Kawasaki Disease???

Well, I can imagine that most might have thought that I have abandoned my blog. Not true. I have only been majorly preoccupied as of late. With what, you might be asking yourself. Well, here is my story. It's a story that would be good for any parent to sit down and take in for information sake.

It all started Thursday of last week. It wasn't a majorly eventful day, just a regular ordinary day. Brian was home from work and we were changing Abby's diaper, when we noticed that she seemed to have a little rash on her leg. It wasn't anything really weird. For all we figure it was probably nothing more than a little bit of dry skin. However, that night she refused to sleep in her own bed, so off with Mommy and Daddy she went. By Friday she started to become fussy, which is completely odd for our every so easy-going little bundle of delight. By evening things took a greater shift. I had noticed that Abby was getting warmer. Sure enough, after taking her temperature, we discovered that she had a fever. So we pulled out the good old Tylenol. Again, she was back in bed with Mommy and Daddy. She was so restless. As the night went on I could feel the warmth coming from her little body. I had noticed before bed that her rash was a little worse and at 1:15am we got up to check her temp again. This time it was up to 103 F. It was time to take her to the hospital. So, off to the hospital we went. After a very little while of waiting (in and out in 45mins) we saw the Doctor. He looked at her red eyes and rash and decided that it was foot and mouth disease. He sent us home with the instructions to give her Tylenol and Advil. So, home we went and followed the Doctor's instructions. After a horrible night of lack of sleep, we woke only to see that Abby's rash was continuing to get worse. Even her lips were being effected. The rash continued on through the day getting worse in appearance. By evening she was almost covered. I wanted to cry. My poor baby girl. She was so miserable and so sick. She clung to us, and in particular to me. She didn't even want to nap without me. Still we continued on with the Tylenol and Advil. Saturday evening was no better. She was up constantly and all I could do was to try to keep her hydrated and somewhat comfortable. I just wanted this horrible thing that had taking a hold of my little girl to leave.

Sunday, Abby and I stayed home as I tried to comfort her as best as I could. By this time her rash covered her little sick body and her appetite had plummeted. When she woke from the nights sleep, her beautiful little lips were nothing more than a big ugly scab that seem to bleed without much effort. She was so miserable. When Brian got home from church we decided that it would be best to take her in again. So, we bundled her up once again and headed for emergency. She was so tired. Our active and lively girl who loved the independence of walking all around creation was now exhausted, weak and only wanted to be carried. Our visit to ER this time became quite a longer ordeal. However, we had no choice and there was no thoughts of turning back. Eventually we saw a doctor. This time they took her blood and seem to examine her a little more thorough. Unfortunately, when they came back with the results, they once again told us that it was a virus. It was worse then what they had originally thought, but still a virus. So, once again we were sent home with the advice to give her Tylenol and Advil. They also advised us to give use Aveno moisturizer on her to help with the rash. They told us that it would likely be over in about 2 weeks time. "WHAT?? I can't have my baby suffer like this for 2 weeks!" What can you do? After all, they are the doctors.

Sunday night, Brian had accidentally picked up the wrong kind of cream. Instead of moisturizer he picked up the diaper rash cream. It was too late to get something else for her, so we put the diaper rash cream on her figuring it couldn't hurt. I also advised Brian to sleep in the spare room, since he would have to go to work the next day and it was going to be a long day for him. We slept a little better, but not by much. She was still up, needing comfort, water, reassurance and some Tylenol.

Monday, seemed hopeful. The diaper rash cream helped a little. Her rash had died down a little. However, she was less miserable then the day before. He lips, no matter what we did or put on them, got worse. At one point during the day, after trying to carefully wipe her little mouth from what little breakfast I could get into her body, her lips started to bleed so badly that the blood was literally pouring down her face and into her bib. After quite a few tissues, I was able to stop the bleeding. This upset me greatly. I wondered if my little girl would get well again and wanted this horrible thing to pass. Later on in the day my Dad arrived. He was shocked to see the state of his grand baby. Frankly, we were all shocked at what was happening to her. Monday night's sleep was no better than the nights before.

Tuesday, I struggled to keep her hydrated. She wasn't interested in anything. It was almost unbearable seeing her like this. She was almost always whimpering constantly. We called into our family Doctor to see if they would give us some suggestion to help her become a little more comfortable. Without seeing her, the nurse mentioned some cream that might help her lips. Brian picked it up at lunch time and brought it home. However, despite these efforts and trying to use Vaseline before, nothing was working. I just remember trying to give her a bottle and seeing the blood sliding around the nipple. It was horrible and heart breaking. I remember trying to stay calm and collected, when all I wanted to do was break down and cry. Tuesday night was no better than the nights before.

Wednesday, enough was enough. I looked at my baby girl and her horrible bloody lips. I looked at her red glasses eyes and her weak little body and said that they have to do something. This time, no ER. So, I called our family Doctor and was able to get in that morning. My Mother-in-law (Grammy M.) was able to drive us in and Brian joined us after we made our way into the inner waiting area. Soon enough our Doctor came in to look at her. It didn't take long before he called the hospital to talk to the Pediatrician. Sooner than later, Grammy and I were off to the hospital, while Brian returned to work.

At the hospital, we made our way to the Pediatric Center where we were able to get into a room fairly quickly. They were very careful to make sure that she wouldn't infect the other children who were healthy. Soon, we saw the Pediatrician who took a very good and long look at her. She looked at her glands and noticed that she had an enlarged one. She noticed her eyes were red. She looked at her skin and looked at a variety of other things. After looking at her extensively, placing her through some test and calling in her colleagues (2 other Pediatricians) it was concluded that she had 4 out of 5 signs of having a disease called Kawasaki Disease. My first thought was, what is that? Who ever heard of something like that! She explained to us the seriousness of this disease and that it is something that, if not treated, effects the arteries of the heart and it can cause aneurysms and blood clots. If not treated, it would likely cause death. Now you tell me, how would you feel if you heard that your child has a potentially deadly disease? Still, I tried to remain calm and collected. I knew I had to be strong for her so I could keep her as relaxed and calm as possible. Still, I could feel the heat of tears whelming up in me as I fought them back and took a few breaths. The Doctors let me know that this is quite a rare disease and they are still not sure what causes it. They only see one case a year. Also, they let me know that it is not contagious in any way. As I continued to allow the information to soak in, the Doctor made a called to Halifax to discuss Abby's case, the treatment and to ask for permission to treat her here. All went through without a hitch. This was nice, because otherwise we would have travelled to Halifax right away. The best part of all this is that we caught it in time. Had we waited longer, Abby may have been in trouble. They try to treat the disease within the first 10 day period. Beyond the 10 days, trouble can arise. So, it is a disease that needs to be acted on fast.

As we prepared for Abby to be admitted we had to go get some blood work done. She hated it, but the ladies taking her blood were so good to her. They even gave her a little hand-made doll and two stickers.

Eventually we were admitted and sent into Pediatrics where they prepared her for two long and exhausting nights. Brian arrived just before we made our way in. I have to say that I was surprised at how well she did with getting the IV in her hand. She didn't cry or move. I just kept on reassuring her, but she seemed more fascinated with the female nurses and Doctor around her. Perhaps she was just too exhausted to care. I'm not sure. Whatever the reason, she did well.

First, they wanted to rehydrate her. Abby and I made ourselves very comfortable on the chair with a pull out foot-rest and just let the nurses do what they needed to do. By evening they were ready to give her treatment. During the night Abby was able to sleep in her own bed for a little while. However, by 11:40pm she was woken up by their regular 15 min check up on her. I tried to get her back to sleep in my arms in order to place her back in her crib, but it was useless. Every time I tried she would wake up. I was getting exhausted. I could feel my body slowly wearing it self down. Finally, I decided I would take her in bed with me. From there we slept better. Well, she slept better. I was able to get a few winks, but it was sometime hard to sleep with a hand in your face or being hit in the face by the board that kept her hand with the IV in place so that she couldn't bend her hand or pull out the IV. Tired, worried, exhausted and now getting sick myself, I allowed myself to have a small quiet break down before I pulled myself together emotionally for the day.

As the day began I noticed some immediate improvements to Abby's health. She still was clingy, but that was to be expected. She had no desire to walk, but I wasn't worried about that. I was just glad to see some improvements. The nurses had worked on her lips all night long and so she was starting to look and act more and more like her old self. I was so glad. My baby was coming back to me. However, her mother was becoming more and more sick. Eventually, my head was throbbing. I felt so sick, sore and weak. I started to feel dizzy and my cough that I developed was getting worse. Grammy M., knowing of my lack of sleep for the last week, came to give me some relief by staying with us and taking care of Abby while I got a shower and ready for the day and then sat in the chair and tried to catch up on a little sleep or at least relax. However, this doesn't always work as I or others plan. I have a horrible tendency to keep going. Instead of sleeping I wanted to called to catch Brian and my family up on what was happening. Of course I also had to unwind from the day and get information from the nurses. I was very nice to just talk though and get the fears of the day before off my chest. In the afternoon, my wonderful sister-in-law stepped up to plate with her husband and made a visit to help out with Abby. This time I did take the opportunity to take a nap. On awaking we found ourselves getting ready for an ultrasound on her heart. She had to be put to sleep so that she would be perfectly still. This check up went forward without any problems.

After the check, Brian, Wendy, Jake and I took advantage of the time and went for an early supper. However, during this time I could feel myself feeling worse and worse. Because of my ill-health and the need to keep Abby away from any germs, I had taken Wendy up on her offer to stay with Abby for the night. My plan was to stay as late as I could and then to head home with Brian for a night's sleep. I soon realized that I needed to go home sooner than later. So, Wendy headed home to get her stuff. By sometime around 7pm, Wendy returned and Jake drove me home, leaving Brian to stay with Wendy till later on in the evening. Walking to the door I felt a sense of guilt and sorrow. I didn't want to leave my baby, but I did know she was in good hands and with someone who loves her. I knew it wasn't a mistake because of my poor health, however, she is still my baby. It hurt to leave. On arriving home, I as absolutely confident that I had made the right decision, since I felt as if I was going to pass out on the floor. I was dizzy, heavy, and light headed all at once. My head ache, my throat was so sore, my body was weak. I got a call soon after I got home from our good friend Marko to see how we were doing and how Abby was. It was good to talk and to be reminded that we have good friends standing behind us ready to help. At once point in the conversation I just wanted to break down and cry. I was so exhausted, sick and so much weighted on my heart. Marko was so good to listen. Thanks Marko.

Well, Abby came home on Friday. Once again Grammy M. stepped up to help by coming over to babysit while I got some sleep. I had to wear a mask around her to keep her from getting my sickness. Marko and Laura sent over some supper for us to enjoy on Saturday. Thanks you two. It was great.

As for Abby, she is doing great now. She looks like her old self. She acts like her old self, although she can be a little clingy in the morning. She's even walking again, although she can seem to be a little more off balance at times. So, she is coming along well. It's so nice to have my beautiful, happy, easy-going baby back again. You never appreciate good health as much as you do after they go through something like this. More importantly, you realize all the more how much you love them when you go through something like this. At her worse, I remember cradling in my arms and telling her how beautiful she is to me and how much I love her.

So, why have I gone into so much detail. Somehow I figure it might help someone else. Seeing your child sick is hard, but watching them go through something like this is painful. I also wanted to go into detail about this so that other parents might become more aware of this disease, it's signs and symptoms. Watch for rashes, continual high temperature (although Tylenol and Advil can mask this), unusual cranky behaviour, swollen glands accompanied by low appetite. But in particular, watch for red eyes without any discharge. The eyes are a big thing. If you think your child may have this, talk to your Doctor about it. It needs to be looked at right away and treated sooner than later. Mom's trust your gut regardless of what the ER says. You'll thank yourself end.