The first signs of the disease came to our awareness one year ago today.
They were fairly innocuous: fever, fussiness, and what appeared to be a rash or abrasion the left side of our toddler’s neck. On day two a lymph gland under the rash bulged out, angry, red, hot to the touch, tender, and rock hard. In the doctor’s office that day the pediatrician called in several other doctors to take a look and they stepped into the hallway for a quiet conference. Our boy was promptly referred to the hospital for a CAT scan. It would become the first of four multi-day hospitalizations in less than two weeks.
If you’ve ever walked into a waiting room or a restaurant and suddenly felt an oppressive awkwardness because a kid had an IV or a feeding tube, I know just how you feel. It’s hard to empathize with a parent who’s going through something totally foreign to you. You probably recognize that sick children and their parents want neither special attention nor to be ignored. It can be difficult to walk that line. It’s also an uncomfortable reminder of the fragile state of each life, and on some level (face it) you may be kind of glad it isn’t your kid.
My son’s condition, while a truly frightening ordeal, pales in comparison to cancer or any number of child-killing illnesses I’ve occasionally seen families contend with. Kawasaki’s Disease is rarely fatal, even if untreated.
Still, he was hospitalized four times. The experience helped me to feel special empathy for frightened and exhausted parents going through other ordeals.
Because our son Louis’s condition was undiagnosed the first time he went to the hospital, there was naturally the concern about it being something contagious. The CAT scan was inconclusive, but the swollen gland did not appear to be cancerous due to its rapid onset and whatever other indicators they look for. We were asked at least three or four times whether he’d potentially been exposed to a rabbit carcass, a question we would be asked repeatedly over the coming week. I don’t recall the explanation for this, but it became a bit of a joke between my wife and me.
The tentative diagnosis was a bacterial infection, and Louis was given IV antibiotics. We were in turn placed on isolation precautions for one day and two long nights. The hell of it at this point was being confined to a small room and having to wheel around an IV stand. It would be hard to overstate how difficult it is to keep an IV drip in a toddler’s arm.
Further, Louis was too uncomfortable and frightened to sleep alone and due to the IV setup had to sleep in a position he was unaccustomed to. For these reasons his poor mom had to share his small bed overnight while medical staff came in every twenty minutes to check on him. I would have taken a night, but I had begun my final semester of graduate school that week and my wife insisted that I go to class and get as decent rest as circumstances allowed. (Thanks again, Sara.)
Louis’s symptoms subsided after two nights and we were relieved to be discharged. At this point we were pretty worn out, but we had only experienced a few fleeting moments of real fear. That would change soon enough.
Upon being discharged Louis was prescribed a notoriously foul-tasting oral antibiotic on the premise of his earlier diagnosis. Over the next couple days, in spite of patience and stalwart efforts, we were able to get perhaps 20% of it down the pipe. When his symptoms resurfaced, they were naturally attributed to the antibiotics not taking effect. He would have to receive the treatment via IV, requiring another overnight hospital stay. It had been less than 48 hours since our return home.
The first several hours of the second visit were in many ways like the first. Then Louis started complaining of wrist and knee pain, repeatedly asking for kisses and saying he had “boo boos.” Strawberry tongue, rash and other symptoms had ebbed and flowed for several days, but twelve hours or so into his second confinement we were more concerned than when we had arrived.
Getting him to eat was next to impossible. He had his first ever fast-food cheeseburger because the doctor recommended it. The doctor. I’m not criticizing his judgement, I’m just remarking on the irony. Louis had eaten next to nothing for five days and it was imperative that we get him to eat. Because he had such a stunted appetite, he needed whatever provided the most calories per bite, even if it only loosely qualified as food.
We noticed he started leaning over furniture for support while standing. In a matter of hours he was no longer able to walk. He bent forward at the hips when he was taken from the toy table and when gently asked to walk he just stood crying, holding his arms awkwardly out for balance.
Confusion. Fear. Innocence. Pain. Seeing these bundled as they were in a 22-pound package stirred a combination of emotions in me that I won’t attempt to describe.
The antibiotics weren’t working, the CAT scans were inconclusive, there were no clear signs of neurological disease, and the staff had to admit that they were out of ideas. We were referred to Children’s Hospital in Denver.
When we arrived at Children’s we were seen by an infectious disease specialist who had reviewed Louis’s charts and already had a pretty good idea what was going on. Just for good measure we were asked four or five more times by various people about any potential that he’d been exposed to a dead rabbit. The specialist then explained he had Kawasaki’s Disease. (KD)
Kawasaki’s Disease is a rare inflammatory condition affecting the medium-sized blood vessels throughout the body. It causes a cascade of symptoms that may include rash, conjunctivitis, fever lasting more than five days, strawberry tongue (redness and swelling of the tongue), swollen lymph glands, and most concerning, dilation of the coronary arteries. It can also be very difficult to diagnose because it’s so uncommon and most of these symptoms are unremarkable in isolation.
Every now and then a child who has survived Kawasaki’s without having been diagnosed or receiving appropriate follow up care will die suddenly of a heart attack. This can occur months or years after the disease has run its course. When the coronary arteries dilate, or widen, it moderates blood flow causing the arterial walls to bulge out in some places. These deformities, called aneurisms, place people at a much higher risk of fatal heart complications.
Because of the danger of cardiovascular complications an ultrasound was made of Louis’s heart. At that point it appeared normal, but the doctor made some further observations that reaffirmed her diagnosis. She explained that the standard treatment was intravenous immunoglobulin (IVIG), which would need to be administered while he slept.
Immunoglobulin is a protein found in plasma that, among other things, temporarily boosts immune health. It’s indicated for a variety of conditions including KD.
We were given a nice room that evening and several people came in to begin the IVIG therapy. As they prepared everything, my wife noticed a syringe full of epinephrine, measured and plunged, among the other meds and equipment.
She spoke to the nearest nurse, “Why is there an epinephrine needle right there? I know what it is.”
The nurse explained that cardiac arrest a very rare side effect of IVIG. You realize in moments like that how much discipline it requires to think objectively.
Anyway, the treatment went according to routine. When it was complete a second ultrasound was made of his heart, this one showing that the left coronary artery was dilated. Because this was so concerning, Louis was given a strong anti-inflammatory medication via IV drip. Like the IVIG, this required him to stay in bed for several hours.
Trying to keep an IV drip in a toddler is a lot of work. Each time it required splinting his entire arm and sleeping next to him. My wife bore the brunt of it and probably didn’t get three straight hours of uninterrupted sleep during any of our four inpatient visits.
In an interesting aside, a group of medical students came in during rounds to see Louis and discuss how his treatment was progressing. Everyone was sensitive and respectful, but he was kind of a subject of academic interest because of the rarity of his condition.
Most signs of the sickness dropped off completely over the next several hours. When a third ultrasound was made it revealed (to our great relief) that his coronary artery had returned to a normal size without any lasting deformities. We were kept several more hours for monitoring and discharged with fairly extensive instructions about follow up care. It was surreal walking out through the lobby with our newly-healthy son, knowing that in the same building there were many others far less fortunate.
The fourth hospitalization was fairly unremarkable and worth mentioning only because it’s a testament to how rarely Kawasaki’s Disease is seen. It came several days after the discharge from Children’s and there’s a strong possibility it was unnecessary. Due to suspect lab results from a follow up outpatient visit we were referred to yet another hospital in our network. Our son received another panel of tests, was given another round of IVIG overnight, and kept another day and night for monitoring.
All the same, at this point neither my wife nor I gave a rip about whether the final hospitalization was necessary. We were too wrecked to keep thinking about it.
But we weren’t too wrecked to be overjoyed to return home with a healthy kid.
How quickly we forget. Depending on my state of mind, I either feel like this happened yesterday or ten years ago. Against my expectations, my perception of time has become increasingly warped as I age. It is a bit difficult to reflect back on, but I am surprised at how many of the most basic details I’m unable to recall. This concerns me for a couple reasons, one of which is that the ordeal was really a great blessing to us.
Experiences like this, as arduous as they are, have tremendous redeeming potential. They remind us not to take things for granted and put our day-to-day hang-ups in perspective. My son’s illness brought out a really affectionate side in him we hadn’t seen, and though he has likely forgotten the experience, it left a sort of footprint on his personality. I think he knows intuitively that he went through something really rough and one or both of us was within ten feet of him the entire time.
I remember while giving him a piggy back ride in the hospital hallway he unexpectedly leaned forward and rested his head on mine. He still does this when he’s feeling tired or vulnerable—he never did before. He’s fiercely assertive and independent natured, but he’s also unusually affectionate. And although I’m hardly a pushover as a dad, to this day I find it impossible to get more than a little pissed at him. And that's worth a lot, because, you know, he's a toddler.