Well, Kyle is taking baby steps backwards, when it comes to the vent. They tried to wean him off and switch him to the regular vent and it didn't work. He ended up needing even more support than before.
This poor baby has such a long road ahead of him. His kidneys aren't functioning properly and so he will need dialysis and a possible kidney transplant in the future.
He will need huge rehabilitation and need to learn how to walk again.
He is so far behind in school, I don't know if he'll ever catch up.
His quality of life is questionable at best. This is all if he even makes it through all the pain and suffering he is enduring now.
He is completely sedated and paralyzed while on the oscillator vent and will continue to be sedated while on the regular ventilator when he finally makes it there.
He is going to miss Christmas this year. We will have it for him when he wakes up, whenever that is. He won't know the difference anyway. We'll just tell him it's Christmas when he wakes up.
Poor baby has been through so much and has so much more to deal with in the coming months and years, just to get back to some sort of normalcy.
He is most likely going to relapse from his cancer over the next few months according to the statistics we were given in the begining. So his quality of life until then will be poor until his death from the cancer.
It's such a sad existence and it breaks my heart for my little man. I want to give him the world and see him ride his bike again! He loves playing baseball and running around outside with his puppy Chemo. All things he can't do anymore. Not fair, but the sad truth.
We need a miracle. God's mercy and grace to prevail! I am going to pray for that!! How about you? What will you pray for? Not just life for Kyle, but some quality to it! Is that too much to ask? I hope not, cause those are my hopes and dreams for my son.
To see him running on the beach with Chemo at his heels, flying a kite. To see him hit a home run and round the bases like a champ! He's so far from that now, I know. As he clings to life in his hospital bed, his muscles are fading away into nothing and so are my dreams for him.
Only God can change this situation, only God can show His mercy on my son and heal him. Only God can make my dreams come true, so I turn to him and ask over and over for this miracle. I know He hears me, I know He hears each one of you. Each and EVERY one of you, no matter how little your prayers are, He hears you and your prayers matter to Him and to me. And especially to little Kyle who lays there day after day fighting internally a battle so large that it would exhaust any of us just to watch.
Pray your dreams, God hears you. God bless you all.
Dear Kat,
We cry for and with you. We love you. I will send you a regular e-mail in a few minutes. Some thoughts are just too personal for a public forum.
Love and prayers,
Jan
As I read your post, through the tears, I can not imagine what you are going through.
I just wanted you to know that we are standing with you in prayer.
God bless you and your family. If there is anything we can do from TN let us know!
