No, you aren't watching an episode of House...

The channel didn't change. It's still our life you're watching...

As soon as the doctor at the AMAZING hospital told us that she thought that our son had Kawasaki Disease, everything seemed to start moving faster. Things were actually getting done to help us. It was a dream come true and a nightmare all at the same time.
As soon as the doctor told us what she thought, a sense of urgency filled the air. A nurse came in with another amazing person named Carrie. She was a child life specialist. From what I had gathered, her job was to make children comfortable while they were in the hospital. She did a great job. For Julian's IV, the brought in an Ipad and asked him what he wanted to watch. He was so nervous, because he knew what was about to happen. They told him that his only job was to stay completely still and not to move an inch. He could scream as loud as he wanted. How amazing were they? Even through his show request of Peppa Pig, he cried and screamed and broke my heart. But, at least he was getting treated for what he really had. That's what I kept telling myself.

Miss Carrie asked Julian if he needed anything else and he asked for a balloon. She said she didn't have any baloons and he was devistated, so she drew him one. :)

After this, he needed a chest x-ray. The x-ray was going to show inflammation, if there was any. I was never told anything about the results of the x-ray. I just guessed that there were more important things. There was a sense of urgency when they were caring for Julian that I didn't notice at the time, but now I think back and am so grateful for. Things seemed to be moving so quickly that I hadn't even had a chance yet to look up what Kawasaki Disease was.
I'm sure a lot of the readers of this blog have checked out the links I posted about KD. Kawasaki Disease is an inflammation condition, a type of vasculitis, that affects every vessel and vein in the body. When I think back to the afternoon that we took Julian to the AMAZING hospital, I remember my hand brushing against his leg and him pulling away in pain, like that simple touch hurt his skin. It did. This also explains the horrible redness in his eyes. The teeny little veins in his eyeballs were inflamed also, causing the conjunctivitis. His entire body was inflamed. How painful does that sound?
Along with the inflammation of his veins comes the possible inflammation of his coronary arteries. That was something that would be evaluated later on.
Kawasaki Disease often masks itself as other illnesses, making it difficult to diagnose. There is no blood test to confirm KD. It's purely a clinical diagnosis. If a person has X out of X number of certain traits or symptoms, they probably have Kawasaki Disease.


We were soon notified that Julian would need to be transported via ambulance to Texas Children's Hospital in downtown Houston. Everything was happening so fast that I didn't even have time to be scared or worried...yet. I actually had a calm fall over me, like a wave of relief. It was a feeling that I hadn't felt in days. 
The time had come to load up in the ambulance. Of course, Mama would be the one riding with her baby boy. Daniel is amazing when it comes to those kinds of things. He so often steps aside and let's me take charge without even a word of protest. But, then when I need him, he is right there. He knows me and he trusts me and I love him endlessly for that.

We said our goodbyes and I made a list of things that Daniel would need to bring back to the hospital downtown. He had to take his dad home, who had come with us to the AMAZING hospital. As we loaded up into the back of the ambulance, the driver told me to buckle up, hold on, and to not be nervous. Huh? How urgent was this? I realized that this was really, really bad. We had to be transported via ambulance with the lights and sirens on because of the urgency of Julian's condition. However, I wasn't scared at all when I saw Julian's excitement. He LOVED it and I'm so happy that he has any positive memories from this whole ordeal. On our quick ride to downtown, Julian's fever had dropped. It was to be expected, since he had been given Motrin before we left the hospital. 

Our super cool ambulance ride- We even passed Daddy on the highway!

I've never ridden in an ambulance to the hospital before. We got to sneak in the back door and they asked me all of the same questions that I had been answering for five days. You'd think that my answers would transfer from one hospital to the next. Didn't they know why we were brought in? It really didn't bother me one bit to answer the questions, though. Whatever it took to get Julian better. I told myself that so many times.

We were moved into a small room with space for two patients. The spaces were separated by a curtain. In the hours that we were there, two different patients were in there with us. I can't remember why the first one was there, but then they were discharged and a boy who had an asthma attack was brought in. He was about 10 years old and just wanted to sleep. His parents were freaking out and he just wanted to sleep. A few hours later, they were discharged and he got to go home and go to sleep. 

Doctor's came and talked to us while we were in this tiny room. Julian wanted me to lay with him. I didn't hesitate to squeeze my wide hips into that tiny bed with him. He was so hot and I was sweating, but it didn't even matter. The doctor's said that he was the most textbook, convincing case of KD that they had seen. Well, that's good, I guess. He needed to be started on the treatment for the disease, but the entire hospital was full and he couldn't be moved once the 10-12 hour treatment started. We arrived at about 9:00pm to TCH and we were being told that we may be able to be moved to a room by the next afternoon. Yikes. Lots of sick kids. :(

Because of the severity of Julian's case, they made the call to start the treatment while we were still in the emergency room. That meant that we had to stay in the ER until the treatment was complete. He had to be closely monitored while receiving the treatment to ensure there were no adverse or allergic reactions to the IVIG. That's a long time in an ER, people. We got moved to what they called a "semi-private" room in the ER which had his bed, another tiny bed for one of us, and two chairs. No space to walk and no windows. They kept asking if I wanted the door closed. Um, no. I would have suffocated. Plus, I liked to watch the activity in the halls. If I could make a job out of people watching/ eavesdropping, I totally would. :)

Julian getting his IVIG treatment in our "semi-private" ER room. He looks like an angel. <3

The treatment for KD is a blood product called IVIG and high doses of aspirin to thin out his blood. IVIG stands for intravenous immune globulin. It's basically a blood product made from the blood of 2000 people. So, after the treatment is given, Julian has SUPER IMMUNITIES. I'm just jealous that I can get sick and he can't right now. Because of the treatment, he isn't supposed to have any vaccinations for 12 months after his last dose. Seriously, read the link in this paragraph. It's pretty cool stuff.

Julian pretty much slept through his entire infusion of the IVIG. I think we started it at around 4:00am and he just slept like a sweet little angel. His fever broke during the treatment and it didn't come back at all. It still hasn't. Yay! :)

He had no adverse reaction to the IVIG and he just did amazing. Because of the fact that he had no reactions, they wanted to get him in for an echocardiogram sooner rather than later and they decided that they could do that before his infusion was complete. This was his first of many wheelchair rides in our five day stay at TCH. He liked it. And, we were in the elevator with some Star Wars guys! That was even neat for daddy. lol

We were in the elevator with these guys on the way to the cardiology floor! How cool is that!?

First wheelchair ride, EVER. Not the last, though! 

Julian all hooked up for them to take pictures of his heart.

He sat through the echo like a champ. Didn't even budge. He was an amazing patient. Way better than most adults. And, that's not just his proud mama talking. We heard it from lots of hospital staff! After the echo, we got to go up to our new home for the next five days! A real room just for us! And, the couch turned into a bed...It felt super fancy. Once we were in our room, Julian finished his IVIG infusion and then we waited. We did a lot of waiting for doctors. This wait was a little longer. I was waiting for doctors to tell me what, if any, damage was done to my four year old son's heart due to us being overlooked and shooed away by various doctors in the last few days. All we could do was wait and pray...