Grayson’s Story (As Shared on Facebook)

My husband and I recently lost our 2 year old son on August 15th 2016. This is the story I shared publicly on my Facebook page to let our friends and family understand what we went through, as well as to inform others so they know what to look for if something like this were to happen to them. If you have Facebook, please find my page, Kayla Dunham, and find this post and share it. I want this post to reach millions so they can understand our situation. I don’t want anyone to have to go through what we did.

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I’m not really sure what I am supposed to say or how I am supposed to say it, but Brent and I along with our family and friends have endured the strongest heartache no one ever wants to go through. We are in udder shock our bodies are numb and there are no words to describe the pain we are in. Our sweet, handsome, smart, outgoing, little boy was taken from us too soon for reasons we will never understand. He is pain free and in the most beautiful place on Earth.

I wanted to give an update for those who love Grayson dearly, have been a part of our lives, who have never met Grayson, and those who have watched him grow up on Facebook.

I want to thank everyone who has sent me texts and Facebook messages. I have read them and they are bringing me a little comfort seeing all of the comments and posts you all have shared. I didn’t know when the right time to post was, but I feel many of you are just as confused as we are.

Last Wednesday Grayson had began vomiting and having diarrhea in the morning and Thursday ended up the same. We thought he had caught a little bug and kept him comfortable. Friday afternoon he began getting worse with what we thought was abdominal pain and I took him to the pediatrician. They said it was the stomach flu. By Friday evening he was getting worse. Thursday evening he was able to sleep, but by bedtime on Friday he didn’t sleep but maybe an hour or so. He was up with pain which we thought was pain with him needing to pass the diarrhea. Friday evening he had some blood in his stool, but we weren’t at the time positive that is what it was. Saturday morning we took him back to the pediatrician and the doctor said with the vomiting and diarrhea, blood in the stool, and abdominal pain, along with the doctor saying he was dehydrated he wanted to admit us to the hospital. We immediately went over to IU Health Riley North where they gave him fluids and we tried to help keep him as comfortable as possible. At Riley North they did chest and stomach xrays and ultrasounds to try to figure out what was causing his pain and constant diarrhea.
By Saturday night Grayson was in such pain he was passing diarrhea every 10 minutes through the night. We were able to get him to sleep a little here and there, but he was hurting. The doctors were having a hard time determining a diagnosis. We were first told that it could be intussusception which is where the intestines can kind of fold over themselves. They said that could be possibly happening when he was having the pains then it would unfold he would be fine for awhile then it happen again during the next episode. They were also trying to see if maybe the intestines were getting stuck. However it was hard for them to say this was it because they could not determine it unless they did an ultrasound while the pain was happening. Then they came to us and said they thought it was a condition called HPS, which is inflammation of the blood vessels which can go hand and hand with the intussusception.
They decided to then just go ahead and transfer us to Riley downtown so that if need needed a pediatric surgical team we would have all the resources and services they offered. Before we left they did another ultrasound and they said his appendix was enlarged, so that could be the case.

He was transported down to Riley and he was still in major pain. They did another ultrasound and they said it was not the intussusception and his appendix were not enlarged, but instead his colon was inflamed and colonitis was our next diagnosis. They then wanted to put us up in ICU so if we needed any extreme care we would be in the right place then they could always move us around if need be. Grayson’s stomach this whole time had been soft until we were about to head up to ICU and it was getting harder which was concerning to us at this point he was very irritable and not wanting us to move him in any way because of the pain. The doctors came in again and said that they are positive that the next diagnosis was the correct one, which was HUS, Hemolytic Uremic Syndrome. The pain was so severe they had given him many doses of pain medication and it wasn’t taking his pain away. They told us that his kidney numbers had fluctuated and that they were going to have to put in a central line and put him under sedation to get what they needed to put in so that they could temporarily place him on dialysis to let his kidneys take a rest and let his body rest. This was not going to happen until today. They decided to put in a ng tube and once that was in tons of fluid came out. His stomach was swollen and hard and this relived his pain. He was actually able to talk some more and was watching you tube and not complaining and screaming of pain. I personally thought at that time we had finally figured out the pain situation and we were good until he needed the surgery and dialysis.

I’m not sure of the exact time, but the doctors came in and told us they wanted to go ahead and put in a breathing tube so that he could relax and rest before he would have to go through surgery and dialysis. During his stay at Riley North and Riley Downtown his heart rate was extremely high and his blood pressure was extremely high. They did give him blood pressure meds a few times to help get it lowered. They said at first that could be his anxiety and worrying and not wanting to be hooked up to machines and his IV, blood pressure cuff etc. But once we got the diagnosis of the HUS high blood pressure was a symptom. They put the breathing tube in and got him to relax and his numbers were looking better. His blood pressure finally went down his oxygen levels were perfect, but his heart rate was still high.
After a few hours with the breathing tube we were told that his I believe hemoglobin dropped from normal to nearly 0. They were not able to get his heart pumping on its own to be able to get him on the echo heart machine. The 20 some doctors and nurses in the ICU did CPR for almost an hour and forty five minutes. They did every single thing they possibly could to try to get our baby boy back to where he needed to be. They are still unsure how his numbers went from being normal to nearly zero within a few hours. They told us his chances of survival were very low even if they got him onto the machine. As parents this is the hardest thing we have ever had to do.

My heart is in shock I’m numb, and I don’t have words for what even happened. This wasn’t supposed to happen. They thought he had good chances of getting through this his bacterial infection which caused this was just too severe. My heart and body are empty right now. Brent and I are grieving in different ways and we will never get over this and never know why God did this to us. We have no clue and we will never know and I pray God lets me know someday.

I am sharing my story with you all in hopes that as parents you stand up for your children and advocate for them. Never ever give up on them. We asked more questions than the doctors were probably prepared for. The doctors at Riley hospital are the best in the nation and we worked with the heads of many departments and they were all so great to us and Grayson.

Once we have more details on things I will be sure to let everyone know. Please never forget him and please talk about him and share your memories and keep him in your hearts. I’m not sure where we go from this point and how I will move on with my life. After we left the hospital this morning I went to be checked out at Methodist just to make sure the baby was okay from the stress and anxiety that I have been through the past few days. It’s heartrate was good and he or she was moving fine.

Thank you all for the prayers and I am reading them all and seeing everything just not responding at this time.

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36 thoughts on “Grayson’s Story (As Shared on Facebook)

  1. I have never been one to take pictures consistently. Seeing your passion towards it and how it is going to give you memories to forever look back on, I now want to follow in your foot steps and capture more moments of life so I have pictures to look back on. Love you Kayla; continuing to pray for you, Brent and your family.

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  2. I’m extremely sorry about your loss! Even tho I never met you guys, I still cryed once I read it. He was the cutest little boy ❤️

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  3. Words can never say how sorry I feel for you. What a huge and tragic loss. I know God will be with you and carry you through this

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  4. So sorry for your loss .what a beautiful boy .But did they check for ? We will be praying for you all !Lord her are prayers ! Your both are amazing parents!!!! In Jesus name amen !

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  5. I am so very sorry for your loss. I can’t imagine the pain you must be going through. Please know you’re in my family’s thoughts.

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  6. I’m so sorry for your loss. It took my breath away as the tears ran down my face. He was a beautiful little boy! For some reason, God wanted him to live with him. God bless you both. You will be in my prayers,

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  7. Prayers for comfort for you and your family. I’m so sorry for the loss of Your precious Grayson.May the good Lord keep His arms wrapped around your family.

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  8. Praying for you and your whole Family. I can say that God KNOWS how you feel ,as He gave His Son To Us. I do not know or will I say I know how you feel. I have never lost a child, parents yes. The Pain of that was hard enough. Please give yourself Time to Grief. KNOW THAT GOD TRULY LOVES YOU.

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  9. Thank you for your strength and story of faith. You are br as ve parents with love and compasion. Your story will help others have the same strength and courage as others go through their own trials. God be with you through your grief and still experience the joy of your new life that is about to be born.

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  10. I do not know you but I did go to school with your father Hoppy. I am so so sorry for you. I can not imagine the pain and sorrow you must feel. I lost my husband almost 2 years ago. I can relate as I have a hole in my heart that will never be filled. I have you in my thoughts. Linda (Corwin) Moorehead

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  11. My heart aches for you and your loved ones! I want to let you know that you and your family are in my prayers and will continue to be so for a long, long time. Your little boy was adorable, and I am so sad that he left this earthly plane at such a young age. I pray that God brings you comfort and soothes your hearts. God bless you.

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  12. I am so very sorry for your loss of Grayson…..I offer prayers for you and your family that you may grieve and regain your hope!!! Prayers!!?

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  13. MANY MANY HEARTFELT TEARS FOR YOU & YOUR FAMILY…. THERE ARE TRULY NO WORDS FOR SUCH AN ENDLESS ACHING…. I CAN ONLY SAY I’M SORRY BEYOUND WORDS. MAY YOU & YOUR FAMILY 👪 BE BLESSED ABUNDANTLY ALWAYS.

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  14. How devestating, and what heartbreak. I work in a operating room and agree that parents must be a advocate concerning the care of their children. Sometimes to the point of requesting a 2nd opinion and being firm. As I read this I feel your pain, and this is very hard to absorb.
    Your son was a beautiful boy, now a angel in heaven. When this happens at work with a baby or child, you try to be strong but it’s impossible, healthcare workers try their best but we walk outside and crumble. I’m so sorry.
    I pray for you and your loss. God bless you. 🙏🏼

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  15. I’m so sorry for your loss I lost my son too he was 11 years old but not sure of what they said it was natural cause of death I don’t understand he was fine yes he had a heart murmur he had open heart surgery but the autopsy said everything looked great from the surgery so he was not sure what caused his death this happened in December of 1999 till this day I still grieve for my son

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  16. Pingback: Life after HUS
  17. Such a tremendous loss! It’s impossible to convey the emotions I feel for you and your family! Nothing worse in the world than the loss of your child! Lean on your family and friends, don’t try to be strong right now, that will come later. Your articulate and powerful words show a glimpse of the nightmare that ensues when a diagnosis is very difficult to reach, and your child continues to suffer. Prayers for you and your family and friends!

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  18. I would highly recommend you read the book “Is God to Blame?”, when you’re ready. God didn’t take your son. He’s there to comfort; God is Love. I pray you find peace and healing through him.

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  19. My heart aches for you and your family. I will keep you in my prayers and Grayson a part of my memories. I wish I could carry some of your burden. I pray that you are able to find some healing.

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  20. I am very sorry for your loss. You never get over the loss of your child. I was a pediatric nurse for 35 years and have seen children go through many painful procedures. It breaks a nurses heart to put a child thru pain (torture to us) but it is all in an effort to make a him better. They seem to understand that and are very forgiving. From a nurses and Grandmothers point of view, you are excellent parents. You did everything you could to try and make Grayson better. You kept pushing the doctors to find out his diagnosis, at the same time being at his bedside giving your support and love and trying to make him comfortable. He was very blessed to have parents as wonderful as you. Always remember him in the happier times not what he went through as he left you. He is a happy little boy running around in Heaven watching over you both. I hope that everything is perfect for you and your new little baby.

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  21. I am so sorry for the loss of your baby boy, I don’t know you but it breaks my heart. I will keep you both in my prayers… Remember the fun times you had with him. God Bless You Both!! Hugs for you both..

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  22. I am a mother of 3. Grayson’s story and what you all went through, took me back to a time when I had no answers. I can share with you at a time when you are ready. I found, that when we pray, and God has put His hands on someone we are praying for with no answers to be found here on earth, He answers those prayers by taking the loved one Home with Him. To heal the pain and have them start anew. God Speed to you and yours. I am touched and grateful to have read this and revisited a past time when there were no answers or hope.

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  23. Kayla, your story (every time I read it) brings me to tears and on my knees. My husband and I have a 7mth boy, who like your son, lights up our lives with his constant smile and loving heart. Thank you SO much for sharing your story. As a first time mom, I have no clue what I am doing half the time and pray for guidance and worry constantly. I know our Father and Creator truly has the best laid plans for all of us, but that is so hard to comprehend when I hear your story. I think of you and your son, Grayson, daily, and I mean, daily. Your words and story have made such an impact. Thank you. Sending prayers for God’s healing hand to you and your new baby and continued peace and comfort to your family.

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  24. Your STORY HAS BROUGHT TEARS ALOT TO MY EYES I AM SORRY FOR THE BOTH OF YOUR LOSSES.
    THANK YOU FOR PUTTING IT OUT HERE TO BE KNOWLEDGEABLE OF
    SORRY FOR YOUR LOSS MAY GOOD THINGS HAPPEN FROM HERE ON OUT

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    1. My heart aches for you Kayla, and your husband very much. I have a two year and would be in such pain and agony to go through a loss such as this. I’m praying you can go on with your lives and find joy and peace in the memories of Grayson and knowing he’s with God waiting for you both. I pray you have a wonderful healthy baby and birth for your new little one, and have courage to raise him or her, trusting God so you don’t become fearful. I pray you and your family will have many blessings in life to come. Know that we care and are saddened by your dreadful, confusing, shocking, and unexpected loss. Praying the doctors figure out what happened so they can diagnose quickly, help prevent and cure future patients and make us all aware of the condition that caused this and its symptoms to look for. May God be your comfort when you don’t understand and feel hurt and angry at Him. Know He is good and knows all you are going through. He has experienced all suffering, pain, loss just as we do. He loves you deeply and cares.
      Thank-you for sharing your pain with us so we can hurt with you and pray for you.

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  25. I have cried with your story… My daughter is recovering for E. Coli O157 right now. The pain and stress that this infection brings to the family is horrific. I am still praying that my baby girl recovers from all this craziness. I feel your pain in my own heart. I wish something could be done to get a faster diagnosis and a treatment since there is NONE 😦 She is still testing positive for E. Coli…we know she is not done with it. But we are praying she will be ok…hopefully very soon.

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  26. I am very sorry for the loss of your sweet boy…..I don’t have any wise words on why this happened but please know I pray for your family…I too have a little one in Heaven waiting for me and I am sure thats what keeps me going most days…Praying for a healthy baby for you both and know it has a guardian angel…Bless you all….

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  27. What a beautiful boy. Precious. Innocent. I never met him but I imagine him in the presence of Jesus. So loved. So cherished. So healthy.
    I can relate to you as I have aHUS. I often asked why God? Where are you God? I have no idea if my story would help at all. But I’ve been writing about it here: http://www.lisaostreim.com

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