Post by sethkenzie on Jul 6, 2009 19:06:48 GMT -5
Hi all,
I am having trouble at the moment with my two children and was wondering if anyone else has experienced the same sort of thing.
My children are both on J/G tubes having them inserted over 12 months ago. They are both on continuous feeds and have had to reduce the rate in the past 6 months from 50ml/hour to 35. They are fine whilst not being fed but about an hour after starting feeds they start to get a lot of thick sticky mucus and it affects their breathing especially with plugs. I have changed the positions in which I feed them as it seemed to be worse when they are sitting up as to when they are being fed while sleeping. That seemed to work for awhile but now I am having the same trouble however I do it. They have been on the same formula since starting to be fed via the nasal gastric tube so I don't think the actual feed is the problem.
Is this just the progression of the disease where their bodies are telling me that it is unable to cope with feeding? Or can anyone else give me a suggestion as to what else I can do. It is getting to a point where I hate having to hook them up to the feeds because when they are not being fed they are comfortable and look settled with no signs of distress, but that comes back to the point of do I want them to starve to death?
My son has been in hospital 4 times in the past 3 months with pneumonia and I am being told it is due to the build up of secretions in his lungs. He is given IV antibiotics and is hydrated with IV fluids at the same time. With no feeds going through his system he gets over the pneumonia and looks settled and happy. We go home again and within a few weeks it starts all over again.
Is this the sort of thing that comes towards the end stages and if so has anyone any suggestions as to what I should do?
Kind Regards
Jocelyn
I am having trouble at the moment with my two children and was wondering if anyone else has experienced the same sort of thing.
My children are both on J/G tubes having them inserted over 12 months ago. They are both on continuous feeds and have had to reduce the rate in the past 6 months from 50ml/hour to 35. They are fine whilst not being fed but about an hour after starting feeds they start to get a lot of thick sticky mucus and it affects their breathing especially with plugs. I have changed the positions in which I feed them as it seemed to be worse when they are sitting up as to when they are being fed while sleeping. That seemed to work for awhile but now I am having the same trouble however I do it. They have been on the same formula since starting to be fed via the nasal gastric tube so I don't think the actual feed is the problem.
Is this just the progression of the disease where their bodies are telling me that it is unable to cope with feeding? Or can anyone else give me a suggestion as to what else I can do. It is getting to a point where I hate having to hook them up to the feeds because when they are not being fed they are comfortable and look settled with no signs of distress, but that comes back to the point of do I want them to starve to death?
My son has been in hospital 4 times in the past 3 months with pneumonia and I am being told it is due to the build up of secretions in his lungs. He is given IV antibiotics and is hydrated with IV fluids at the same time. With no feeds going through his system he gets over the pneumonia and looks settled and happy. We go home again and within a few weeks it starts all over again.
Is this the sort of thing that comes towards the end stages and if so has anyone any suggestions as to what I should do?
Kind Regards
Jocelyn