed that part of my left lobe either had partially collapsed OR it had some pneuomonia in it (which could have been some of the blood that didn't get suctioned out at the house). But I didn't have any fever. My blood count was good. My blood gas was good. I was not upset. I was breathing well. They weaned me down to room air, and I was still doing well. So, I was going to get to go home!

Since I was doing so well, Mom called the orthotist (Barb) to see if she was in the hospital today and if she happened to have my new leg braces with her. Guess what. She was and she did, so she came to see me. I got to try on my new "legs." They're pink (of course) and they have "girls with attitude" all over them. No, they don't say that all over them - there are pictures of girls on the braces. They're GREAT! I picked them out myself when I was in the hospital back in June. Barb is going to make a few adjustments to them, and we'll pick them up on Friday when I go back up for my other appointments.

Dad made it to the hospital right before Grandma got back with the van and all the stuff I need when I go on a trip. So I was ready to leave. I got home this evening, and other than being very tired, I was (and am) feeling pretty good. If you walked into my house right now (8:26 p.m.), you would see me looking like I always do and you wouldn't know I had coughed up 100 cc (almost a half pint) of blood just 16 hours ago.

I'll be the first to admit it. I'm a weirdo. I have these weird, mysterious things that happen all the time. Jesus just keeps reaching down and grabbing me and saying, "Not yet, little one. Not yet. You stay there for now. You still have a lot to teach people." So I do what he says, and I snap back into life - with all the gusto I can muster. And each time something weird happens to me, I truly believe I come out of it more lovable and snuggable than before! Just ask Mom and Dad!

So please keep praying those prayers for me. I know God is listening. I can hear Him, and I can hear all the angels flying around me, too.

It's been a long, hard day, so I'm going to go to bed now. Nurse Diane is back. (Wow! I didn't scare her off! I'm so glad!) She's going to get me all ready for bed, with fresh, clean pajamas. Love to you all!