Guest blogger: Louisa after her cath

Thank goodness I don't have to do that every day. It felt so foreign and wrong, but the weird thing is it felt familiar and normal at the same time. I'm only 2 years old, so it's kind of hard to sort this out in my brain. But I'll do my best to tell you about my day last Thursday. That place is like an alternate universe. I once heard of this show called the Twilight Zone. Dad says the hospital could host an entire season of that show. This is my hospital. It has such a long name -- C.S. Mott Children's Hospital and Von Voigtlander Women's Hospital. There's no way I could ever say that. I'm only saying 2, and occasionally 3-word sentences. I guess that's why most people just say "Mott". But some people say "Motts" with an "s" and that just reminds me of applesauce.

2 days ago everyone in my family was home. It was a normal day of cereal and school work, peanut butter and jelly sandwiches, some chores, dinner, dance class, soccer and track practice and then bed time. For me, it was a Baby Einstein episode, a Ba-ba, flipping a couple cereal bowls, a bath, trashing my brother's puzzle, banging on an open computer, sneaking into the pantry and downing who knows how many mini Reese's peanut butter cups (I don't really count past 3 yet, so all I know is it was more than 3). It was normal and familiar. Today, they woke me up at 5:45 AM! Mom always says, "never wake a sleeping baby." I wonder why she broke her rule. Then they put me in the car without a Ba-ba. "Ba-ba? Ba-ba?", I protested. Why on earth did mom and dad get to drive through Tim Hortons and I got nothing? They were hiding their food, but I could smell it! Something about the day wasn't right. When you're 2, it's confusing. Soon I'd be back in that place where people do strange things to you, but act like it's completely normal.

We drove through the rain. Dad seemed a little nervous, maybe because it was raining so hard and the semi trucks were going so fast spitting water all over the windshield. He said he was glad he replaced the wiper blades last night and the headlamp bulb. Dad brags to Mom when he fixes something in the car. I think it makes him feel more like a man or something. But I'll bet real car guys would laugh at him for thinking changing a bulb and wiper blades is a "car repair". But it does seem to impress Mom nonetheless. Mom was freaking out again in the car. Dad kept telling her to relax, but it wasn't working. She starts talking fast and loud when she's nervous. She probably needed her coffee or something.


We finally pulled up to that monstrosity of a health system. We always come in from the north and see the adult hospital first. I think it looks like a former Soviet Union hospital would look. It's just a gigantic heap of pale yellow concrete with those big block Ms on the top.
The traffic was stopped for a minute because a helicopter was taking off. That was pretty neat to see. I hope I never have to ride in one of those though. They fly over our house a lot and Dad likes to joke that maybe one day it will land in our front yard to bring me here. That would be crazy. Finally we rounded the bend and I saw my hospital. It looked so much better than the adult one. It has lots of windows and colorful lights inside. It's real curvy too, not like the adult hospital shaped like cinder blocks. Mom said they should've made the parking ramp taller for such a big hospital. We had to go round and round that ramp until someone gave up their spot for us.

We went inside and got our stickers from the nice guys in suits at the desk. They ask the same questions every time. It's nice of them to care about us - whether we've been sick lately and if we've gone on vacation outside the country - but sometimes they say it in a way that seems like they don't really care. They sound a little like robots, but they're still really nice. Mom and Dad went to Florida, but I guess that's not outside the country because they didn't say anything about it. We first stopped at the desk on the 3rd floor and checked in. They called me back to a big room with a tiny chair that seemed pretty high off the ground. Dad put me in that chair and some lady strapped me to it with these tight velcro straps with my arms above my head and I couldn't move at all! I was really scared. Then they all just left me there and stood behind a wall with a window. Mom and Dad were waving and smiling and acting like I should be excited about this, but I wasn't! It was weird and scary! Then I heard a beep and the lady turned my chair sideways, more waving and smiling from Mom and Dad and then another beep and then they finally unstrapped me. I didn't like that. But, it was pretty quick I guess. Next, we rode the elevator up to the 11th floor.

One of the nice nurses met us there and took us back to a room. The doctor came in to talk to Mom and Dad. He made some funny faces at me and said I was cute. That made me feel like I could trust him. Mom and Dad were a little nervous because it wasn't the doctor I usually see. I guess he got sick with the flu or something so they sent this guy instead. I didn't know doctors could get sick too. The nice doctor had Dad sign a paper. He was saying things like "perforation, cardiac arrest, bleeding, stroke, death". Those sounded like bad things, but maybe Dad had to sign that paper to say he didn't want any of those things to happen to me. Anyway, the doctor said they use really flexible instruments in my blood vessels so that stuff usually doesn't happen. Usually?

                                         

Then we walked to another room and they checked my oxygen level and then I had visits from some of my favorite nurses. Mom squeezed some weird red medicine into my mouth. It wasn't long before I started to feel really strange. I felt kind of warm and dizzy and things started to seem kind of fuzzy. Maybe mom should take some of that medicine! It sure made me feel pretty relaxed. And that's what Dad always says to her, "relax". Yeah, she should definitely get some of that stuff. Then Mom and Dad said goodbye to me. They seemed kind of nervous, but my favorite nurse was there and she kept them pretty distracted. I think God sent my nice nurse to come and talk to them so they wouldn't freak out. That was a good idea. Then that weird guy and the lady with a funny paper hat wheeled me away from Mom and Dad. That guy put this mask over my mouth and nose. I was scared for about 3 seconds, but then, I fell asleep.

The next thing I knew I was waking up in another room. There were wires all over me again. And I felt so tired. My eyes were heavy like my lids were filled with sand and I couldn't focus my eyes. There was that light taped to my finger and an IV in my hand and my throat was sore. I was trying to call for Mom and Dad but my throat was so scratchy.
It was such a relief when they came in. They seemed really glad to see me. But, all I could think about was my Ba-ba. I wanted it so bad. The nurse said I needed to be careful because of the anesthesia and not drink too much too fast or I might puke. But that cold milk felt so good on my throat. I chugged half of it down right away and then Dad yanked it out of my mouth. I guess he wanted me to obey the nurse, but I was mad and I started to go crazy and tried to climb out of my crib. I must have been holding my breath because my sats started dropping into the 50s and the nurse came running in. They stuck that oxygen mask in my face and calmed me down. I guess I was ok, but Mom got scared at how gray I turned. The nurses said not to worry, it was just the anesthesia. Mom did her nervous half-laugh and said, "So, this isn't going to happen again tonight at home, right?"

                                        

I calmed down and took a long nap. I felt a lot better when I woke up and they let me eat some food. I had to lay down for 4 hours after my cath. Mom thought that would be hard for me, but I felt so crazy, it was nice to just lay there. Finally, they said I could go home. I slept the whole way. But while I slept, I could hear Mom and Dad talking about my cath. They were saying how glad they were that things went smoothly. They talked about how the Lord answered their prayers and that so many other people were praying for me too.

Dad was talking about how awful it felt when the lady said the doctor wanted to meet with them and showed them to a consultation room. Dad was remembering how many times they waited in consultation rooms for bad news. There was the consultation room at Sparrow after their first ultrasound, and the consultation room during the first visit to Mott when Mom was still pregnant and they talked about all the things that would happen to me. And the consultation room they waited in when I arrested after my first surgery. Dad thinks they should call them "bad news rooms". So, they waited for what felt like 6 hours. Dad said he just kept wondering if maybe they would come in with more bad news, or even the worst news. He wondered if he'd given me my last kiss when he said goodbye to me before my cath. He remembered his first kiss right after I was born. He said to Mom, "At least they haven't sent a social worker...yet." Finally, he saw the doctor's face coming toward the door and he knew by the bright look in his eyes that things were ok. He told them about my pressures in my ventricle and in my pulmonary arteries. He thinks it was 12 in the arteries and 7 in the ventricle and that that gradient was perfect for moving ahead with the Fontan surgery. I guess I had this big mess of collateral blood vessels coming off my right internal mammary artery.
The doctor said that wasn't going to be good for me so he put a big plug in it (even though it seems like usually plugged arteries are a bad thing. But, this guy did seem to know what he was doing). He showed Mom and Dad the pictures. It looked pretty impressive. I guess I won't have a RIMA for the rest of my life. Oh well, I don't have a left ventricle either.


So, it was kind of a crazy day for me. For all those nice people at Mott, it was just a usual day. They'll do the same things to some other kids tomorrow. They'll stick IVs in them and run catheters in their arteries and veins, and strap them to walls to get xrays. To them, it's normal. To me, it feels a little strange. But, I agree with Dad, the strangeness has almost become a comfort. I guess the more we do here, the more it feels normal. Come to think of it, this crazy stuff is all I've ever known. I guess it is actually normal for me. I don't know if it will ever be "normal" to Mom and Dad. Mom still shakes sometimes and Dad said he's pretty sure there will be more consultation rooms in their future with me. At Mott they're always saying things like, "Thank you Jesus" and "Please Lord". I guess Mott has taught them a lot about God. That seems good. Hopefully I'll learn a lot about God too. It seems like maybe that's the whole point of this. At least that's what Dad says. So, I guess I should look forward to the Fontan - it's supposed to happen pretty soon!

On the left is the before picture of some collaterals. On the right is after placing a plug and a coil.

On the left is a nice picture of the aortic arch. On the right is the extensive collaterals to the lung off the RIMA.

The hemi-Fontan circuit and pulmonary arteries.