In March of 2013 our youngest was diagnosed with Kawasaki Disease, It was one of the most frightening experiences we have had to go through as parents. My hope is to raise awareness on the disease. If not treated, Kawasaki can lead to aneurysms, heart attack and death. Please take a few minutes to educate yourself so you are aware of the signs.
Kawasaki Disease (KD) is the leading cause of acquired heart disease in children. Once they get sick, you have a ten day window to get the treatment to save their heart, but children often get misdiagnosed as did Grayson.
These are all updates that were given during Grayson’s hospital stay, they are raw, unedited, bad grammar, spelling errors, and I am OK with that!
How to begin a post like this, I’m not really sure. The last week I have seen my darkest moments, despair, hopelessness, my faith and strength tested, spirits crushed…..
Our sweet and spunky Grayson was diagnosed with Kawasaki Disease. We have been at Rady’s Children’s Hospital in the ICU with the best team of doctors and nurses. Every hour changes, sometimes for the best, sometimes for the worst, his heart is fighting, he is in pain, lots of it and I can’t take it away, it’s not fair.
This song is for our Grayson because we will wait, we will not leave, we will be strong. God will fix your flesh, your heart, your joints and eyes. As the wind blew this horrible disease into our lives it will just as easily blow it away, we will not give up, we love you!
Timeline of events:
Mommy; “I just want to be happy again, I want to go home”
~Soon baby soon~
Feb 27, 2013
Poor Grayson, temperature of 104 AFTER being given Tylenol. Breaks my heart. The doctor said to wait it out.
In the ER, sent home with antibiotics
March 1, 2013
Back at ER, it’s been 4 hours they still won’t see us. Temperature is 105 he is so sick but they won’t take us back, the waiting room is packed.
March 2, 2013
Came back to ER in the morning and held my baby up to the check-in window. crying, begging, and pleading for them to take him, his temp is 107.
We need prayers…Grayson its extremely sick….
March 2, 2013
Grayson just started his IVIG treatment to save his heart. It will take ten hours for the IVIG treatment and they can then test his heart tomorrow. He has been diagnosed with Kawasaki disease. Thank you to everyone for all the prayers and comforting words. Hugs
March 3, 2013
Grayson was only able to go through one hour of treatment. He is too sick to handle it, his heart is fighting hard. We have been placed in ICU, please continue with prayers, he needs the treatment asap. Hugs
March 3, 2013
Grayson is tolerating the IVIG. I believe 5 more hours of treatment and then we can run tests on the heart. A difficult night but the ICU team was amazing. Thank you to everyone for all the support.
Receiving the first echogram….he is sleeping through it, still in ICU
Grayson finished his treatment for blood clots and inflammation of arteries With Remicade infusion. Blood work Is improving. We are going to try and sleep for a little bit. Goodnight, I’m going on 50 something hours of no sleep. Thankfully they allow me to sleep in his bed. Blood transfusion tomorrow.
March 4, 2013
In a little bit, Grayson will have another heart x-ray. Right now his z score is at 2.2 this measures the dimensions of his coronary arteries. If he goes over 2.5 he will need to be put on an experimental drug to bring the inflammation down, we have already tried everything else. Please pray that his score is low! He will need a blood transfusion shortly.
His Platelet count went up so we did not have to go ahead with the blood transfusion He is still very miserable and uncomfortable but he continues to get better! Today he will have another echo for the heart and we just had blood drawn, this will let us know what our next steps will be….I don’t even know how to put into words my gratitude to everyone. The amount of support, the prayers worldwide, It really is amazing! THANK YOU!!!!
March 5, 2013
He is still fighting, he just started another 10 hour round of IVIG…..Hoping he can tolerate
Super tough and emotional night. Grayson has about 2 hours left of treatment, tolerated it well but his stomach is in a lot of pain
Grayson was taken out of ICU and sent to critical care late this afternoon and I brought Jordan and Nate to see him for the first time, they were all so excited.
March 6, 2013
Good morning, yes it is a FABULOUS MORNING! Grayson has no fever, no rash, no swelling, no IV’s, no stomach pain and his heart sounds WONDERFUL! We are waiting on blood results that were taken early this morning. HE MIGHT COME HOME!!!! Thank you thank you thank you!!!!
March 7, 2013
Our hearts are overjoyed, GRAYSON IS HOME! The only meds he is on is Naproxen. He is happy to be with his brothers, he is like a new boy! His coronary arteries are still inflamed BUT the IVIG will continue to work in his body over the next year to help bring them back to normal. His platelet levels are low so we pray they continue to go back up. We have a heart echo and blood test on Wednesday with our amazing miracle doctor, doctor burns. Our baby is home, thank you!!!!!!! Love to everyone!!!!!!! Ray and Kristin
March 13, 2013
Echo time…..positive thoughts
March 18, 2013
today is Grayson’s first full day back to school and look what the boys get to come home to. I am so blessed to have such amazing friends near and far…thank you…..xxxxoooooo
Ray and Kristin
We have been home for a little over a week from the hospital with Grayson’s bout with Kawasaki Disease. I believe the boys actually have a newfound appreciation for each other and I as a parent have more patience than I thought was in me. I feel like we have been given a second chance and it feels darn good!
Grayson had his heart echo and blood work last week. His echo was 100% NORMAL. His heart went from being two points away from having irreversible damage to normal in 1 week. Yes, wonderful doctors, treatments, and medicine helped but I have to say I am 100% sure that prayer had just a big of role! His blood work did not give us the results we were looking for but with time we firmly believe it will be back to where it should be. He has started back up at school and we have only had one off day where I had to bring him home.
So all of this leaves me saying how do I even begin to say thank you? We received gifts of meals, food, laundry, cleaning, games, toys, letters, pictures, time, knowledge and so much more. Prayers came from all over the world while gifts and cards came from YOU, yes YOU, our readers, my BLOG FRIENDS! I feel completely incapable of truly explaining what all of this means to us.
So Thank You Thank You Thank You! I will honor your gifts by pouring my heart and my soul into spreading awareness so we can save lives. My first step in doing so is a video I put together.
You can watch it via Smile Box(first video) or YouTube (below)
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How can one explain how humbled, grateful, and blessed we are by your words, e-mails, notes, encouragement, and kind gestures…..THANK YOU! Thank you for being here, thank you for being a part of our lives!