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.

Saturday, 31 January 2015

"You Can't Make This Up!"

The other day, while having coffee with a friend, I was telling her the things that have happened over the past few weeks. As I finished talking, she began laughing and told me, "You can't make this stuff up! You should write a book." Which reminded me that I have been wanting to start blogging again.

There are a number of reasons why I haven't been blogging, but we'll shorten all of that into a few simple words: real life. It's hard to believe that a year and a half has gone by since my last post. I will share a couple of highlights of the 18 or so months in a future post, but this post is about the stuff my friend claimed I couldn't make up.

It started two weeks ago, on laundry day. My washing machine will hold an extra large load of laundry, but my drier could only handle half of that amount of laundry at a time. I started with an extra large load of darks. Half of the load has been through the drier, folded, and dealt with. The other half of the load is in the drier and I decide to lay down for just a bit. So, here I am, laying on the couch starting to drift off and all of a sudden my body tenses. Now, I lay there listening, trying to figure out what has changed; why do I feel like something is wrong? The furnace is on, but that sounds like it always does and there are no strange odors. The drier sounds like it always does. None of the smoke alarms are going off and the cats are calmly laying with me, looking at me with puzzled expressions. (Yes, cats can look puzzled.) After trying to convince myself that nothing is wrong for 10 minutes, I finally get up and head to the basement. The furnace seems fine, so I stop the drier and open the door. My laundry is all twisted into one big knot, suspended in the middle of the drum, literally hanging there. A drawstring from a pair of pants had gotten caught on something and the laundry had all twisted up on these pants. So, I get this semi-dry laundry untangled, out of the drier, and start looking. The drum had completely detached from the back of the drier; I could put my hand through the opening.

I first took a moment to be thankful that there was no fire. Then, I looked at the pile of semi-dry jeans and things and considered the second load of laundry sitting wet in the washing machine. Crap. I have no drying rack or anything like it and I only have so many chairs to drape the laundry over. I called a friend to ask if she thought my laundry would dry if I were to hang it outside. Now, it was -11C outside. (That's 12F for all you stateside readers.) Her response was something along the lines of, the Mennonites do it, so maybe? I figure I might as well try it, at least with the clothes in the washing machine. This was a load of colors, a small load of lighter fabrics, lighter than denim, anyway. By the time I got to the bottom of the laundry basket, the clothes were crunching. I look down the length of the clothesline. I do not see clothes fluttering nicely in the wind. No, what I see is clothing that has frozen enough that is moves like a piece of cardboard. Oh well, if Ma Ingalls dried her laundry outside during a deep freeze, I might as well leave them, right? I head back inside for a cup of coffee (I needed to thaw my frozen fingers) and to consider what to do with the rest of the wet clothes.

I remembered Husband had come home at some point with a length of clothesline, so I went on a hunt. I found the clothesline, grabbed a clamp from his workbench and headed to the front of the house. We have two rooms that run the length of the house, with a set of double doors that separate them; we keep these doors open. My plan was to wrap one end of the clothesline around a hinge pin and clamp the other end to a shelf at the end of the room. This worked wonderfully, except it wasn't nearly long enough. I had to figure out a way to run the line the length of both rooms. I first tried attaching the rope to the shelf that we keep our dvds on, but it was too unstable. I considered putting a nail in the wall and clamping the clothesline to that, but our walls are plaster so it's not as simple as using a hammer and a nail. I head back down to Husband's work bench for a drill and a screw. There are 3 drills in our house, all battery powered. I found two drills, but no battery packs; not one. Plan C: find the large nail that I want and hammer it into the wooden window frame. Except I couldn't find a nail that looked like it would work. Have you ever seen those little things that you can nail along baseboards to keep wires where you want them? They consist of a little piece of plastic with a little nail that goes through each end of the plastic. I used that. And it actually worked! I clamped that clothesline to the plastic thingy, twisted it around the hinge pin for support in the middle and clamped the other end to the shelf. Voila! I now had a place to hang the wet things to dry.

A few hours later, I was able to fold and put away the jeans and things. I headed outside to retrieve my frozen clothing. Amazingly, once they thawed, I found that they were considerably drier than when I first hung them. It was mostly the seams the cuffs that were still wet, so I hung them up inside to finish drying.

Because my laundry issues weren't enough to contend with, I was having company for dinner this same night. Thankfully, I'd made the sauce and cooked the pasta for the baked pasta the day before, so all I needed to do was throw that together and bake the dinner rolls. This I was able to do while I was waiting for all that laundry to dry and it's a good thing, too. The kids came home from school in some kind of funk, so it was a rough afternoon. Kiddlet started her homework 30 minutes before the company was suppose to arrive and had a meltdown because she didn't know what or where the Canadian Shield is. I wasn't much help because I didn't know there was a Canadian Shield, let alone where it might be located. We looked it up on-line and found conflicting maps depicting where the Canadian Shield is. As helpful as that was, it didn't seem to matter that much because the maps weren't all the clear on a 6 inch tablet screen. Why a tablet instead of the desktop computer? Our computer has become extremely temperamental and wasn't working.

Anyhow, we set aside the homework for later and got the table set for dinner; our guests arrived just as everything was ready. Our guests were incredibly gracious. They paused in the doorway to the dining room, took in the sight of all the laundry, and said nothing as they took their seats. We had a wonderful evening. Our company laughed along with us as I related my day and they helped Kiddlet with her homework.

All in all, the day ended on a good note. I learned that clothes will dry even if they are frozen, that I can improvise and find a way to make things work, and I learned that the Canadian Shield refers to the exposed portion of the continental crust underlying North America.

The craziness continued the next weekend, but I'll save that for my next post.

If you would like to learn about the Canadian Shield, visit the Historic Canada gives a wonderful overview.