This post is really an aside from my normal posts. It’s an account of an experience we had with every parent’s nightmare – when your kids get really sick. It’s a pretty long post, and is more of a journal entry to help me get it all out of my head so I can process this whole experience.
Kawasaki: More Than Just a Motorcycle
My husband is quite a dirt bike fanatic. His dirt bike of choice is none other than the green of Kawasaki.
However, over the last week, we were introduced to a whole new side of Kawasaki. One that has nothing to do with helmets, handlebars, or knobby tires. It hasn’t been the most pleasant of experiences either.
A couple of days after talking with my husband about getting our oldest son a little motorcycle, our youngest son got a different form of Kawasaki … an illness rather than a motorized vehicle.
How It Started
Last Monday, Xander (my 2 1/2-year-old son) woke up with a bit of a runny nose. Other than a little snotty, he seemed fine. During the night, Xander woke up several times and started feeling a bit feverish and complained of a sore throat. Unpleasant, but nothing out of the ordinary.
Tuesday the fever continued. His lymph node under his left ear began to get swollen and it was extremely tender. He vomited all over me and himself right before we went in the library (thank heavens he didn’t paint the contents of the library with the contents of his stomach!).He slept horribly through the night, screamed in pain when I picked him up, and wanted his daddy (who happened to be out of town on a hunting trip).
Wednesday was much the same. Xander just felt miserable and achy. His fever was up around 103 and I was exhausted from no sleep and worry for my baby. Tylenol and Ibuprofen did little to bring his fever down. We spent our days snuggled together in the Lazy Boy watching Chitty Chitty Bang Bang (Xander’s favorite) and movies from the library (when Xander would let us put something else in). I was pretty well on “Mommy-Arrest.” Xander didn’t want me out of his sight much less out of physical contact.
Wednesday night was particularly rough. Xander was so uncomfortable and feverish. He cried and cried. His neck was owwie, he wanted Daddy, he felt icky. My heart was breaking and his cry was not his usual cry. I knew something wasn’t right. I called the our pediatrician’s after hours nursing staff and spend almost an hour on the phone with the nurse. She said if the fever was still lingering in the morning to take him in to see the doctor.
The sun crept into my window on Thursday morning and shone on me and my little son’s feverish body. The fever still had not broken. Though I hold a general distrust of traditional medicine, I was desperate and so worried about my little man, I couldn’t do nothing.
First Doctor’s Visit
We went in to the doctor on Thursday morning and it was about as enlightening as wavering birthday candle in the world’s deepest, darkest cave. It didn’t look like a bacterial infection, they suspected a viral process and told me to bring him back in on Monday if his fever still didn’t break or sooner if he had any other changes.
My husband called Thursday afternoon when he was in an area with cell phone service. Though I was loathe to call an early end to his trip, I knew I couldn’t fly this plane solo any more. Knowing that I almost never ask for help (I’m a bit stubborn that way), he knew he had to come home toute suite.
Xander was much calmer with Daddy near, but his symptoms weren’t improving. It started to look like he had a red rash over his affected lymph node so I called up the pediatrician again (as this was one of the symptoms they said to keep an eye out for) and I didn’t want to wait till the weekend and then have to make an emergency room visit.
Second Doctor’s Visit
We made our way to the doctor’s office for the second time. This is day 5 of fever. The doc looked him over and said his lymph node didn’t show any signs of bacterial infection. His ears were clear and his throat was normal. She said to call again Monday if he still had a fever.
On Saturday, Xander’s eyes started to get bloodshot. You know, the dreaded “pink-eye” red. But there was no accompanying goop. Just red and painful-looking.
Weekend went by and Xander started to get rashes around his neck, armpits, groin, feet, back and chest. The rashes would come and go as the fever bounced around from 100 to 103. Monday morning rolled around and lo and behold, the fever still tormented my little dude’s body.
Third Doctor’s Visit
Monday afternoon I buckled my poor little guy back into his car seat for yet another jaunt to the doctor’s office while Brandon stayed home with our 4-year-old son.
Our regular doc was off for the week so we saw another doctor. He looked Xander over pretty thouroughly and then he laid the differential diagnoses on me. They were concerned that Xander was presenting symptoms of an autoimmune disease called Kawasaki Disease. They know very little about it and it affects a very small percentage of the population. For whatever reason, the body’s immune system flips on in overdrive and starts going a bit haywire and attacks the heart.
There are no tests for Kawasaki Disease, only physical symptoms. The doc wanted to run some bloodwork to rule out some other illnesses on the differential. So we spent the afternoon waiting, getting attacked by the vampirical phlebotomists (who gave Xander a very cute teddy bear he has grown quite fond of), waiting, and waiting some more.
Finally we got the lab results back, and they were somewhat indicative of bacterial infection. So with our fingers crossed they gave him two shots of a very strong antibiotic and sent us home. The doctor consulted with a couple other specialists who agreed that this was the best route at this time to rule out other infections or diseases. If he didn’t respond, we would probably have to admit him to the hospital for treatment.
Xander had no improvement with the shots, so we once again paid a visit to our pediatrician’s office. By now his lips are starting to crack and peel and he isn’t drinking very much and wants nothing to do with food.
Fourth Doctor’s Visit
By now, Xander is not happy to be going to get poked and prodded once again. He repeatedly requested we go find the truck and go home. I’m starting to lose my composure a bit from the stress and sleep-deprivation. My tears only upset Xander more so I have to keep it together for his sake.
So much waiting in a little room painted a tangerine-orange color with wallpaper border of spaceships, astronauts, and planets. Xander just wants to go home and find Daddy. Still waiting, waiting, waiting for the pediatric cardiologist to return our physicians call to consult on my little man’s case. Trying very hard to remain calm and positive and banish images of a child-funeral and living the rest of my life should this precious little guy leave us.
I don’t know how long we waited … seemed like an eternity. The doctor finally came in after talking with the cardiologist and gave me the news that no parent ever wants to hear…
The symptoms all point to Kawasaki … we are going to have to admit you son to the hospital for IVIG treatment … could be there 2-4 days depending on how he responds … if left untreated his immune system will attack his heart and damage his arteries … the hospital that specializes in this treatment isn’t covered by your insurance, but we can’t treat him here …
Through my tears and panic, I learned that the prognosis of this disease was very positive. He should have no lifetime effects from it. This initial treatment with IVIG should be the only treatment he requires (not like daily insulin shots for diabetics, or treatment like other autoimmune diseases require).
To the Hospital
We made our way to the hospital and got settled in our room. The hurry up and wait game continued. I talked with so many doctors, so many nurses. All were very nice.
They put an IV in Xander’s hand. Very traumatic for my little man. Very traumatic for mommy to have to restrain my child whispering assurances that everything would be okay and that they are helping him all the while they are poking him and sticking needles in his hand and all that it entails.
Brandon called his mom to come and stay with our older son so Daddy could be with us at the hospital. As soon as she arrived, Brandon came up to be with us.
Later in the evening they started the IVIG treatment. It didn’t take long for Xander to perk up and start grinning and showing a bit of his adorable self again.
Both Brandon and I were immensely relieved to say the very least.
The next morning, Xander’s fever was down. Our room was continually invaded by hoards of doctors and nurses examining Xander. My little man became quite resentful of all their administrations. He had an EKG (which was quick and painless) and then an echo cardiogram (not quick and not so painless). Again, Mommy was restraining her screaming baby while the very nice lady was getting measurements on his heart.
Home Again, Home Again, Jiggedy Jig
Though still a bit wilty, he was feeling decidedly better. No longer a limp noodle in my arms, Xander began making his displeasure at his hospital confinement known. A very good sign! Brandon and I carted Xander around in a little wagon they have for kids in the pediatric unit. We paced the fourth floor and visited the children’s play area many times.
Finally, we got the results back from the echo cardiogram and we were discharged and sent home!
Xander’s heart looked good except for an enlarged artery and a fluid filled sac around his heart (both of which should resolve on their own). We have an appointment to see the cardiologist on Monday.
The only medication Xander has to take is baby aspirin four times a day (which he protests both vociferously and bodily). We’ve been home for a day now. Xander is doing better. Still grouchy and tired, but he’s improving. I’m feeling quite exhausted (emotionally and physically) from this ordeal and haven’t even turned on my laptop for nearly a week and my cell phone has been on silent. I guess I need a bit of recovery time as well.
Make Every Minute Count
Overall, we feel so incredibly blessed! Our little man should have full recovery with no relapses or long-term effects. There were so many other kids at the hospital whose illnesses weren’t so forgiving.
My heart goes out to those children and the parents of those little kids!!! It is truly a horrible experience to have to wonder if you will outlive your own child and to look at a little body wracked with pain and be powerless to do anything about it.
Thank you all so much for your prayers!!!
I would like to ask a huge favor of all who read this post … please cherish every minute you have with your loved ones! Life is so precious and so fragile!
You don’t know if you have next year, next week, or even tomorrow. Tell your kids you love them OFTEN! When you tuck them in at night, you just don’t know if they will be there in the morning for you to hold and kiss.
Don’t spend your today’s fretting about your yesterdays and worrying about you tomorrows – all you have is right now. So go out and live it like it’s the last moment you have!
