Thursday, January 8, 2009

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.


  1. Oh my goodness Lori. I have tears in my eyes. We were in the hospital with Micah last Spring - I remember that utterly hopeless feeling - and the IVs - oh, it's so horrible. I love the image of God's hand washing your son from head to toe. Beautiful.

    When we were in the hospital for dehydration with Micah (inept first time parents :) we found out about a more serious condition that can be treated. We have always felt so thankful that we caught it. I am thankful for that amazing doctor that diagnosed your son. What a blessing to have her arrive. And such sweet pictures. Poor little babe. But, I love that he's smiling so big in the current pictures!
    (sorry for the babbling!)

  2. What an amazing story Lori. I'm so happy to hear the Nicholas is now healthy. I can only imagine how hard it must have been to watch your sweet baby go through all that.

    Best wishes for the New Year.


  3. That was such an amazing story - about love and devotion a parent has for a child and Parental love and devotion that Our Father has for His children.

    Thank you for sharing so much of yourself -- your sensitivity, your passion, and even throwing in your typical humor... all of that makes you you and even though some say I don't know you, what I know of you I love already!


  4. I remember it like it was yesterday. That was a scary time. I think something always seems scarier too when you've never even heard of it before. Thank God for awesome doctors!

    Twilight reference-you kill me!

    I need to come over and dance with Tessa. I think she could show me some good moves.

  5. Wow, thank God for Dr. Truebe! Amazing story... with a happy ending!

  6. You show what an amazing Mommy you are in this post. I am so glad that Nicholas' heart is so perfect in every way...what a relief to know this.

  7. Lori - what a beautiful story and witness of His mighty hand which SAVES! What a beautiful witness of His mighty POWER!

    God bless you and your beautiful family! The children are truly precious! I know the feeling you are talking about in Tessa - I have seen it wash over many of our adopted children too when the morning comes and they are home forever.

    Love and blessings,

  8. Wow... I had no idea you had gone through that. What a beautiful testament to how well he's doing now! Praise God!

  9. Oh, Lori, this is an amazing testimony! WOW! Thank you for sharing it with us! Your description of the Holy Spirit resting on him and breaking the back of his illness moved me to tears. Praise God that He sent the doctor to you with the wisdom to know the root cause of his fevers! And Praise Him that Nicholas is well!

    Also, it was a great idea to clarify that Jett Travolta's death wasn't attributed to Kawasaki's because otherwise people may have been terrified for Nicholas instead of amazed at God's goodness! (Poor John & Kelly... losing their precious son whom they obviously loved wildly, and protected and cared for so beautifully. My heart goes out to them in this heartbreak.)

  10. Wow! What a rough start. :( Thank God for His healing hand and that He brought you guys through it! I hate seeing pictures of suffering babies. :( :( My oldest suffered a lot when she was a baby too with her various problems. It's misery. :(

  11. I am so glad that he is fine now!!!!!! I can't imagine what you went through with him as a wee one...

  12. Thank you. Again a great post. That must have been heart wrenching to not know what was wrong, and then watch his little body poked and prodded. you did a great service to the disease because look at him now... so healthy, strong and vibrant. You guys are awesome. So is he.

  13. What an amazing post. So painful - but such a beautiful time where you really experienced God taking care of your precious boy.

  14. That is the worst, seeing your helpless baby in the hospital, knowing there is nothing you can do but trust in the Lord and pray. Thank you for sharing. It is so good for others to know that children not only survive but thrive and things will pass. We went through something similiar with our second child, Reece. When he was 5 months old he was diagnosed with a cystic hygroma that was in a place that could choke him. So we banked blood and he underwent a 15 hour surgery at Georgetown Hospital, where we have heard his case is still sited in medical books. It was so frightening and at that time we could hardly believe we would all get through it. But, with God's grace we did. I wish I had a scanner to put his photo in because photos like yours and ours of Reece are so sad but bring so much hope too.... Anyhow, thanks for sharing. You're a blessing to this adoption community!

  15. Oh my gosh, I had no idea N went through that. I'm so glad he's OK now. You have an amazing family!

  16. So glad to hear he had a good check-up. How brave he looks with all of those machines hooked up to him! What a scary thing to go through as a little baby - I love your description of both kids going from lost to found... beautiful!

  17. You are amazingly strong to share this emotional story with all of us. I'm so glad we've gotten to know each other. God knew what he was doing when he blessed you with both your children. I'm so glad they're healthy and happy! (Our second had difficulty breathing and was jaundiced, so I remember that feeling of helplessness when such a tiny baby is hooked up to iv's and such. My heart goes out to you even though everything is fine.)

  18. Crying big huge ugly tears right now. I don't know why I didn't catch this post earlier.
    You are extraordinary. I wish I had words to tell you how amazing I think you are. How amazing your little man is. I adore you all.

  19. How did I miss this? Such a beautiful testimony to God's goodness and how He protects us in the midst of dark days. Thank you for sharing and yay for the good report from the Dr.

  20. love the 2nd pic! what a trooper!

    and a big thanks for commenting and joining in the fun over at