Sunday, June 9, 2013

Kawasaki Disease- A nightmare I never expected Part 1

Kawa What??? - I'm sure your thinking? Some of my friends & family have a brief understanding of Kawasaki now because my youngest child came down with this awful disease!!

First I will give you our story of what happened & then I will give you info on where to learn more & what to look for! This will probably be a 2 part blog because it has ALOT of detail & info! I am trying to make others aware & prepared because This is SERIOUS if it is not caught & the child is not treated it can cause serious issues with the child's heart! You have a 10 day window to receive treatment we caught it on day 5!


My nightmare- Saturday May 24 my youngest son Carsen who turned 1 on the 13th of May started running a low grade fever it was between 99.5 & 99.7 I attributed his low grade fever to his teething he is getting some molars I could feel them & assumed that was the cause.

Sunday May 25- Carsen started running a higher fever later in the day into the night & he was crabby & could not sleep he I assumed Ear infection at this point his fever was now 101 he was messing with his ear & only could sleep if on me I was alternating Tylenol & Motrin to make him comfortable & planned to take him to the Dr. in the morning!

Monday May 26- I called the Dr first thing in the morning only to realize they were closed because silly me I forgot it was Memorial Day! Well I knew we couldn't wait till the next day my baby was in pain & really not feeling well or sleeping, he was so tired he started to get red blood shot looking eyes. So off to Urgent Care we went.
  We were admitted fast & the Dr. looked in his ears she said they were red & said she was going to put him on amoxicillin. So off to Target we went to fill his script!
  Phew my baby will now get some relief or so I thought! Monday night was awful Carsen barely slept he was up every hour & screaming He had had 2 doses of his antibiotic now & it was not helping at all & his fever was still at 101-101.6

Tuesday May 27- Carsen has his 3rd dose of amoxicillin and still seeing no relief he all of a sudden breaks out in a rash on his legs butt & a little on his arms! I start freaking out thinking he is having an allergic reaction to the medicine my brother & mother are allergic so I assume he inherited the allergy. Immediately  I call his Dr office & they tell me to bring him straight in to see his PA.

His PA comes in and looks at his rash she says that she see's my concern but it does not look like a reaction, she then checks his ears to: Inform me they are not infected nor should he have been put on amoxicillin but unless you are used to children's ears the little redness a normal adult Dr sees can be mistaken for ear infection. She informs me to stop the amoxicillin.

She then continues to look him over he still is running his Fever, ears are not infected his Rash does not resemble that of Strep. She asks me about his Red Blood Shot Eyes. She asks me about his Very Red Lips (they look as tho he'd been drinking red Kool-Aid). Which we do not allow in our house! & then she say's I think he has Kawasaki Disease! & I shutter!! I remember a Grey's Anatomy episode to raise awareness of this disease a RARE disease a Scary disease!!!

His PA said that she was hoping he maybe had a viral form of pink eye that can produce fever & rash but she does not feel that is the cause so she requests another appointment be made with her for in 2 days because if he still has a fever that would be 5 days of a fever of 101 which is common with Kawasaki. While there she also did a white blood cell count & would take another on Thursday. So we wait & continue Tylenol & Motrin to help comfort him.

Wednesday May 28- No sleep at all I'm exhausted & he is miserable I can not set him down his feet are now swollen & he refuses to walk when he had been walking for over 2 weeks & all I can do is cry! I'm scared, I'm terrified of what is going to happen to my child & I start googling! No one knows much about Kawasaki or how a child gets it. It is looking more likely to be an auto immune disease. It is not contagious. But they just don't have enough info on this disease.

Thursday May 29- Back to the PA she draws more blood his white count is up more still Fever, Red Blood Shot Eyes, Red Lips, Rash, Swollen Feet! She is positive it is Kawasaki. She calls in another Dr & he also finds a Lymph Node that is more swollen & he as well feels Kawasaki. So then they start calling out to a hospital in Greenville NC which is 45 minutes from us. They are a Children's Hospital with a team of specialists! He is going to need to be seen by a Pediatric  Cardiologist as well!

So I text a great friend of mine & ask her if she could please watch my other 2 boy's so my husband can go to the hospital with me & she says of course (I could have kissed her) Seriously she has no idea how much I appreciated her willingness to help me. I needed my husband because I was so terrified! Home to pack a bag & say goodbye to my other babies & off we go! My husband & I's hearts in our stomach's so scared for our baby. We arrive & immediately he is weighed, measured, temperature is  taken were now rolling with 103. He is hooked up to stuff given meds and numbing cream placed on his hands for an IV!

Dr's are coming in left & right & I am having to go over & over day by day my son's symptoms  I talked to 4 different Dr's in the course of an hour. They also believe him to have Kawasaki.Then comes the IV that was so depressing watching my little baby fight so hard he was so upset because he had to be held down luckily when they stuck him with the needle he didn't seem to flinch so the numbing cream worked! Blood is drawn a pee bag placed on him to get a urine sample & I just am holding back tears looking at all this on my baby.
.
Blood work comes back with elevated counts all pointing to Kawasaki. They don't have a test yet to actually determine Kawasaki but they are working on it. But with his elevated levels & all his symptoms the Team of Dr's are all convinced he has Kawasaki the one Dr even told me should could take a picture of him & slap it into a text book next to the word because he looked exactly like pictures of kids who have also had it & all the descriptions for this disease.

Then starts the treatment how they treat Kawasaki is a round of IV meds called Intravenous immunoglobulin for short IVIG! What is IVIG you ask well... it is a blood product an immune protein. They also give a high dose of baby Aspirin every 6 hours! the baby aspirin had to be crushed & mixed with juice & given through a syringe.
  They give IVIG through the IV over a course of 8-12 hours as a slow drip every 1/2 hour though they increase the flow when we hit a certain point that night he started shaking & his fever rose. They decided to give him some Tylenol & decrease the rate of the drip. Finally they got that under control because holding my shaking baby was so scary. Poor thing just felt awful! I held him constantly unless it was time to eat or If I got him to pass out I laid him in the crib so I could use the bathroom or take a quick shower.                       
                                                                    Night One


I will end this part here and have the rest tomorrow as I said before it is a lot of info! Stay tuned & in the mean time here is the KD Foundation page you can also receive info from
http://www.kdfoundation.org/

Till Tomorrow
-Candice-

4 comments:

  1. Candice! I was just doing my usual KD searching and came across this blog. Then I saw the name and recognized it immediately as one of my best supporters. Did you tell me you had a blog and I spaced it? If so, I'm sorry! Thanks so much for writing about your experience, even though I know how hard it is. After everything I have read about this disease, each time I read a new story it pulls on my heartstrings as much as the first one. Can I share on my pages? - Leah, Desperately Seeking Kawasaki

    ReplyDelete
  2. Contact me! I just learned of a testimony about this disease and how an essential oil helped. It completely helped this lil' babe in 7 days. Christaarola@gmail.com

    ReplyDelete
    Replies
    1. Thanks Christa Iactually have a good friend who turned us on to DoTerra we love them & they have helped wonders :) oils are Amazing!!

      Delete