So, back to our regularly scheduled programming...Julian's KD diagnosis and the things that followed.
The cardiologists and some student doctors filled our teeny little hospital room on the day after we first stepped into Texas Children's Hospital. We waited with baited breath...No. We were so nervous to hear the results of his first echocardiogram. The results were not exactly what we wanted to hear. Julian had two out of his four tiny coronary arteries that showed dilation. That's 50% of his arteries! Booooo. 25% of children who get diagnosed with Kawasaki Disease will have coronary complications. I feel like we should play the lottery. Julian has Kawasaki Disease, which 19 out of 100,000 kids will get. And, from that 19 children, 4.75 of them will have coronary complications. Wow.
The issue with the dilated arteries is that aneurisms can form and cause blockages and whatever other dangerous things that they do. When I think of aneurisms, I think of people dying suddenly in their sleep. Apparently, that's a brain aneurism and it's usually when it ruptures that the sudden death thing happens.
Now, don't get me wrong- I am not downplaying coronary aneurisms at all. It's a scary thing to hear that your son has a coronary aneurism. If you go to Wikipedia and look up coronary artery aneurism, there is the least amount of information I've ever seen on a Wiki page.
So, yeah...Julian had one dilated coronary artery and one dilated coronary artery that had an aneurism develop in it. The treatment for that is aspirin, and a lot of it! Julian was given 465.75mg of aspirin every five hours. He also had to get a three day IV treatment of high dose steroids.
Let me tell you all about these steroids. UGH! I didn't realize that the reaction that Julian would have from the steroids would be worse than the actual KD. For one hour a day, Julian's fluids were changed from his regular hydration liquids to this high dose bag of steroids. The first day was great. It takes a few hours for the medicine to cause him to have any sort of reaction. The first issue we had was the first night's bedtime. Julian was just super whiny. It's like he was crying and he didn't know why. The second day was worse. He got his infusion in the morning and everything was fine, until the afternoon. He was just crying about everything. It was like a total hormonal woman! He wanted eggs....eggs. He just kept crying to eggs. Of course the cafeteria wasn't making eggs at the time he wanted them. Then, he wanted orange soda IN A CAN. Not a bottle, a can. Seriously. I walked the halls of Texas Children's Hospital searching for a can of orange soda. There were only bottles. He was devastated. He then accused daddy of drinking some of his orange soda. It was crazy. By the third day, we figured out how to handle the meltdowns- little to no environmental stimulation. Dark room, calm music, and trying to get him to sleep through the meltdowns. That was a very trying time for us.
Finally, after six long days at TCH, we got to go home! May 6th, 2013! YAY! During the month of May, we have many, many followup appointments at TCH with cardiologists and rhumatologists. He had a few echo cardiograms done on his heart to make sure no more aneurisms developed after his initial diagnosis. The news was always good, never worse. The dilation and aneurisms were staying the same. I am grateful for that.
Kawasaki disease is a very, very scary thing. I guess the unknown always is. This is our story. In the time since Julian has been diagnosed, I have read countless other stories from families who have children with Julian's same condition. I will continue to pray that more and more research is funded for KD. Knowledge is power. Cliche, right? Cliche, but true. :)
