Monday, 16 February 2015

Kawasaki Disease

Today I am veering away from the entertaining crazy days posts to talk about something serious.

Yesterday, published an article about Kawasaki Disease. It's titled, "The mystery of Kawasaki Disease and the quest for a cure." Please, read the article. Kawasaki Disease Canada describes Kawasaki Disease as, "an acute illness that causes inflammation in the walls of blood vessels throughout the body, including the coronary arteries which supply blood to the heart."

Why am I focusing on this? Because during the 18 months I was not blogging, Kiddlet went a round with Kawasaki's.

If you were following me in 2013, you may recall my post about Kiddlet's bout with Henoch-Schonlein Purpura (HSP). That was early spring; she was released from the hospital the beginning of April. It took awhile for Kiddlet to recover from that, but she progressed nicely. By the time school started in the fall, Kiddlet had been released from the care of her gastroenterologist and was being monitored by a nephrologist for kidney damage, of which there were no indications. Then in November, she got sick again.

Kiddlet, sick with HSP,  and Husband

This time, her symptoms weren't nearly as alarming as the persistent vomiting we dealt with in the spring. She had a headache and a persistent high fever. Our first sign that something was wrong was when she came home from school Friday complaining of a bad headache; this was Day 1. The headache and fever persisted through Saturday and into Sunday. At this point, my gut was screaming at me that something was really wrong, so we hauled her into the emergency room to get checked out. I didn't want to wait because if it was as bad as I felt it may be, we needed to know before Husband left town for work the next morning. At the ER, we were told it was a bladder infection, were given a script for antibiotics and sent home. Now, where we live, everything closes early on Sunday, including our pharmacy, so it was Monday morning before I was able to get the script filled. The pharmacist told me not to give Kiddlet her first dose of medication until evening because it must be given every 12 hours. No problem; I'll wait. By 4pm Monday, Day 4, Kiddlet's fever wouldn't come down and she had developed a rash on her shoulders and neck. Everything in me was screaming that she needed medical attention NOW, so I piled the kids into the van, dropped Strong-Willed One and Little Guy with my in-laws and told them that if ER tried to send me home again, I was driving Kiddlet to the next closest hospital.

We got to the hospital and, due to the very high fever, Kiddlet was seen quickly. The doctor told me that the rash was most likely a reaction to the antibiotics that had been prescribed. He seemed rather put out when I told him that she had not yet had her first dose because the pharmacist had instructed me to wait. I was thankful that she hadn't been given the medication yet because it meant that Kiddlet's rash couldn't be brushed to the side so quickly. Anyway, our pediatrician was on call at another hospital that night, so the ER doctor was able to contact her and ask what she would like done. She instructed us to go immediately to the hospital where she was; do not stop for food, get there as soon as you can. I found myself vacillating between relief that someone was taking me seriously and fear because they were very clear that I needed to get there asap.

We arrived at the hospital and were shown to a trauma room where we wait for our pediatrician. The nurses were wonderful getting Kiddlet settled and comfortable. The doctor arrived, examined Kiddlet and then we started talking. Now, when Kiddlet was hospitalized in the spring, I got in the habit of writing down everything, her vitals, making sure I got copies of the lab work, etc.. Before we had left the last hospital, I had obtained all the lab work results that had been done the day before when we first took her to the emergency room. Because I had all of this with me, the doctor was able to come to her diagnosis quickly. She led me out to the nurses station, had me sit down, and told me that Kiddlet has Kawasaki Disease. She pulled up a web page explaining Kawasaki Disease, what is, the complications and treatment, and walked me through all of this. The doctor explained to me that early treatment, within the first 10 days of the disease, is key to a complete recovery and since we're still in the first days of the illness, she should be fine. All I hear is, "her heart is at risk." Her heart! It's now midnight, Husband is hours away on the road for work and I'm alone with my very very sick kid.

You know, I don't think you ever stop needing your parents. It was the middle of the night, I was scared I was going to lose my child, so I called my mom. I woke her out of a dead sleep, explained what was going on and told her I needed her. My amazing mother left to join me just a few hours later.

This is the same hospital we first admitted to when Kiddlet was sick in the spring. When we got up to the pediatric floor and were shown to our room, we had the same nurses that we'd had before, which was actually quite comforting. After dealing with all the admission paperwork and getting Kiddlet's iv started, we were finally able to get some rest.

Finally settled and left alone.

It's been long enough now that I don't remember the exact progression of events at this point. I know that Very Dear Friend, who took Strong-Willed One and Little Guy last time Kiddlet was hospitalized, was already on her way to pick them up from my sister-in-law and take them for as long as we needed, and my mom arrived sometime midday. At this point Kiddlet's rash was rapidly spreading and she was showing other symptoms of Kawasaki Disease; I completed more paperwork consenting to a treatment of Intravenous Immunoglobulin (IVIG), the recommended treatment. Despite how very sick Kiddlet was, as long as her fever was controlled by medication, she felt fine. We were in isolation because of the rash, so were confined to our room; we couldn't even walk the hallways. Thankfully, my mom was there and was a source of comfort for both Kiddlet and I.

One of the symptoms of Kawasaki Disease is a rash. In our case, it didn't last for more than a few days, but was heartbreaking to see.

The rash covered her whole body, but she maintained a sense of humor through it all.

The rash disappeared by day 7, but the fever was still an issue. Kiddlet ended up needing two rounds of IVIG. At this point, poor Kiddlet had been confined to her room for 4 days and boredom was becoming an issue. Reading helped to pass the time, as did arranging and rearranging the items on the side table.

Kiddlet ready to leave the room

By day 8, all of her symptoms had vanished and she was aching to be allowed to leave her room. Because she had progressed so well, the doctor lifted the isolation order. That same day, there was a craft show going on in the main lobby of the hospital; Kiddlet was thrilled to be allowed to go.

Craft show

Finally, on Day 9, Kiddlet was released from the hospital and we were able to go home.

I wish I could say that that was the end of it, but with Kawasaki Disease, it's not. Kawasaki Disease can cause coronary artery complications, including blood clots and aneurysms. Kiddlet was put on low dose aspirin for months and came under the care of a pediatric cardiologist. Fortunately for us, Kiddlet was cleared by her cardiologist a year ago this month. She has no signs of coronary damage from her bout with Kawasaki Disease.

We did have one more serious illness, pneumonia, but she did not require hospitalization for that, and I'm very happy to be able to say that Kiddlet is in great health today. She is a happy and active kid. Kiddlet even joined the cross country team at her school, along with Strong-Willed One, and finished in 12th place.

Kiddlet and Strong-Willed one at the cross country meet.

1 comment:

  1. Wow Sage. That was a great post. I giggled at the Sense of humor pics. Funny Stuff. Check some of my posts, and stuff like that. Have a great week.