Debbie,
I am praying for you all.

Debbie - I'm so sorry about dear Bailey! My thoughts will be with you and your courageous familly!

Lots of love is coming your way.......

Thinking and praying for Bailey and your family xx

Thanks so much everyone for your support. Bailey nearly died on Tuesday night due to aspiration and exhaustion from trying to cough and breathe. He is improving every day now, although he still isn't out of the woods. He is eating again and being his little independent self is wanting to feed himself rather than the nursing staff. He is up and showered each day, I took a Mr Bean dvd in for him to watch so I hope to hear laughter coming from him again soon.

He is still weak and cranky, he wants to get out and about and is frustrated that he can't do that. His wheelchair has been delivered by the school so we will try to take him out for a walk to give him something different to look at instead of his bedroom. He was to come home on Monday but the suction tube machine didn't arrive so he will need to stay there until it does and I can learn to use it at home. He can go to school so I can pick him up and take him to school on Monday, the nurse at the school has a suction machine and will tend to that for him when he asks. We are getting no answers as to why this has happened, we are told its HD and his gagging reflex won't return, we are told it is a virus picked up which caused the high temperature, someone has told me their daughter got the gagging reflex back after she suffered a similar episode so who knows.

We cannot comprehend losing him, they are telling us his time is limited but I am not listening otherwise I will just go mad. I can't believe he doesn't have too long to live and no-one can ever tell you a time frame, 2 weeks to 2 years but if he defies the odds it could be longer. He is a fighter and I think God will not win a battle with Bailey, we have learnt that NO-ONE wins battles against him.

So day by day he slowly recovers and will come back home to live from now on as we live closest to the hospital and he can be admitted straight into the kids ward rather than go through hours of waiting in the emergency department. The respite family will likely try to fight this as they love him so much, but he needs to be kept safe and they live half an hour away from the hospital and that can make all the difference in a life and death struggle. Respite will probably be in hospital and we are having a meeting on Tuesday to re-organise our lives.

I feel hatred towards this disease at the moment, it isn't producing any positives for us but I won't give up as long as Bailey doesn't give up. So I thank you all for your thoughts and best wishes - they really do help me feel your support in this community of friends I have made.

Love

Debbie and Anthony



Edited 1 time(s). Last edit at 11/16/2007 07:16PM by Debbie.

Debbie, Thanks fopr the update. What a struggle. I'm, glad Bailey is feeling better and that you will be able to keep him at home with respite at the hospital. That makes sense since he is so medically fragile at this time. Will you have medical help at home, also, or will you be in charge of the suctioning? He must have been very frightened when he could barely breathe. I will keep you and Bailey in my thoughts and prayers.

Debbie, i am so very sorry that things are going this way now. You have every right to feel how you are feeling right now, and i feel that way too for how this disease has been to your family. I am so glad Bailey is doing a bit better, but sorry that you are going to have to re-organize your lives right now, and have to figure a lot of things out. I'm so glad to know you debbie, thank you so much for sharing your life. I have nothing but the greatest admiration for you debbie. Please know i love you and anthoney and bailey very much.

I hope Bailey is ok... I hope you are too. There sure are times that HD just sucks. Bailey is a strong little guy... hope he bounces back.

Prayers for strength for your and your family.

Debbie-
My thoughts and prayers are with you and your family.
Know that many many people are praying and care.