Post by paulinemjc48 on Jun 12, 2005 11:15:58 GMT -5
Hello.
I haven't posted here very often but tonight I am feeling quite depressed about Nicky's PH. I try to kid myself that he really is very well and most of the time I think he is but when I am honest I can see that he is so much bluer than he was even 18 months ago and he has slowed down a bit. He has a bedroom upstairs but we have also had an extension built (bathroom and bedroom) for him downstairs and when he gets upstairs to bed he is puffing so maybe the the time has come to move him downstairs. However, my bedroom is upstairs and I don't want to be too far away from him at night, he is also fed via a gastrostomy all night so I need to be able to hear him if the pump alarms but not too close to hear every little move he makes. I just feel that if I move him downstairs I will be admitting to myself and
everyone else that his condition is not good. In a way its fortunate Nick has Downs syndrome as does not know that he is ill. He will be 18 in August and has just finished at the children's cardiac unit at Alder Hey Children's Hospital in Liverpool and is awaiting his first 'adult' appointment at Broad Green hospital in Liverpool - we live in the West Midlands - he will
still be under the same cardiologist. I am wondering if the time has come that I should be 'insisting' that Nicky starts taking medication for his PH but I feel the longer we can put it off the better but maybe I am wrong. Sorry for the rambling, some of you know what it
is like living on a knife edge with our children but most parents can't begin to imagine what its like for us.
Pauline UK
I haven't posted here very often but tonight I am feeling quite depressed about Nicky's PH. I try to kid myself that he really is very well and most of the time I think he is but when I am honest I can see that he is so much bluer than he was even 18 months ago and he has slowed down a bit. He has a bedroom upstairs but we have also had an extension built (bathroom and bedroom) for him downstairs and when he gets upstairs to bed he is puffing so maybe the the time has come to move him downstairs. However, my bedroom is upstairs and I don't want to be too far away from him at night, he is also fed via a gastrostomy all night so I need to be able to hear him if the pump alarms but not too close to hear every little move he makes. I just feel that if I move him downstairs I will be admitting to myself and
everyone else that his condition is not good. In a way its fortunate Nick has Downs syndrome as does not know that he is ill. He will be 18 in August and has just finished at the children's cardiac unit at Alder Hey Children's Hospital in Liverpool and is awaiting his first 'adult' appointment at Broad Green hospital in Liverpool - we live in the West Midlands - he will
still be under the same cardiologist. I am wondering if the time has come that I should be 'insisting' that Nicky starts taking medication for his PH but I feel the longer we can put it off the better but maybe I am wrong. Sorry for the rambling, some of you know what it
is like living on a knife edge with our children but most parents can't begin to imagine what its like for us.
Pauline UK
&
Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
I think you'll just have to trust the doctors. You can only do what you can do... the rest is not in our hands. We all have to make potentially difficult decisions. I know that when I have had such decisions, I just decide and then ask G-d to give me success with that choice. (Don't mean to insult anyone who may not believe...)
