The Healing Process - - His Final Words - - Dedicated to Kory 3/25/1991 - 8/31/2007

I'll start by saying that I'm sorry for actually putting this in writing and going into such great detail. I guess it's part of my healing process. I really need to relive the last few days of Kory's life in order to put this behind me. While I'll never forget this paticular week I'm hopeful that eventually I learn to hope to cope with it better. I never realized how bad this day would hurt and I'm heading into the second worst weekend of my life!! I don't know it comes pretty close to the one last year. I guess it's almost harder because it's been a year since Kory actually spoke to me. The final words were, "I love you too." I got to hear those 4 wonderful words from my beautiful son. It hard to believe that 4 words like this could mean so much to me. I'd give anything to hear him say it again!! If this already has you tears don't continue reading I understand. Like I said it's a healing process for me.

My week last year had started abnormally. I came to work on Monday but had to leave a few hours after arriving to take my husband to the hospital emergency room. We were there all night because they thought he had a blood clot. My daughter spent the night with the boys (Kory and Adam). Tuesday morning after being up all night at the hospital I decided to not work. I called out sick. So we rested until about noon. At noon we started our daily routine. Since my hubby still wasn't doing good I took control of getting Kory ready for the day. Normally Howie handles all of this. He did get Kory out of the bed for me and sit him into his wheelchair and returned returned to bed to prop his leg up. I was getting Kory ready and started out of his room to get his daily medications and something to drink. The phone was ringing so I kind of rushed a little. Just as I entered the hallway leaving Kory's room I heard Kory say "Mama help" I turned quickly to see Kory starting to lean forward in his wheelchair. I reached as far as my arms would extend to try to grab him but it was too late. He came tumbling face first out of his wheelchair and hit the bed frame with his face. I immediate began screaming. Adam started crying and Howie rushed into the room and scooped Kory up. Kory's face was scuffed up and his legs. His ankle was already beginning to swell. His glasses were bent in all different directions. But brave Kory didn't shed a tear. He said "Just put me back in bed and I'll be okay." We did and we started the clean up. We washed the blood from his face & leg and fixed his glasses the best that we could. We put an ice pack on his ankle. About an hour goes by and Kory is still complaining about his ankle. I decided that we should take a drive to the nearest emergency room to have it x-rayed. So we did. They said that it was badly bruised but not broken. They treated the other wounds with some ointment and wrapped his ankle, sent us home with some pain medication and told Kory to keep his leg elevated. We did exactly as instructed by the ER doctor. All day Wednesday Kory stayed in bed with his leg elevated. He had a hospital bed so he could set up through out the day as needed. He slept most of time but we thought this was just from taking the Tylenol 3. He was scheduled on Thursday morning to get a feeding tube so we felt the rest and sleep would be good for him. Thrusday morning went as planned. We got up I got Kory ready for the hospital. I packed our bags since I would be staying all night. I even packed a cooler with some drinks for me to have durning the days and nights at the hopital. My husband drove Kory to the hospital. We didn't have anyone that was available to keep Adam. I drove with Adam with the intent that Howie and Adam would leave in Howie's truck once Kory was admitted and I would have the car incase I needed to leave the hospital. When Kory and Howie arrived at the hospital Kory seem sleepier than usual. We got checked in and they took us back to the presurgery area. They started taking the vital signs. Kory's blood pressure was low but that wasn't abnormal for him. The took his oxygen level test and it came back at about 48. I was in shock I said, "Your machine is broke!!" There's no way I thought!! They tested again. Again the same number appeared. So I had them test me and I came back at normal 98. They tested him again and still low. The went to get another nurse and doctor. They checked Kory and decided that he was cold. We put him the bed with a couple of warming blankets. They rechecked the oxygen level again and it came up just a little to 52. Still way too low. They then decided that Kory needed oxygen. Once they hooked him up to the oxygen his levels rose to normal range again. However, Kory got much sleepier. He only able to open his eyes and talk to us for a minute before he would fall back to sleep. One of his doctors couldn't figure out what was going on. So he decided that Kory was having an allergic reaction to the Tylenol 3 and that it was affecting Kory like an overdose. He decided to give Kory some kind of medicine that would counter act the overdose. He said, "He'll definately wake up if this is the reaction that Kory is having." Unfortunately it only aroused Kory for brief moments. Then he would fade into a deeper sleep. The tried giving him more doses but nothing seemed to be working. They called in the heart specialist. They did a chest x-ray and some other funtion test. The test all came back fine but the heart doctor told me to tell the other doctor to run a blood gas test. When the other doctor came back I gave him the results as Kory lay in coma state. I told him the other doctor suggested a blood gas test. He did the test and said it didn't work so he did another one. Well the test did work, Kory's blood gases were off the charts. So they rushed me out of the room as they began to bag Kory. I watch for just a second until the nurses realized that I was about to pass out. Then one of them took me out of the room. My family was there except my husband & Adam. I told them what was going on. I called Howie and he returned without Adam. One of our neighbors took Adam. Hours later the doctor finally came out and they had put Kory on a ventilator. They had a very hard time inserting the tube because of the spinal fusion that Kory had years earlier. They would be moving him from the surgical area to PICU for the night. We weren't able to see Kory until late that night because of the set visiting hours and they were still having a hard time with the tube. Finally around 9 pm they allowed us back to see Kory but only 2 at a time. He was awake on my first trip back. I told him to rest and that I would be there all night if he needed me. He went back to sleep and we let other family members and friends go back. Kory's best friend came, They told him he could not go back because he was too young. I begged them to let him go and finally they agreed but said they wouldn't allow it again. I'm so thankful they let him go back. It was hard on him but it was the last time he ever got to see Kory alive. Once the visiting hours were over they would only allow 2 family members to stay all night inside the hospital no exceptions. One could actually stay in Kory's room and the other could stay in the waiting area unless they gave you a room with a single bed and bathroom right down the hall. They said they based these family rooms on the children that were the most critical. They only had 10 rooms like this. I received a room and something should of clicked that it meant Kory was one of the worse cases but it didn't. I stayed in Kory's room with him until about 3 am. Then I called my daughter in (she was in the guest room) and I swapped with her. She stayed with Kory until 7 am when the visiting hours were over. They didn't reopen until 9 am so we decided to get ready and go grab a bite to eat while we waited until the next visit. As soon as we finished getting our showers and make-up on the guest room phone rang it was PICU. They said they had removed the tube and Kory was upset so they wanted us to come on back. We went immediately. Kory was awake and trying very hard to tell me something. I never could understand him but kissed him and told him I loved him and that he could tell me later at the next visit. He said, "I love you too." which I didn't really understand but knew what he said. Kellie and I left his room to finish getting ready. About 15 to 20 minutes later the phone rang again. This time I was told to come back to Kory's room immediately. When I got back there they told me that Kory was back in coma. His blood gases were rising since the tube had been removed. They said that we had to make an immediate decision as to wheater or not we wanted Kory to go on the ventilator permanently. They said we need to make the decision within an hour. We called on the family and jointly we had family meeting at the hospital. The doctor said that they did not feel that ventilator would not be a good option because of Kory's current condition. They felt that the vent would have to turned up extremely high and that he would never be able to talk again. We took their advice and decided as a family to let Kory go onto heaven. Kory passed away on Friday morning shortly after 11:00 am as a result of respiratory failure. My only regret is that I never could find out what Kory wanted to tell me. He never woke up to tell us at 9:00. I miss him so much and would give anything for one more hug and kiss. I would gladly take his place!!

Thanks for letting me share!!
Kim

To Kory:
I just want you to know that I love you with all my heart and miss you so much!! Please keep visiting me. I'll always remember you and I'll see you in my dreams!!
Love you!!
Momma

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Replies to This Discussion

Dear Kim,
God Bless you and your family. I'm sure Kory is smiling down on you every minute of each day.
Kim
Kimberly

I pray for you to have the strenght to remember the love and special times with your loss, I am truly sorry and appreciate and honour your dedication to Kory. we have a road ahead and many will join us that are yet to learn the implications of this on our families. In a strange kind of way, you have and were with Kory to his end, this is a blessing I ask of our Lord to grant me, allow me to live to rejoyce in the finding of a effective treatment, or at least long enough to say farewell for the last time to our special boys, and rejoyce in having had such special children, ones that will probally be loved far more that we would have in a normal world. We have become richer in many ways and this is also a blessing.

My thoughts and prays are with you and your family at this time, God bless.

Colin
Kim,

God bless you and your family.

Julie
Dear Kim:

God Bless you and your family. Thank you for sharing with us. I hope that we can help you in anyway that we can even if it's just by "listening" and know that Kory is with you each and every day and that he does still love you very much.
Dear Kim,

I am so sorry, I don't know what to say to ease your pain. I wish I did. I know your heart is broken and will never be healed, and for that I am so sorry. Please believe that we are all here for you, whenever you need to talk about Kory. As much as your story pained me to read, I am glad I did, and I know that the pain I am feeling right now is nothing compared to what you are still feeling. Oh god, I hope I never have to feel that way as well. I wish science would have a breakthrough treatment to save all of us from having to go through this. No parent, and especially no child, should ever have to go through any of this.

How are your husband and other two children handling this? Are they okay? They must be so so sad as well. My heart goes out to all of you.

Sharyn.
Thank you all for responding with your kind words. My only wish is for a cure!! I pray everyday for a cure for everyone else. My son lost his battle but the battle continues for the furture boys that face the battle and the ones that are fighting today.

My husband is doing an awesome job of keeping in line. He's my strength. He give me the shoulders to cry on the hugs when I look like I could use one. Adam gets concerned when he see me crying and comforts me by telling me that Kory is still in our hearts. He doesn't total understand but amazes me because every night he looks up at the ceiling, he places his hand on his heart and says, "Good night Kory, I love you." I repeat it. It's became part of the nightly routine. He's missed it a couple of times when he fell asleep on the couch but it's almost every night. Kellie is handling it much better than I expected. Kory was very close to both of them. I guess Kellie tries to stay strong for me too. She is very understanding when I call her and just want to talk.

I couldn't stand working today so my boss sent me home. I thank God for my wonderful work family. I've been there for 22 years and they are all part of my family too. My boss, his boss and another member of the leadership team were actually standing with me when Kory took his last breath. Kory's room was filled with family and close friends. The hospital took away the 2 person rule and we all were allowed to surrond Kory with love as he left us for his new journey.

Again, thank you all so much for understanding my need to talk about it. You are all wonderful people. God bless you all.

Kim
Thank you so much for sharing your story. My heart breaks for you. I pray that God will give you and your family strength and help to ease your pain. I can see Kory smiling down upon you...what an amazing young boy. God bless you all.
Kim,
Being a parent of a 7yr old child with DMD that was very difficult for me to read but I made it through it and thank you for sharing. You write so beautifully and your immense love for your son is so felt through your words. I wanted you to know that my thoughts were with you as you appoach that one year date of Kory's passing and what I can only imagine must be an incredibly difficult time. I read on your messages what Kory said about being in heaven once and God seeing you and saying you needing him and so he took his wings off and sent him to you. That was beautiful and I believe he was and is an angel as I believe all our boys are special angels sent to us. You will see your Kory again some day in that pretty heaven he saw and you will find out what it is he wanted to say to you. I'm sure of that. I know my words can't ease your pain but know my heart goes out to you and your family during this time.

Karen
Kim,

I agree with the woman in the last post.... He is smiling down on you and he is telling you he loves you. You are very brave to share your story with everyone here and I hope that it helps you. We have to continue to fight to try to end DMD. Thank you very much for having the courage to share your story.
Tina
Kim, I don't usually go into the Grief and Loss section of this site because as the grandmother of a 4 year old and 2 1/2 year old both with DMD, it is too painful for me, but today I decided to go in. I felt your pain through your words, and I did cry, but I also asked your precious Kory to whisper a little prayer into God's ear for all of our boys. I felt like he did just that. I pray for you and your family and thank you so much for sharing your story with us. God bless you. Terry
kim as a mother i can relate since my son ismael 21 is having a difficult time and is expected to leave us anytime thhruout this ordeal i have had regrets and guilty feelings of things that i should of do differently but one thing i have very clear is hope. hope that one day i will see my son again in heaven where thre is no place for sorrow and we will be standing in the precence of our Lord. coming to these realization has not been easy for me. i used to ask why me but one day my son said "GOD MADE ME THIS WAY SO WHEN PEOPLE SEE ME THEY LEARN TO APPRECIATE WHAT THEY HAVE AND I LOVE GOD BECAUSE HE IS GOOD" THESE KIDS ARE A BLESSING TO OUR LIVES BECAUSE THRU THEM WE LEARN TO HAVE COURAGE PATIENCE ENDURANCE AN UNBREAKABLE SPIRIT AND THE OPPORTUNITY TO LOVE AND CARE FOR THEM TO THE EXTREME OF BE WILLING TO TAKE THEIR PLACE THAT MY FRIEND IS SO SPECIAL AND SO UNIQUE THOSE MEMORIES WILL ALWAYS KEEP HIM ALIVE KEEP IN TOUCH VILMA
Vilma:

Please know that my prayers go out to you and your family. I know how hard this is because I had to take that journey. I put it all in God's hands because of the faith that my sweet son Kory gave me. These boys are so special. I things like what your son said and it totally amazes me!! Kory had that same giving attitude. It was never about him in his eyes it was always about how I was going to handle it when he was gone. He worried about me. I always tried to not show the emotions in front of him but at times I just lost control and he would know how hard I was taking it. He even told my husband one day "I just don't know how Momma will handle it when I'm gone." Howie my husband reassured him. I will miss him everyday and I will love him forever.

Please if you need anything feel free to email me anytime!! If you need to talk I'll be glad to call you anytime or you can call me. We can exchange phone numbers through email. Just let me know. Keep the faith!!

God bless you and keep you strong!!
Kim

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