Diagnosis: Kawasaki Disease

We had another rough night last night. Bright Eyes was running a high fever for most of the night and was very irritable.  The nurses were in and out of the room for the first several hours, and then he stayed very restless the remainder of the night.

The doctor came in this morning and explained everything we were to expect today.  She has been so wonderful with us; we're very thankful for her.  As she was leaving, the cardiologist came in to do an echocardiogram.  Kawasaki Disease is known to be one of the leading causes of heart disease in young children.  One of the sure signs of the disease is inflammation of the coronary arteries.  During the ECHO the cardiologist did find that Bright Eyes had inflammation is his left coronary artery.  From this and the rest of the symptoms that he has, both the cardiologist and our infectious disease doctor have determined that Bright Eyes does indeed have Kawasaki Disease. 

They just began the IVIG treatment and are slowly increasing the rate that he receives it.  At the moment he seems comfortable and is watching TV.  The doctors have all assured us that he will more than likely have no long lasting problems from this.  The IVIG will be given for 10 hours along with a very high dose of aspirin.  If all goes well, we should have a completely different little boy tomorrow morning.  They'll keep us for an additional 24 hours to be sure the fever does not return.  If it does, we'll probably be looking at another dose of the IVIG.

Our parish priest came by this morning and anointed Bright Eyes and brought hubby and I communion.  This definitely brought some peace to all of us. 

Zep stayed the night at another friend's home last evening.  She called and let me know that he had a tough night.  This morning his teacher emailed me and said she also noticed he wasn't acting himself.  She let me call him on her cell phone and I could tell he was crying.  He's complaining that his stomach hurts; I'm not sure if he's just nervous about what's happening or if he's not feeling well.  My mom went and checked him out and he's on the way to the hospital to visit now.  Please keep him in your prayers.  We forget how aware our little ones are. 

UPDATE...Zep and my mom showed up, and guess what???? He's running a fever of 101.5!  I may indeed lose my mind!!!  So, we're trying to figure out how to deal with that.

If all goes well...the next post should be a happy one!!!!  Dear Jesus, please let the next post be a happy one!!!

 The IVIG...hopefully our miracle drug!!!

Bright Eyes' horrible attempt at smiling with his new friend, "Paws"

Important Update...PLEASE PRAY!!!!!

The doctor came in and spent a good amount of time speaking with me.  Apparently she IS an infectious disease doctor (oops!).  She's ordered a whole bunch of additional tests.  We just returned from an ultrasound, and they'll be coming in to do more blood work shortly.  SHHH...don't tell Bright Eyes...he's going to freak out. 
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They just finished the blood work, and, yep, he freaked out! 
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At the ultrasound, he needed to use the restroom.  I placed him on the floor to walk and he nearly fell over.  His legs are completely giving out on him.  He's barely able to stand at the potty without his knees and ankles buckling on him.  When we got back from getting the ultrasound there were infectious disease papers all over the door.  Apparently they'll be running another test on him tomorrow, and if it comes back positive it's extremely contagious.  So, in preparation for a positive test, we're being quarantined.  I guess it's like being treated as guilty before proven innocent.

All the tests should arrive back by tomorrow afternoon.  At that point, if everything is negative, the doctor will probably determine that he has what is called atypical Kawasaki's disease.  I'm not going into all the specifics of the disease, just google it or click here .  The treatment will be a 10 hour IVIG, which is an infusion of blood antibodies, as well as high doses of aspirin.  I'm not really ready to talk about the lasting effects of the disease, please just go to the link for that information.

We need pray warriors more than ever right now...please pray that whatever is wrong with our baby that it is something simple, treatable, and without long-term complications.

Day Three...

Hubby talked me into taking last night off, so I feel much more rested today.  I've managed to avoid walking into all stationary objects.  My mother came into town this afternoon, which means hubby and I can be at the hospital with Bright Eyes together for a few hours.  I hadn't seen Zep since Sunday, so I checked him out of school to have a special lunch with me. 

As for Bright Eyes, we've had no improvement.  I think overall things have stayed the same or gotten slightly worse.  The red area has increased some and his face looks slightly more swollen all around.  During the night his fever rose to 103 and pretty much stayed around that point until this morning.  Hubby said that he was much more active during the early part of today.  He ate two strawberries and almost a full carton of milk.  Hubby and B.E. even sat up and colored a bit. 

Since then, he's taken another turn downward.  His fever is back up to 101; he's complaining of pain again.  His eyes are bloodshot, and he says that his legs hurt.  The doctor came in this morning and decided to stop the current IV antibiotic and switch him to a different one.  I'm hoping they'll get that started very soon (as I as typing this, they started it).  Momma bear may come out tonight when she makes her rounds again.  I'd really like him to see a doctor in the infectious disease department.  Everyone keeps telling me they see things like this all the time, which makes it all sound okay.  But if they see this all the time why are they having such a difficult time treating it???? 

In short, we'll be here for at least another couple days.  Mentally, I'm still doing okay.  I'm drained, but my spirits are okay.  I truly don't think that we're dealing with anything life threatening or life altering.  My main concern is that our sweet boy is in pain.  As any mommy knows, seeing your child hurt is worse than any physical pain you yourself could endure.

Thank you to ALL the people that have helped out during this time.  Someone snuck in B.E.'s name for Our Lady of Sorrows' (this is not even our parish) prayer intentions this past Sunday evening, there are so many prayers going up for our baby, our friends have helped by watching Sunshine and keeping Zep overnight, others have made meals and brought meals to the hospital, B.E.'s and Zep's class made get well cards for him, a friend snuck in behind me at McDonald's today and bought my meal, and my mommy gave up her week to be at our side.  We have such an amazing community of people who love us! 

Our vacation at Children's Hospital...

Well, here we are half-way through our second full day at the hospital.  Last night was rough, Bright Eyes woke up about every thirty minutes needing something, to go potty, a drink, or just a reassuring kiss.  It's 11:00am now and he's just decided to conk out after 8 hours of Disney Junior watching.  Can I tell you how thankful I am that they start showing kids' shows so early in the morning!!!! 

Breakfast came and he only managed a couple bites of a muffin.  I snuck downstairs to get him some ice cream, and he only ate a spoonful of that.  This is an improvement from yesterday though, baby steps.  The doctor came in at about 8am and said he was looking good.  She feels that the whole situation really isn't anything to be concerned about.  Apparently the large golf ball in his neck, that is now moving into his face, probably won't reduce in size any while we're at the hospital.  She said it could take weeks for it to go away.  As the fever continues to stay down, so will the pain...at least that's what she says.  I pointed out to her that since we've been here, the area continues to get more and more red.  This was the one area that concerned her.  We'll have to stay until the redness goes away.  They've discontinued his IV fluids.  I'm tying my best to get him to drink as much as possible, which isn't much.  They're hoping in the next day or so to discontinue the IV antibiotics.  The kicker is that he has to be able to take the oral form of the antibiotic, which apparently tastes horrible.  If he's not able to take it, then we're stuck here for 10 days or so.  I'm praying he'll be a trooper about this.  But if you've kept up with my blog and stories about my 2nd born child, stubbornness is one of his most perfected attributes. 

So...that's the update in a nutshell.  I'm a walking zombie.  I literally ran into a dispenser of spoons in the cafeteria this morning.  Mentally, I'm really okay.  I've found myself not being overly worried about what's going on.  I'm just really, really, really tired.  Hubby has offered to switch with me for the evening, but there isn't an army that could drag me away from being with my baby boy right now.  I much rather be sleep deprived taking care of him, then to be home fully rested worrying about him.

Side note...thank you for all the phone calls, emails, and FB messages!  They mean the world to me!  I apologize for not answering my phone or messages.  Forgive me for not being much in the mood to talk to anyone right now. 

Still telling myself...it could be worse

A couple days ago, I was sorting through my LITTLE problems while tying to focus on how hard life is for many of those around me right now.  After the last two days events, I'm once again feeling called to examine my hardships and not take the "woe is me" approach. 

We’re in the hospital.  We got here about 11pm last night and they admitted Bright Eyes at 6am this morning.  They ran a CT-scan and found that he has a bunch of infected lymph nodes on the right side of his neck.  He’s currently hooked up to an IV to receive antibiotics.  Hopefully this will bring down the swelling.  About two hours ago his fever spiked to 103 again, so that means we’ll at least be here until tomorrow morning.  The lump has not reduced any in size and seems to be turning a bit red.  I’m not really sure what happens if the antibiotics don’t work, just trying to take it one step at a time. 

I’m going to try to stay off the phone while up here.  Bight Eyes is very lethargic, and I don’t want to wake him up.  Please call hubby for any updates.  And, it goes without saying, we’d sure love your prayers!!

My “God Wink” during this event was when we arrived to the emergency room.  It was just Bright Eyes and I.  As soon as I sat down I noticed a teenage girl sitting close to us who had multiple stab wounds on her chest and arms.  She had brought in her entire family (20 plus) people with her and they were all discussing the events.  I was desperately trying to shield B.E's eyes from that when from the other direction walked out a teenage boy being led outside in shackles and handcuffs.  It was very surreal.  I couldn’t help but pray for both of the teenagers, how sad this world is for them.  But…I was terrified, and wanted OUT of the waiting room.  Within the hour we were called back to triage and they did B.E.'s initial assessment.  He tested very low for his oxygen and had a rapid heartbeat.  This bumped us up to immediate status, so we were whisked right to a private room to await the doctor.  Five minutes later they tested his heart rate and oxygen again…they were perfect!  God was on my side in that triage room…he knew I needed us to feel safe!

I'll try to update the blog occasionally as things change.  It looks as if we could be here for several days. 

St. Gerard, who, like the Savior, loved children so tenderly
and by your prayers freed many from disease and even death,
listen to us who are pleading for our sick child.
We thank God for the great gift of our son
and ask him to restore our child to health if such be his holy will.
This favor, we beg of you through your love for all children and mothers.
 Amen.

Putting things into perspective...

These last couple weeks have been a blur.  Our Catholic schools were out last week due to a teacher's conference, so we had a camping trip scheduled with some good friends.  The day before we were to leave, I checked the weather, and we quickly made the decision to postpone the trip to later in the week. 

On Wednesday evening, I sat paralyzed in front of the TV.  I would get up occasionally and pace or yell out from fear.  My phone was glued to one hand and my rosary in the other.  The scariest sight I've ever seen was playing on our TV.  I'm a huge fan of Discovery Channel's Storm Chasers, but this was nothing in comparison.  The images I was watching were live, and the area and buildings being destroyed were all ones that I was familiar with.  Not to mention, that my sister-in-law and her entire family were in one of the buildings I could see just beyond the tornado that was racing across the screen.  We spent the better part of the next couple hours in the closet under the stairs as Mark Prater and James Spann gave warnings of tornadoes headed directly our way.  One of the scariest moments for me was walking outside and literally seeing debris falling from the sky, debris that had traveled all the way from God knows where.  By the grace of God, the area we live in was untouched by the storm.  The only damage we saw was a small tree and some shingles down.

After a million phone calls Thursday morning, we finally got in touch with my sister-in-law who was fine.  Our friends (the ones we were supposed to go camping with), hubby, and I made the quick decision to head down to Tuscaloosa to help family who had a tree on their roof.  I dropped hubby off to work and traveled 10 miles (over an hour drive) to get to my SIL's home.  For the next two days, hubby helped in any way he could, and my SIL and I drove around dropping off donations.  The destruction in this city is unimaginable.  You can stand in front of an empty space and not even realize that a house was ever there.  The spirit of our wonderful state is being made abundantly clear through all of the clean up efforts.  I've never seen so many people volunteering their time and money to help strangers.  It's a beautiful thing to witness!

And then this week happened...and by the way I'm dealing with it, you'd think that I, myself, just lost everything in a horrific storm.  Sunday, Bright Eyes took a dive off a fence and hurt his arm.  On Tuesday and then Wednesday I spent several hours at doctor's offices to discover that he'd fractured it.  Also on Tuesday, a different doctor appointment for Sunshine revealed that she's going to have to undergo a probing of her left and right eye tear ducts in order to unclog them.  Hopefully, they'll only have to do it once...but it may be something we end up repeating several more times throughout her life. 

So, I've been whining like a big baby.  My house is a wreck, I can't keep up, I'm feeling disconnected, and basically I just want to curl up in my bed and nap for the remainder of the week.  Last night, I recruited my hubby into my own personal intervention.  I had him write out an entire three day schedule for us thinking this would kick my bottom into gear.  And then this morning, Bright Eyes wakes up with a stinkin' fever!!!  If it wasn't for the broken arm, I'd dismiss it and let it run it's course, but nope, back to the doctor I go.

Do you see how pathetic I am????  Big ol' whiny me has three wonderful children, an amazing husband with a job, loads of family and friends who made it through devastating tornadoes unharmed, a home to keep cool in, and a working vehicle to travel to all these doctor appointments in.

Today I'm making a choice!  I'm choosing to rejoice in my "tragedies" of the week.  Because when I look at pictures like the one below, I know that I am truly blessed and that there are thousands of people in the south who would give anything for my LITTLE problems.

May 6th, 2011

A daddy and his daughter...

May 5th, 2011