Tucker - Kawasaki Disease

If someone told me on the day that my sister had her first child that I would be scared of losing my smallest munchkin by the end of the week - There is NO WAY I would have believed them.

But that is exactly what happened.

The story for those of you who want to know:

THE BEGINNING:
Tucker ran a low grade fever most of the weekend.  Nothing over 100 degrees and he was playing and acting completely normal.  Chris had been traveling for the past couple of weeks so his Dad was in town to enable me to be with Mandy on Monday morning when we were expecting Baby Mac's arrival. :)  I asked Bruce to keep a watch on Tucker just to make sure his temp didn't escalate - of course Monday afternnoon it did.  On my way home from holding my new little nephew I went ahead and made a pediatrician appointment for Tuesday afternoon.  I figured he had a "fever virus" (whatever that really is) or possibly an ear infection (it's just that time of the year).

At dinner Monday night Tucker told me "I gots ta bump on my neck".  I felt it - an enlarged node.  Nothing big...no worries... just figured it was an infection.  A quick fix.  Skip to the middle of the night; the "bump" was huge.  Tucker's neck was so painful...he just whimpered in his sleep.  Fever got up to 103 so first thing that morning I called the pediatrician and they got us in.  Diagnosis:  Double Ear Infections and a Lymph Node Infection.  Prescription for Augmentin and things to watch for "just in case" he got worse.  We went home.  He slept much of the day.  He mostly just wanted to be held.  I was alternating Tylenol and Motrin but we couldn't get his fever under 101.

Tucker slept with me Tuesday night.  His fever spiked at 104.6 at 4am.  I called the After-Hours line and talked with a nurse.  Since he already had taken 2 doses of the antibiotic she suggested that I call my pediatrician back at 8am.  4 hours??  Seriously??  He was miserable.  We were both crying.  I felt helpless...and scared.

WEDNESDAY:
At 8am, I called and they told us to come in.  They drew some blood and sent us to the Children's Hospital ER for a CT Scan.  They were looking to see if the lymph node had an abscess.  At this time I had no idea that if they did find an abscess that we would be heading into surgery.  I called Chris and told him to be on standby. (He was 4 hours away and feeling more helpless than me) :(  The ER took us straight back.  They started him on an IV of fluids and Clindamycin.  We had a CT of his neck - Praise the Lord it was all clear!  Tucker's temp had dropped.  They diagnosed us with an infection and sent us home with a script of Clindmycin.  Skip to home.  I dropped Tucker with Bruce (Chris's dad)  so that I could get the prescription filled.  By the time I got back home, Tuckers fever had spiked again to 103.8 and he was vomiting.  I called the pediatrician.  She called Children's Hospital.  And we are on the road again.  This time with an overnight bag.

We arrive at Children's and get admitted.  The nurses are GREAT!  The doctors are GREAT!  But no one has a CLUE as to what is going on with my little man.  We stay the night - they trace the outline of his lymph node to measure the size and they diagnose him with "Lymphadenopathy".  An infection of the lymph node.  We start yet another IV in his little pudgy hand and we wait for the medicine to kick in.  It was a long night.  His fever refused to go under 101...most the time it hovered around 103.

THURSDAY - Fever Day 4:
Morning came; along with the attending Physician and about 6-7 Residents ready to check out his poor little swollen neck.  They look.  They touch - he is super sensitive.  He is in a lot of pain.  The Tylenol/Motrin is just not helping at this point.  His tongue has developed a thrush-like whiteness on it.  They decide to keep us another night for observation.  I go to my smart phone (Thank the Lord for technology!) and start my own research.  My "mom intuition" has kicked into full force and I am on a hunt to figure this thing out.  Chris arrives around lunch - I am so thankful to see him.  I'm exhausted, emotional and completely scared.  I am so thankful that I don't have to do this alone.  Tucker tries to manage a smile for Daddy but he is just too pooped and feels so terribly bad.  Chris went home to be with the big boys Thursday night to make sure they were doing okay.  So thankful for his Dad who took care of everything with the big kids.  He even went on a field trip to the zoo with Tanner! :)  I needed Thursday night alone.  I needed to cry - to completely let go.  I had no idea what was around the corner.

FRIDAY- Fever Day 5:
Morning comes early.  Tucker is not any better.  Fever is still 103.  He's beginning to get this weird rash all over his body.  It comes and goes with his fever.  We are told his tonsils are the size of ping pong balls.  No wonder he is gagging and vomiting when we try to put 2-3 drops of tylenol into his mouth.  He is beginning to swell.  They drop his IV fluids back to see if that will help.  It doesn't.  The swelling only gets worse.  He is really lethargic.  We had a few visitors but he didn't know they were there at all.  Through his IV he is now getting: fluids, clindamycin, benadryl and prenisone.  Orally he is taking Tylenol, Motrin and Nystatin.   He is just so very sick.  It breaks out hearts.  We are helpless, unknowing and everything is out of our control.  The doctors still think it is a virus.  The lymph node is looking better but he's got all these other new symptoms and they can't control his fever.  We are told to plan on staying through the weekend.


SATURDAY:
It's been 6 days of fever.
We've spent 4 days in the hospital.
We now have a diagnosis:  Kawasaki Disease


WHAT???  What is that?  Who gets it?  What causes it?  What does that mean for my little angel who's so terribly sick?  What is the outcome?  What's the prognosis?  Those were questions that we were trying to get answered.  Unfortunately not a lot got answered.  We did learn that Kawasaki Disease is a rare childhood illness that affects mostly children under the age of 5 and mostly boys.  No one knows if it comes from a virus or an autoimmune disorder (Hello?? alarms were going off since I have Lupus). Kawasaki Disease affects the mucus membranes, lymph nodes, walls of the blood vessels, and the heart.  Tucker's tongue has turned into a "strawberry tongue"; its bright red, beefy with lots of little bumps.  The whites of his eyes are now just red - the vessels are all so swollen.  


Bottom line:  SCARY.

Treatment calls for IVIG therapy which is a 12 hour infusion through an IV.  Since Tucker has not ingested anything since Monday we can't stop his IV fluid so they have to place another IV into his foot.  This little baby is so tough.  He has endured more pain and agony than I wanted him to endure in a lifetime.  At this point, I'm numb.  I'm on the verge of a meltdown but have to keep it together for him.  Chris is my rock.  He keeps reassuring me that everything is going to be okay but I'm not so sure he believes it himself.


We start the IVIG Therapy treatment.  And we wait.  We are told that he should be a different little boy in the morning.  Our prayers are just that.  


SUNDAY:

We wake.  Tucker seems a little better.  Not that miraculous change I was hoping for but better.  We were able to give him a sponge bath and he actually asked for something to eat.  Those were the first words that he had spoken since Wednesday.  He wanted one of my Grandmother's pecan tassies.  Now if you've never had a pecan tassie, you might not understand...but Tucker does.  He ate two!!  We have an echocardiogram done to check for damage of the blood vessels in Tucker's heart.  All looks great! Temp stays down most of the day so we are hopeful.  We have to be 36 hours fever free to be in the clear.  Unfortunately, it doesn't stay down long. :(  By 9pm it's spiked to 101.5.  The IVIG therapy failed.  On to plan B.


MONDAY - Fever Day 8:

Monday morning comes with a new attending physician: an immunologist. He confirms that the IVIG treatment failed.  Protocol states that if the first IVIG fails, you should do a second treatment.  Our physician says if he didn't respond to the first one..its likely he won't respond to the second one so why put him through it?  We are really liking this guy!  Instead, he wants to move to the third treatment: an infusion of Remicade and Aspirin therapy.  Along with the treatment comes new risks but also hopefully healing for our little dude. We are prayerful.  We are feeling God's peace.  We are waiting for results.  But seriously!  This just plain ol' sucks.
The infusion takes 4 hours.  He has to take an adult aspirin every 6 hours.  I don't know if you've ever tried to crush an adult aspirin and feed it through a syringe to a 2 year old...but let me tell ya "It ain't easy!"  The nurses tried everything from apple juice, strawberry milk and ice cream.  It was a battle each and every time. We got it in and most the time it stayed in but there was not a single thing fun about it. 
  
I have no idea what would  happen if this treatment did not of work.  I don't even want to think about it.  It's bad enough that it's been 8 days of fever.  Everything I've read says the risk of coronary problems gets worse after day 10.  In my mind - we've got 48 hours.


We had a visit from 2 Pediatric Rheumatologists Sunday night.  They were hopeful that the Remicade would work "if this was Kawasaki Disease".  What did they just say?  They think this could be something ELSE?? Really???  That's when Macrophage Activation Syndrome was mentioned.  I immediately looked it up "a severe, potentially life-threatening, complication"  That was it...  I couldn't take anymore.  I was officially terrified.


Monday night was spent in a lot of prayer and a lot of worry.  I know those two things shouldn't go together -but if I want to be completely honest (and I'm really trying).  That is EXACTLY how that night was spent.


TUESDAY:
I've got my Tucker back!!  Thank you Jesus!  He is up and talking and eating and laughing!  Truly a miracle that we all  just witnessed.  The nurses are ecstatic!  The doctors are thrilled!  All Tucker wants to do is take a wagon ride to see all the Christmas Decorations that are in the lobby and to check out the clowns.  But first...we have to do some more tests.  We have an ultrasound of his liver and gallbladder and he has a ton of blood drawn.  So we wait.  We wait on another possible diagnosis.  And we pray.

Tuesday was a scary day but a great one.  We found out that he did show some small signs of Macrophage Activation Syndrome early on but that he was all clear now.  Everything checked out.  We also learned that the he was responding well to the Remicade treatment and that his fever should be gone completely.   At 4pm we were told we could either stay one more night or we could go on home.  Guess which one we picked? :)


THE LATEST:  
It's been 2 weeks since we were discharged from the hospital.  Tucker continues to improve each and every day.  He takes a baby aspirin daily in case of any coronary problems.  We've seen our pediatrician twice and checked his labs.  Some things like liver enzymes and platelet counts are still high but we are hopeful that they will improve with time.  We have to revisit the cardiologist on Dec 13th to repeat the Echocardiogram.  I think once we hear that it is clear we will be able to breathe a little easier.


We are so thankful to our family who stepped up and took care of the rest of our lives so that we could concentrate on Tucker during this time.  I truly don't know what I would've done without their presence; along with all the love and support.  Our friends are simply amazing.  They called, visited, brought dinner and loved us through it all.  


But mostly what got us through the toughest of times were all the prayers. I've heard from so many people about people from all over the world praying for our little Tucker.  From New York to Brazil I could truly feel those prayers.


Chris and I stand firm in our Faith. We have no doubt there is a God who loves us and wants the very best for us.  In times like these, its sometimes hard to wonder why this would happen.  Why would this precious little child have to go through so much pain?  Why would God's followers have to bear such a burden?  I don't know that answer. All I do know and all I can trust is that He has a plan for our lives.  For my life..for Tuckers life.  That's what faith is...thats what faith looks like; when everything is knocking you down...you have no control..and everything is unknown...where do you turn?  Who do you trust?  We are choosing to trust in the one true God who saves.  We are turning to Him.  
And you know what?  He hasn't let us down yet. :0)