Josiah's Journey

I just spent my fourth—and what I hope will be my last ever—night at The Children's Hospital.

For friends and family who have been keeping up with us through Facebook and phone calls, this entry is a recap. (Believe it or not, it’s an abbreviated version!) If you’ve only read my previous blog post, you know that Josiah, my 15-month-old son, had been sick with a fever since Tuesday, November 4th. After I wrote that blog entry I called our pediatrician’s office and spoke with a nurse who tried to assure me that “sometimes these things take time.”

My gut was telling me that "time" was not our answer. But I gave it one more day.

On Wednesday, I called and insisted that he be seen again. This time I made an appointment with Dr. R, whom we really like and has seen Josiah for most of his well visits. He took one look at my sick baby and I could tell that his gut and my gut were on the same track. He observed his cherry red, cracked lips and the faint rash on his puffy hands and feet and talked through some possibilities. He listened to me talk about how he had stopped eating, stopped communicating with sign language, stopped sucking his thumb or using his hands for anything at all, stopped walking or even sitting, and how he seemed to grow more stiff and pain-filled each time I moved him. He was reverting to infancy and it was crushing me to watch it happen. Instead of jumping to a new diagnosis, he suggested that we draw some blood and find out for sure whether this was viral or bacterial, and then we could move on.

Here, in my version of a nutshell, is what happened next:

At 3:30 Dr. R called me at home to say his blood count did not indicate that his illness was either viral or bacterial, and he urged me to take him to The Children’s Hospital for more tests. Right away. This was obviously devastating and scary, but I did my best to move forward in a hurry. Through my teary eyes I remember grabbing a bottle of water, a granola bar, my cell phone charger, and three diapers. I dropped Lucy at a friend’s house, thinking it might be a few hours...

The next few hours seemed like an eternity as they took the history of his eight-day fever and examined him repeatedly. I was grateful that John got my messages during his work meetings and was able to join us shortly after we had arrived at the hospital.

The blood draw itself was nearly the end of me. He was so dehydrated that finding a vein on his little body took repeated attempts by five different people over the course of an hour and a half. After two blown veins they went to their back-up plan and inserted a tube down through his nose into his stomach and began to push fluids to start rehydrating him (as he would take nothing by mouth). But in his weakened state, I didn’t even have to hold him down through it all. He simply laid there and moaned and looked at me with his pleading eyes. I was holding it together for his sake, but inside I was screaming “Dear God! Please let this one work!”

Even before the blood results were back, the doctors were preparing us for what they believed his diagnosis would be, which is called Kawasaki Disease. There is no single test for it. His extended fever, red and cracked lips, swollen hands and feet, and bloodshot eyes presented a good case for it, as well as the fact that there was no other reason for these symptoms. When his blood work came back showing elevated inflammation markers, all these factors came together and he presented as a classic textbook case of Kawasaki’s. We were relieved to know he would not be transferred downtown to the main Children’s Hospital campus, yet our doctors would work closely with the Infectious Disease department there to proceed with his care.

My baby boy was being admitted to the hospital.

Kawasaki Disease has no known cause. It was identified in the 1960s by a Japanese doctor, but it continues to remain much of a mystery in spite of ongoing research. It’s not viral. It’s not bacterial. And it’s not contagious. Children with Kawasaki’s are very inflamed on the outside of their bodies, and inflammation also occurs on the inside of the body, particularly in the blood vessels.

Treatment of Kawasaki’s involves at least one 12-hour-long infusion of intravenous immunoglobulin (IVIG), which would begin once he was well-hydrated. Aspirin is also used to protect the heart. They transferred us to a private room and hooked him up to a pulse oxygen monitor on his big toe, a blood pressure cuff on his opposite calf, heart and respiratory monitors on his chest and belly, and of course his whole left arm was taped up and immobilized with the IV in what we came to call “the club.” They began the IVIG drip at 11:00 pm, checking his vitals every 15 minutes at first, then every hour through the night and next morning. John and I agreed that he would go home to be with Lucy and I would stay with Joey to be able to nurse him as often as he needed. It was a long night.

By Thursday morning we saw some improvement. He was not as miserable and was more alert, but still had no energy to do more than just lie there on his back and cry with every breath that he was awake for, though he did begin to toss his head back and forth causing his hair to become like one big dreadlock knot. They were giving him Benadryl for the rash that was growing worse, and it also helped keep him calm and get some much-needed sleep.

One major concern with Kawasaki’s is that the inflammation in the child’s body will cause damage to the heart or arteries. They performed an Echocardiogram that morning, which took twice as long as the usual 40 minutes because Josiah was agitated, so they ordered that he be sedated to complete the examination of his heart. They also repeated the blood work to see if the medication was working. We were greatly relieved to get the results back from both of those tests that showed no damage to his heart and that indeed he was improving internally.

Thursday felt like a very long day, knowing his tests showed improvement, but seeing very little external evidence. His rash, in fact, was worse than when we arrived, as it now covered his arms and legs. One sign of encouragement we saw was that he was beginning to sleep on his belly again. That night was a bit better, and we both got about five hours of sleep.

On Friday he began to sit up on his own for the first time in over a week. Then, as if that weren’t enough, he started to grasp things with his right hand and move them! (His left hand was still taped up with the IV.) We added a strip of waffle to the mix of objects and he picked it up and took a bite—his first solid food in 10 days! To cap off the day, when I laid him down to sleep in the evening, he began to suck his thumb—again, a first in five or six days! We were thrilled to see such good signs of his return to normalcy.

Saturday’s blood work showed improvement again, and we started to talk about going home on Sunday. His rash was continuing to spread or fill in on his limbs, but it looked “less angry,” as our doctor put it, and it seemed to be bothering him less as it grew more pale. The determining factor for our release seemed to be that he would be able to stay hydrated, but he was still not drinking from a sippy cup, straw, or bottle. I was thankful that he was, however, continuing to nurse. They removed his IV in the afternoon—the last of the lines that tethered him to his hospital crib.

This morning Joey finally began to drink on his own. It wasn’t much, but they were confident it showed he was greatly improved and well enough to go home. We will have to return for a follow-up appointment with the cardiologist, as well as monitoring his blood until his counts return to normal.

Despite this being one of the longest and hardest weeks of my life, there are so many bright spots and so many things we have to be thankful for… doctors Amanda and Ryan at the hospital who knew Kawasaki Syndrome and made an accurate diagnosis… an angel named Tina who was successful in starting Josiah’s IV… being allowed to stay close to home and having excellent care… Darlene, our overnight nurse on our first two nights who was so gentle and compassionate and knowledgeable about Kawasaki’s, and who brought us a soft fleece blanket for Joey to sleep on and teddy bears for him and for Lucy… friends and family who visited and brought us food and kept us company… the Gildehaus, Gold, and Monroe families who kept Lucy occupied and entertained for whole days at a time… our friend DD who stayed with Lucy in the evenings so John could come back to the hospital… YFCI who let John out of his very important board meetings to focus on Joey… and the dozens and dozens of people praying for us and following our journey through updates on Facebook, phone calls, and messages—God clearly provided the strength for us to make it through this week!

We arrived home this afternoon, and we know that there is still a long road of recovery ahead of us. Joey is gaining strength, but his movements are still slow and labored. We are told to expect that he will be easily agitated and extra irritable as his body heals in these next few weeks. But we are seeing much more of ‘our Joey’ each hour, and for that we are praising God!

Thanks for sharing in this journey with us. I'm sure I'll be posting more thoughts and reports on Josiah's progress in the days and weeks to come...