~Hi Friends~
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. At the end of this post I have all of Grayson’s updates. Thank you for being here, thank you for being a part of our lives!
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.
Video that explains Kawasaki disease
Symptoms and facts about Kawasaki disease
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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!
Mommy; “I just want to be happy again, I want to go home”
~Soon baby soon~
Here is a copy of all our updates while in the hospital with Grayson…. How can one explain how humbled, grateful and blessed we are by your words,e-mails, notes, encouragement and kind gestures…..THANK YOU!
Feb 27, 2013
Poor grayson, temp of 104 AFTER being dossed. Breaks my heart.
March 2, 2013
We need prayers…Grayson its extremely sick….
March 2, 2013
Grayson just started his IVIG treatment. It will take ten hours and they can then test his heart tomorrow. He has been diagnosed with kowasaki 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. We have been in icu all night, 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. T hank you to everyone for all the support.
Receiving first echeogram….he is sleeping through it, still in icu.
Grayson finished his treatment for blood clots and inflammation of arteries With remicade infusion . He its sill showing lots of signs but Bloodwork Is improving. Yay. we are going to try and sleep for a little bit. Goodnight i think I’m going on 50 something hours of no sleep.
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 a experimental drug to bring the inflamation down, we have already tried everything else. Please pray that his score is low low low!!!
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
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 stomach is in a lot of pain
Grayson was taken out of 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 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 miricle 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 graysons 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
~Hi Friends~
(video below)
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 new found appreciation for each other and I as a parent have more patience then 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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I was diagnosed with the KD 16 years ago when I was 4 years old. Greek doctors were extremely ignorant back then!
I didn’t know you were going though this. May God bless you all!
I just came across your blog when I was looking into painting my kitchen cabinets. I am a Physician Assistant and I wanted to know how your sweet little boy is doing now? I also wanted to know what his symptoms were when he first got sick so I can be more aware and hopefully never miss this illness. My heart goes out to you as a mother – I nearly cried reading your posts:(
Today is the first time that I ever saw your blog. I am so happy that I had the opportunity to do so as I came across the story about your son, Grayson. I wanted to express my heartfelt gratitude to you and your family for sharing such personal moments during Grayson’s treatment. I pray that he is doing well and that as a family, you continue to grow stronger each and evey day. May beautiful Grayson’s health continue to get better and thank you again for educating so many of us about KD. Best of wishes to you!
i found your blog today by way of pinterest and your fall fireplace post. my daughter had KD feb 28-march 7 2006. she was 3 and a half at the time. we have been fortunate not to have any heart problems since that time. been there as a mom. its.the.worst. prayers to your sweetie!
I was just checking out my favorite decorating blogs when I saw your header about Kawasaki Disease.
My son had KD when he was in 2nd grade. We thought it was just a virus. His pediatricians didn’t know what it was until they noticed the skin on his fingers was peeling. Then they start asking some serious questions. He had high fever, a rash, and swollen lips. And peeling skin on his fingers.
I was a single parent at that time with little to no money. Somehow we were connected with Children’s Hospital in Cincinnati to a Rheumatoid Pediatrician just happening to be doing a study on KD. All of my son’s treatment was free! By the time he was diagnosed, he was already on the downswing. He had his echo’s and THANK GOD all were normal, no heart damage.
My beautiful boy turned 30 this last December! He is so busy and active he can hardly find time to call his mother!
Prayers for the continued healing of your Grayson.
I wanted to let you know that I came upon your blog after looking at your coconut oil/baking soda scrub. Then it caught my eye that you had a tab labeled Kawasakis disease.
I am a 32 year old woman and I actually had Kawasakis back in 1985 when I was a 4 year old girl. I was so blessed to have been accurately diagnosed and treated even way back then. I have no real memories of the time . . other than the occasional echocardiogram when I was well.
My mom is an ER nurse and actually had the experience of diagnosing at least one child based on the symptoms she recognized but the physicians didn’t.
I love that you are raising awareness on your blog and I love that you give the Lord credit as the ultimate healer of your beautiful son!
I just thought i’d let you know that I appreciated your story. Also, I thought you’d enjoy knowing that I am a completely healthy adult . . no limitations . . no medications . . So thankful that you spoke up for your little boy as my mom and dad did for me.
Just read your account of Grayson. Praying he has had a complete recovery and his heart restored. Our son, who is now 34, was diagnosed at 2. We were very blessed to have a good medical team, but I believe he was healed by the power of prayer. He had a complete recovery. At the time, Kawasaki disease was unheard of, but the pediatrician our family doctor sent us to had just written a paper on it. We had a friend whose son had it at 3. They did not have the support of a good team and her little one had severe complications. Thank you for making people aware of this deadly disease and the timeliness of correct diagnosis. God bless you.
Hi Peggy-
Thanks so much for your sweet note! You were so lucky to have had your son looked over by such a great time of doctors considering how little they new back then. Even today it is so difficult to get a diagnosis. I honestly believe just like with you, prayer had so much to do with his recovery and for that I am so grateful! Thank you so much for stopping in I hope I can continue to spread the word about this horrible disease. XO
Kristin
My nephew had KD 7 years ago. He was 2 at the time. He had every symptom at the same time, something the docs at Texas children’s hospital in Houston had not seen. He had no lasting damage to the heart. Glad you Grayson is okay.
I was reading your blog on using painters tarps for outdoor curtains, and before I go to the Kawasaki are the tarps waterproof?
Our grandson had a hard start to life and was in hospital before he was a week old with a complete Aorta blockage which necessitated a major operation to remove it. By Gods grace and the doctors he survived. He had issues with feeding etc but finally he came home and slowly got stronger. Then it hit he was I think about 3 when he was rushed to the local children’s hospital again for a very high fever. They first diagnosed Cat scratch fever but this soon was cancelled and yes you guessed it Kawasaki. I had never heard of it so immediately went to Google. I was shocked it is quite common really. He struggled and came home some weeks later but then caught it again when he was 5. It broke my heart my husband could barely deal with it. Let us just say he is a handsome, tall 13 year old now but he is left with 3 aneurysms which have to be checked as he grows. I am glad your son is good and I pray they both have a great and healthy life ahead.
I had a grandson with it but better now
I’m so glad he is doing better, it is so scary!
I just found your post and saw the link on Kawasaki Disease… I read the post of your worries, fears and prayers to God for healing.. I had to smile when I read his heart was normal.
My sweet hubby of 36 yrs has had 5 heart attacks and 4 heart surgeries, one being a quadruple and the last inoperable… I know the fear you have had.. and I lifted my hubby up in prayer to everybody I knew and didn’t know… I am a hospice nurse and when the Dr told us there is nothing that can be done. Go home and get your affairs in order… It was just too close for comfort.. I said God this is bigger than I or we can handle and I just have to totally place it in your hands., I can’t handle this Mountain! One month at the Dr office.. He looked at the new test and ecko and I cried.. I just prayed that God heal my hubby.. and the Dr looked up and said.. There is no explanation but your heart has NO DAMAGE but God has heard your prayers. I jumped for JOY and thanked God,,, in this Dr with different faith… and he said yes you have been blessed… Why I share this.. is GOD is the greatest Physician and he can HEAL and Apparently from what I read… HE HAS BLESSED YOUR SON and FAMILY… Isn’t God good!!
I will keep your sweet son and your family in my prayers… Thank you for sharing and putting me back to the day that GOD healed my hubby and Blessed us!!!
Hi Kristin,
I came across your blog from pinterest on painting kitchen cabinets and then saw you had a tab for KD. My son got it at the age of 16 and I had no idea how seriously sick he was. It is a miracle that he is fine, but I wanted to urge you to put on your site some of the causes for KD. It is preventable if you follow guidelines or at least it makes it less likely to contract it. My son got it from cleaning out an old, filthy, stagnant pond for an employer. He had a high temperature, flu-like symptoms and then his hands and feet started to peel very thick sheets of skin — a dead-giveaway of KD. So, I help this helps any of your readers to be very careful when your kids are around stagnant water or they can even contract it from wet carpets that have been cleaned!! Anyway, thank you for sharing and am so happy for you that your son is doing so well! Thank God!
A mother who wished she had taken her son sooner to the Dr.!
T Carr
Ok, sorry about that. I now see you have links on what KD is! You can delete my post. But, I am curious, do you know how your son got it, or have an inkling of how he got it? Thanks! T Carr
How is your son doing today? My son is 12 and he had kd when he was four. It was so very very scary. He is ok physically now but has been dealing with ptsd/anxiety ever since his hospital stay. I pray that some day it will just go away as it is life changing.
Just reading your article regarding your son and Kawasaki Disease. I am pretty sure that by now you are aware that this disease is part of the Vasculitis family of diseases. If not, please go to Vasculitis Foundation.org and read more. By joining this foundation, you will receive newsletters and info about support groups and Doctor lead symposiums all around the USA. I am a 67 yoa female, who at age 62 was at death’s door with Microscopic Polyangiitis, another one of the types of Vasculitis (there are 14 different types). It has been wonderful having support by not just strangers in other towns, but also by doctor’s who KNOW what Vasculiltis is and how to treat it. Also, as an autoimmune disease, your son will have it for life and will certainly need info on how to control flares and what to do to prevent them (exercise is so important). Will pray for your son and your family that he will stay in remission and continue to do well.
Thank you so much for posting this. It brought tears to my eyes while reading because it brought back a lot of memories. My child had KD shortly after turning a year old. I knew something terrible was wrong with her but I had no idea what it was. You mentioned the pain. My child cried out anytime someone touched her. Even clothes hurt her skin. But the doctors would believe me. Then her nose started bleeding. I was so scared but the doctor told me there was no need in coming back in because it was probably just dried out sinuses. I took her to the ER instead and pleaded that they do something, blood work, a test, just something. By this time it was after mid-night. The doctor sent us home after taking blood and told us to be sure to follow up with the ped in the morning. By the time we got to the office, he had a team, an entire TEAM of doctors waiting on us at the closest children’s hospital. He told us to go straight there. We were not to stop for anything. He had just told me that my child had something that I had never heard of. I had a million of the worst case scenarios running through my head. It’s a day that I will never forget.
Thank you Julie, I hope I can spread awareness on KD because just like you we were turned away so many times. I think of the permanent damage that could have happened. How is your daughter now? Thanks so much for stopping in, happy new year!
*after writing this I considered not posting it but I would feel forever guilty if I did not share my story and experience with KD.
Just found your blog today. As I was reading the header I saw the Kawasaki Disease tab. I choked back a tear and read your posts. I am so, so happy that your son has weathered this illness. My story is a little different. In 1978 my son was diagnosed at age 5 months. Little was known at that time about aggressive treatment. I am a nurse. My situation was unbearable. In 10 days my baby, unconcious, covered with red, painful and seeping blisters finally became more alert. It was a miracle. At age 3 we addressed the heart issues and a recurrent rash. In time he grew up, played hockey, graduated university and was working as a computer systems security specialist. He then had a car accident, in addition to concussion from hockey playing he had traumatized his brain. The KD likely damaged major arteries in his brain. He died at age 33, in my arms after a violent siezure. I could not resuscitate him. I post this for two reasons. Number one, this is a ravaging disease. The effects last into adulthood so the parent must be alert always to changes, new symptoms, deficits. I missed some of these and I will blame myself for the rest of my life. Don’t tell me it is not my fault, I know that, but I want to warn you about long term effects. Reason number two is to continue the conversation about KD. Most people do not know about it. I resuscitated my son at 5 months the first time. Even the doctors at the time were unaware of what was going on.
In closing, I will pray that your son does not ever have a lingering effect. And I hope that this does not cause anxiety but forewarns you to remain alert. Bless you and your family.
Cheryll, I am so glad you wrote, it is so important for us to share our experiences so we can help others. I am so incredibly sorry for the loss of your son, it is not fair. I will never understand why, the only thing I can continue to do is inform and educate. Through this blog I have helped 2 other families diagnose their child when the doctors turned their back on them, I know it saved their lives. Thank you for writing, thank you for sharing, my heart is with you. Take Care!
Hello!
Like a few others, I was looking at craft ideas, and your Kawasaki Tab caught my eye. It’s such a little known thing, every time I see anything about it, I’m interested!
I had Kawasaki Disease when I was 5 years old, in Kindergarten. I remember it hurting, not being able to walk, and my skin peeling and peeling and having band aids on my fingers! I am 35 now, have had absolutely no effects from this disease. I hope your little guy has recovered well (I know it’s been a couple years.)
Cheers to you and your family
Thank you so much Amie, I’m glad you have made a full recovery, it is such a scary thing. We still have some lingering affects but he is doing great! Hope you have a wonderful weekend and thank you for stopping in!
Kristin, like so many others, my eye to caught your Kawasaki tab. My daughter had KD when she was almost 3yrs old. We spent the most horrible 48hrs in ICU but consider ourselves lucky that our pediatrician was aware of the disease, it’s symptoms, and acted quickly. She is 21 now and shows no long term effects. She was monitored religiously with EKG’s to evaluate her heart for the first 3yrs.
I make sure the list Kawasaki on all her medical forms. It still surprises me of the amount of children that contract this little known or talked about disease.
Kris
Thank you Kris for sharing your story, all we can do is spread the word so people are informed. I am so glad that your daughter is ok. XO
Thank you for posting. My daughter was also diagnosed with KD almost a year ago. She had a low fever and pain for the first two days and I just assumed it was a 48 hour bug. Then she developed a rash on her neck and by the time I got her to the doctor’s office it had spread all over. Her pediatrician wasn’t exactly sure if it was KD or scarlet fever. She wanted to see us back in a day. This all started on a Monday and when we went back to the pediatrician on Friday at 9:00am, she and two other doctors examined my daughter, left for a few minutes and came back in to tell me the emergency room pediatric unit is waiting for us to arrive. I sat there frozen for a minute. We rushed literally across the street and my daughter was admitted and were in the hospital for 5 days. Thank goodness she had the treatments and she seems to have recovered nicely. We still have appointments with the cardiologist every 6 months and all of her teachers are aware of her condition. There are times when she is tired and I watch her like a hawk. I am so happy both of our children are healthy and happy.
I am so glad she is ok. It is so scary how quickly it can turn and how it can look like just a regular virus those first few days. It has been a few years and I still see strange things that come up and it always make me wonder if they are related. Right now he is home sick with a 102 fever and I don’t let him out of my sight. Thanks for getting in touch with me, let’s keep spreading the word! Take care!
I’m brought to tears reading of the children including your son who contracted this disease. Our absolute feeling of not hopelessness, but helplessness as parents to protect our child! My youngest was taken by C-section too soon and his lung collapsed. Then tests indicated that he was going to be developmentally challenged and a dwarf. I was beyond crushed. But that was not what God had planned for this boy! He got better! The tests were wrong, the doctors were wrong! He is now 37 years old, a 6 foot tall, college graduate IT specialist (who I bug on the regular to fix my computer foul-ups, lol)married man. He is truly a blessing from God and a kind, generous man. Thank you God for doctors, nurses and hospitals, and the knowledge to help.
P.S. really enjoy your blog!
Thank you Denise for your kind words. Watching Grayson become so sick is one of the hardest things I have ever gone through. I’m so sorry for what you had to go through as well, how scary! God was definitely watching our 2 boys, thank you for sharing your story! xo
Kristen,
Just found your post through Pinterest and I saw your link on KD. In Sept 2015, at that time our 5 yr old daughter (adopted from China) was diagnosed with KD. I knew she was very sick … I took her to the doctor 4 times within a week, even meeting our doctor after church in the parking lot showing him her blood red eyes and pushed away saying she’s fine. The pediatrician had put her on an antibiotic that had made some of her blood work to change for the better. But I knew she was still a very sick little girl but felt the doctor thought I was an over reacting mama. On the fourth vistit to the dr office an intern saw how sick she was and saw her eyes and Immediately went out and got the doctor and they came right back in finally saying she had KD and sent us to the children’s hospital in Macon, Ga. It’s crazy how little doctors know about KD, well at least in our small town. I’m so thankful for the intern that was there, she had just studied KD she told me! Gracelyn had all the signs of KD. She was able to take the treatment on day 8 of onset. She had EKG’s and blood work for 6 months and her heart seems to be fine. It took her months before she was back to herself, running around and playing as normal. But she still has times for weeks at the time where she is not herself and seems really tired and not herself. She complains with a sharp pain in her chest area that comes and goes (not real often). I know it’s real because I’ve seen her when the pain hits her. And I know this child is not a complainer. She is an amputee, who has been through a lot of pain in her short life. We’ve had another EKG and chest X-ray and nothing has shown up(which I’m thankful but still very concerned). Just wondering if anyone else has experience this with their child. I’m searching for answers. I’m thankful your child is doing well also.
Thanks,
Machell Rogers
Dear Machell-
I am so sorry your daughter had to go through all of that! Our stories sound so similar, as do many, where we just get blown off, so happy she was able to get treated on day 8! I know for many months after we came home from the hospital Grayson (very similar to your daughter’s name) would become very tired and would have to rest, some days he was only able to stay at school for half a day, some days he just couldn’t go. As his energy strengthened over the months he started to be more “himself” however he still continued to have pain in his legs. Some days the pain was so bad I would have to give him piggy backs around the house to get from point a to point b (It took about 6 months for all the inflammation in his heart to become normal at that point he never complained about chest pain) I would say it wasn’t until a good 2 years after being diagnosed that the pain stopped. When speaking to his cardiologist I was told that it was not related to Kawasaki. Although I trust in the doctors I felt in my heart it was a 100% related. 5 years later he is pain free thank goodness. He will complain here and there but I’m pretty sure at this point it is growing pains.
I’m happy to hear your daughter’s EKG was normal, I think at this point she most likely isn’t going in for annual checks, I would continue to push for a annual EKG if she continues to have chest pain. She seems like such a fighter! Are you in any of the support groups on Facebook, they have been so helpful, let me know and I can add you to them!!! Thanks for reaching out, praying Gracelyn continues to heal and feel better!
Isn’t the power of prayer amazing? It has no boundaries! Thanks for sharing!