Kawasaki's disease has a familiar face!

Kawasaki disease (also known as lymph node syndrome, mucocutaneous node disease, infantile polyarteritis and Kawasaki syndrome) is an inflammation (vasculitis) of the middle-sized arteries. It affects many organs, including the skin, mucous membranes, lymph nodes, and blood vessel walls, but the most serious effect is on the heart.

You may have seen recently in the news the words; "Kawasaki Disease" mentioned in the wake of the tragedy of Jett Travolta. Let me be clear, Jett did not pass from it, but by another illness or complication of another illness from what I hear.

Most people don't know someone that has Kawasaki disease... till now...

When Nicholas was just three months old he began having high fevers...

We went to the Dr.'s several times and they kept saying, let's wait and see if it clears up w/Tylenol etc. The fevers never stopped. He had no other symptoms (coughing, sneezing) that would lead us or the Dr's to think it was a cold/flu. The fevers were 104 area and he didn't sleep for almost a week. MP and I took turns to sleep ourselves and were happy to get two hours at a time.

I could write a long, long post about this - I kept a journal at the time of what was going on daily with him.

After almost a week of this it was apparent that something wrong was happening. At one of our last Dr's appointments during this time the doctor sent us directly to the ER where he followed us and there were nurses waiting for our arrival. The main suspicion at that time was meningitis. It had to be ruled out. And so a spinal tap was ordered on the spot. They wanted us to leave the room and we refused. It was horrible. They had to call nurses down from the NICU unit to help. This is not a common test done or an everyday thing done for a three month old even at a pretty large hospital like the one we were at. The results were negative but they admitted him not knowing why he was so sick.

After a day or two in the hospital all other tests came back negative as well. And let me tell you, they were in and out at all hours of the night pulling blood out of him. They were waking him up every hour on the hour to take his temperature and do other things like adjust his IV. And an IV isn't an easy task on an infant. His veins were so small. It was excruciating to see them try and fail over and over to get one in or to re-do one that had worked hours earlier. I wanted to kill someone.

He was discharged as there was nothing they could pinpoint. A day later he was re-admitted by an on call doctor at his practice. She was new to the practice. Her very recent residency was at Children's Hospital in Boston. They have a Kawasaki unit. She suspected it right away and admitted him again. She ordered and IVIG (transfusion) and it came to his new room several hours later.

I remember so vividly when they put the bag on the IV hook and started the drip. He was exhausted from the horrific ordeal and almost never slept, partly because they wouldn't leave his little body alone long enough. And so we watched, hoped, prayed and waited. For what, we weren't really sure...

MP and I watched the IV drip - about an hour into it we saw this thing. I've witnessed it only twice in my life. It was God's hand washing him from head to toe. You could literally see the normal color return to his skin. You could see his blood red eyes turn back to brown. You could see his lips turn back to a normal pink shade from the red that he'd had. And most of all you could feel his body calm. Our little boy fell into the deepest sleep I've ever seen. It washed over and through him - words cannot describe witnessing it. (We saw a similar thing happen with Tessa at Bole airport in Ethiopia on our way home. She went from lost to found.) It was so amazing. And then, and only then did I finally break down and weep. I left the room so I wouldn't wake his resting body. I made some important family phone calls and cried in the hallway for quite a while. I knew it was over. I knew it was over - it HAD BEEN DONE.

He was there for a few more days - but it was over and we didn't care about anything else but going home.

While in the hospital on of the doctors that was called in to treat him was a cardiologist named Dr. Johnson. He is/was the most wonderful souls and treated/treats Nicholas the way you rarely see.

Why this post? Today was another check up w/Dr. Johnson. A few tests and then a briefing. All is normal - he's in terrific and normal health! We knew that but we have to keep going because it's such an unknown disease that they want to keep track of their patients and progress.

We'd also changed his primary care physician (from that moment forward) to the amazing woman Dr. Truebe who was smart and quick enough to make the diagnosis. If left untreated or undiagnosed serious heart complications would have surely been inevitable. Very serious. We were blessed to have this team gifted to us... Luck? Nope!

Here are a few pictures of those horrid days...

Our little baby boy. Just three months old - the pain and confusion for him... you can even see his red eyes and one of the bruise on his little hand. His lips were also abnormally red.(Normally I'd make a Twilight reference here but it's not appropriate. But I guess I just did.)

In the hospital... poor peanut with the stupid hand brace to hold the IV in.

In the hospital...

Don't mind my serious ugliness. We NEVER left. We took turns to go and take the dogs out and shower - very briefly. Thank goodness we lived in the city then. Or I should rephrase that, Thank God we lived in the city then. With a great hospital and two awesome practices only minutes from our home.