Slowly, things are becoming more normal around here. I say "slowly" because I've become a bit neurotic when it comes to Alex. I've been telling him not to run too much or get too excited. I'm making everyone wash their hands religiously. I've also been waking up at night to put my hand on his back and kiss his head to check for fever. Our instructions were clear that any fever means a trip back for at least 24 hour observation.
I have a few minutes so I wanted to sit down and write out as much of this story as I can. The more I talk to people around town or on the phone, the more I realize that people know the outcome, but they get confused as to how it got so pear shaped. It's hard to express, because even I'm not sure. I'll do my best. So, here we go;
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On Thursday, February 8, Alex and I were laying in bed reading a book. I noticed he looked a bit flush. I felt his head and when it felt warm I called to John to bring me the thermometer. 103F.
Huh, I thought. He didn't feel warm earlier. This is weird. But, this was also Alex. Like Kristyn, Alex is a fever runner. He'll get a high fever if the wind blows in his face. Since Alex has febrile seizures, I gave him some Motrin (Tylenol does nothing for his fevers) and put him to bed.
The next morning, he felt okay. A little warm, but he was in good spirits and more Motrin helped him out. I was watching a friend's kids for the morning and he played nicely with them, but he had a few uncharacteritic moments of being completely unreasonable. He would suddenly grab his head and yell out "I don't like this! Make this stop!", but I had no idea what he meant. I had soccer that night and left another syringe of Motrin out so that John could give him son if he felt warm. When I got back John said his temp had been 104. I went in to check on him, and he seemed warm, but comfortable, so I went to bed.
Saturday morning about 4am, Alex woke up screaming. He was hysterical. I brought him to our bed and took his temp again. 104.6. How could that be? He said his throat and ear hurt really badly. John and I looked at each other and decided to take him in to the Almonte ER.
Once there, I realized we had woken up the overnight nurse and the ER doctor. I felt badly, but since Alex has a history of seizure, I didn't want to take a chance. The doctor said that Alex's throat and mouth were a bit red, but nothing that warranted immediate treatment. He took a swab and we were home by 5:15am.
Erin and Meghan had dance that morning and John was away. The task of trucking them around was left to me, but I managed to arrange for Meg to be picked up by fellow dance Mom (Meg later spent the night at her house) and we brought one of Erin's dance friend's back home. At this point Kristyn was now sleeping over at her friend's house too. So we only had two of our own kids, but one of someone else's.
Shortly after getting home with Erin and her friend, Alex ran into the kitchen and yelled out "What is all this? I itchy!" I threw off his shirt and he was covered with a fine red rash - especially in his groin area. He cried out "Oh! My balls. My balls! They're so hot!"
I immediately thought he had the chicken pox and I was thrilled. I called John and asked him to get all the supplies we needed when Kristyn and Erin had them. I contacted a few people I knew wanted to expose their kids and we arranged to meet Monday. This was going to suck, but it would be worth it. I kept watching for the spots to get fluid filled or crusty, but none did. By Saturday night the rash had spread to the point where he looked sunburnt. His hands and feet were particularly bad, extremely red and very swollen. I assumed they were swollen because he couldn't stop rubbing them.
Erin's friend's Mom came over to drop off some pajamas etc... and mentioned either Scarlet Fever or Cocksackie Virus. Yes! Of course! Scarlet Fever! This was good, because we had had a strep test that morning. We would just wait for the results.
Over the course of the evening it was clear Alex was getting worse. He was cranky and tired and red everywhere. His feet and hands were so puffy and swollen that he couldn't sleep. I spent most of the night with cold cloths on them. When it become uncontrollable, we headed back to the ER. Once there the doctor barely looked at him. He said we should wait for the strep test but that clearly Alex only had a virus. He gave us a sheet on viruses, which said "Your child does not need antibiotics or a hospital stay." I was told not to return. The nurse added "unless he became much worse" to be a bit more user friendly, but I was brushed off. I did not feel reassured.
Sunday the 11th was Alex's 4th birthday. He had requested breakfast for dinner and we all tried to remain festive, but it was clear to all the adults in the room that Alex was quite ill. Still, I had been told by two different doctors that Alex only had a virus and to wait it out. On the night of his fourth birthday, Alex went to bed miserable and had an awful night. Again we gave him Motrin (we had gone through almost a whole bottle since Thursday) and some Benadryl for the itchiness he seemed to be experiencing in his hands. Needless to say, we did not sleep much.
Monday morning I woke up to get the girls off to school. It was the typical mayhem you'd expect from our house. Lots of yelling and running and hair pulling brushing. About 7:30am, Alex yelled out for me and he sounded pained. I ran into his room.
"I tan't get out of bed. It howts too much ederywhere." He said.
"What do you mean, Buddy? Can you stand up?" My heart was in my throat. I knew just looking at him that something was wrong with my son.
He could not stand up and he was insanely feverish. I didn't even take his temp. I calculated in my head that this was day four of a very high fever. That seemed like too long. Now he was red all over, swollen like he was 9 months pregnant in August and he couldn't move. He couldn't move!
I spit out some babbled details to John, told him to get the girls on the bus and I would call him when I knew what the hell was wrong.
We got to the ER, again. At this point I should have gone straight to CHEO but it was rush hour and Alex needed someone quick. Once there, the nurse was obviously concerned. She gave him some Motrin and Tylenol immediately and called the doctor in. I immediately recognized her as a fellow soccer coach and relaxed a bit. I explained everything calmly and finished with that morning and Alex not being able to get out of bed or walk. She examined him carefully from head to toe.
When she got to his mouth she asked "Does his tongue look any different to you?"
I was stunned. "Yes. What is that? It's huge and why is it all red? His lips are very red too. Why is that?"
"I'm not sure, but I've got some ideas. I'll be right back, okay?"
She left and I saw her go to another room to look at books and the computer. It was then that I remembered that Meghan was at home with John (she goes to SK three full days a week on Tues/Thurs/Fri) and he needed to leave for Syracuse. I called him and told him to bring Meg to me. I figured it was Scarlet Fever still and that we would just need some antibiotics and we could head home.
John got to the hospital with Meghan shortly after I called him (remember how small our town is). Just as he entered our little treatment room, the doctor came back in.
"Have you ever heard of Kawasaki Disease?" she asked us.
Neither of us had. She explained it to us very briefly, but because Alex did not have all of the symptoms I think I talked myself out of believing he might happen. It seemed remote. So I sent John off to Syracuse and called my friend Moyra to ask if she could watch Meghan for the day while we figured this out. She was there in minutes and insisted on waiting until we knew what was going on. She had seen something on the news about it recently and reiterated how rare it was, so I relaxed.
At 11:30am Moyra had to leave to pick up her daughter at Nursery School (same as Alex's, different class). She took Meghan with her and said she would come back with her shortly and we would go from there. When Moyra returned with both her daughter and mine, the doctor had come back in with a game plan. She wanted us to drive into Ottawa to consult with a pediatrician who had seen Kawasaki before. She trusted him to either confirm or refute her possible diagnosis. If he confirmed it, Alex would need to be admitted for treatment, so we had to face the possibility of a hospital stay.
Our appointment was for 3:15pm and it was noon. Moyra brought us back to her house, made us lunch and together we came up with a game plan for the day. She would pick up Kristyn and Erin, take Erin and Meghan to dance that night and hold on to them until John returned home (since John later had to meet me at CHEO, the girls ended up with her for the night, Saintly friend that she is). Kristyn's friend's Mom would pick her up from Moyra to take her to Musical Theatre and then bring her back.
I drove into Ottawa at 2pm and arrived at Dr Cooperman's office just before 3pm. We were early, but his wife said that was fine, they had been waiting.
We spent all of five minutes with Dr Cooperman and most of that was him telling me what to do next. He said we needed to go the CHEO right away. He agreed with Dr W that Alex most likely had Kawasaki. Since he was still missing some markers, he should be admitted to CHEO 48 hour observation to see if it developped as he thought it would. He gave us a note, a sort of "front of the line" service for the CHEO ER. He also gave us his card, with his private line, should we have any questions or should they try to say Alex could go home and we could wait there.
I walked back to the truck shocked. How did it go from a simple fever, to chicken pox to being admitted to CHEO for 48 hours? I had packed some toys and jammies for Alex, but nothing for me. I didn't have a toothbrush or deodorant or clean underwear. Why I focused on underclothing is beyond me. At this point I was so tired I could feel it in my bones. I had no idea that it would only get worse. I was about to experience a whole new kind of tired.
We arrived at CHEO at 3:30pm and presented our note to the nurse at the desk. She took Alex's vitals and weight/height and then sent us to a waiting room just off the treatment area.
"Isn't that the waiting room there?" I pointed to a room full of people.
"Yes, that's the waiting room for non-emergent patients or possible but unclear fractures. That room is for true emergency patients. Your son needs a doctor in the next hour."
Shit.
We were called to the ER Observation Room at 4pm. It did take a while to see a doctor from there, I thikn 6pm, but Alex had had Motrin and was feeling well enough to watch TV and chill out while I read.
Again, the ER doctor agreed with both Dr Cooperman and Dr W. Alex appeared to have Kawasaki, but a diagnosis called for high fever for 5 days and four of the five main symptoms. Alex had had a fever for only 4 days and while the symptoms were starting to show themselves (stawberry tongue, joint pain, cracked red lips, rash/swelling, swollen lymph nodes), he was still missing red eyes and extreme irritability. He said they were all progressing typically of Kawasaki and that if they were all correct, it would manifest itself and be clear within 24-36 hours. He was admitting Alex to be watched closely at least overnight and into the next day. John had arrived earlier and was there as we started the admission process.
We were sent up to the fourth floor into an isolation room. We met our night nurse who was very sweet with Alex, who was very pissed off that he was not going home. We hot him settled and she explained that at this point, he was just being observed. He would not need an IV and he was free to eat or drink whatever he tolerated. She showed me how to work the fold out parent cot (aka archaic torture device) and where the kitchen was.
Alex did not sleep well. His feet and hands were bothering him more than ever. He was constantly crying out "Help me! Somebody help me! Anybody! PLEASE!" He had extreme diarhea. It was 4am, he was on the toilet, crying and I noticed his eyes were red like I had never seen them before. I sat on the floor and cried. I cried because I knew this was what they were expecting. I cried because I was bone-tired and afraid. I cried because I was lonely and wanted someone to tell me everything was okay. I cried because when I had called Moyra to tell her all the things the girls had to do the next day, she already had everything under control. I wanted to be home with my kids, all of them, and have it under control. I didn't want to be sitting on a CHEO bathroom floor crying. I had no control over anything.
At 5am, Alex finallly fell asleep. So did I. We were woken up at 9am to take his vitals again and the nurse realized that Alex was very hot and he was not sweating. "This is going to be high." she said as she took his temperature. She didn't tell me what it was. Just that she was sure he had Kawasaki. "He's so textbook it's frightening."
I felt slightly relieved at that point. At least we knew what was wrong and they seemed to know what to do.
The team of doctors met with John and I early in the afternoon. As soon as the treatment was ready he would be getting a 5 hour course of Intravenous Immunoglobulin (IVIG), a blood product that would help him immune system fight the effects of Kawasaki, reduce the swelling and get him back on track. Then he would be given high doses of aspirin to think his blood and reduce the chances of aneurysms or swelling of the arteries to his heart. If, after the IVIG Alex appeared to improve, they would watch him for 48 hours. If he could remain fever free for that amount of time, he could go home. I was calculating the time in my head, but I couldn't even remember what day it was to start from.
It took a while for things to get organized. John went home to get the girls from school. I had to sign consent forms from Canadian Blood Services that stated I understood the risks of treating my son with a blood product. They had to calculate how long he would need it and how much. Since he is a big kid (46 lb and 46" tall) he could tolerate more of the IVIG in less time, so we only had to do a 5 hour course.
The treatment started at 11:45pm. When they brought it in, they brought a large bag of meds with them. In case he reacted badly. That bag looked scary and seeing his name on the bag made me cry a bit, but earlier that day I had cried because I couldn't find my other white sock, so it wasn't hard to get the water running.
For the first hour, Alex had to be under nurse supervision. They sat with him, took his blood pressure and other vitals every 15 minutes. He had to sleep with a cuff on and many monitors. He was so sick that he was able to do this until hour 4. At that point he had extreme stomach pains and he was very confused. He kept having to go pee, but he would only pee small drops. Since he refused a bed pan, we had to unplug him each time he did this, which was every five minutes at one point. When we got back to bed the last time he was out of bed, he started to scream that he was so itchy. He was rubbing himself raw with the SAT monitor and his IV board.
The nurses were afraid he was reacting to the IVIG. It was unlikely that he would do that four hours into treatment, but it could happen. They called the team of doctors from his room and a doctor was there within three minutes. The lights were thrown on and the doctor immediately examined him. She ordered them to stop the IVIG and then she removed Alex's call button from the wall. I've never seen so many doctors arrive so fast.
I was pushed aside and that was fine. I was having my own little freak out party on my torturous cot. I started to picture myself at Alex's funeral. Why hadn't I got his hair cut? His toe and fingernails were ridiculously long. Were they judging me for that? Just as quickly as these thoughts entered my mind, I saw him as a teenager, running happily. Then I imagined him having a heart attack. I was everywhere and nowhere. I could not believe I was where I was and I was terrified. Through all this, I could hear Alex yelping and screaming. He wanted everyone to leave him alone. He wanted to go home and see the girls. He wanted to play Nintendo.
After a few minutes they came to talk to me. They had given Bendaryl to Alex and he was sleeping. They were not sure if the itchiness was because of the IVIG or the Kawasaki. Kawasaki had so many elements they did not yet understand, so they were hesitant to say it was the IVIG just yet. What they did know what that he only had a small amount left, about one hour. They wanted to know if they could reduce the meter and spread it out over two hours and continue. They were asking me. Me?
"I think it's 5am and you're the doctors. Make him better."
And so we started again. They monitored him for the first hour again and then let him sleep. I think I fell asleep at 6am as his nurses sat by his bed.
At 10:30am, Alex's day nurse came in to check on us. I heard her taking his temperature and I shot out of bed. I was stunned by what I saw. Alex was bright eyed (even if they were red) and white. Not red. Just white. His hands were still puffy, but they were less red and angry. Best off all, he was cool as a cucumber.
We plugged through that day. He was being given 5 baby aspirin 4 times a day and tolerating them well. My father in law brought me my laptop and I set it up. I began emailing people to let them know what had happened over the last few days. I posted on my blog and the story pretty much goes from there.
Wednesday night I slept at home that night and John at the hospital. When I walked in the door at home, the girls were visibily crushed that Alex was not with me. It was late, I had drive home through snow and I was tired. I wanted to get them to bed, but they had permission forms to sign, homework to initial. All of a sudden, I feared the normalness of being home without Alex. His brand new bike still had the bow on it. His bed was still made. I had to make lunches. Tuck in the girls. I had to sit alone in my bed crying into my beer. I wanted to be at the hospital desperately and even considered letting John's Dad know I was going back. But I fell asleep and I slept all night. I woke up refreshed and returned to the hospital with hope that he would be coming home soon. Even though I came back to find out he had had a fever throughout the night, they thought it might be from the IVIG since it was low grade and non-spiking. From there, it was able to unfold here and here and here.
Now that we're home, I'm not as much of a basket case as I thought I would be. When they first discharged us on Friday night I was afraid to go home. As much as I hated the sounds and noises of CHEO, I knew that we were safe there should something happen. At home were live out of town. Is the closest hospital, though only 7 minutes away, equipped to handle any emergency? Slowly though, I've realized that we just have to take it as it comes. Follow the doctors orders and keep an eye on him.
It's Sunday, 10 days after this all started. Alex has some colour back in his face and he begged his Dad to wrestle with him this morning. Normalcy is settling in, with him here. I'm still worried and I think I will be for a long time, but until someone tells me that I need to, I'm not freaking out - well, not right now anyhow. Ask me at 3am when I can't sleep.
