Coping with a diagnosis

[DonnaBallona]

Our baby son is currently in a HDU in a hospital in London. He has a lung condition and yesterday they told us that he is not able to eat solid food or have anything via his mouth any more. he's been put as nil by mouth for the indefinite future and as a result, he has had a NG tube fitted in his nose and we now have to tube feed him.

I'm devastated for him and our family, and struggling to cope. I'm having talks with the psychotherapist here but wondered how other people cope with a long term, life changing medical diagnosis like this. can anyone help?

x

 

[mummy2o]

I can't really offer any advice to you, but take it one day at a time. However I did work at highly special needs school for a short time for some work experience. These children were wheelchair bound and had very little movement and couldn't talk, just grunt. Any illness they got, could potentially kill them. It really was a very depressing place to do work experience and I never want to go through that again, but really admire the staff and carers that do this day to day. Whilst I was there one of them got a feeding tube fitted. The change in her was unbelievable. She was a lot happier and smiled more, compared to when feeding her as she had so much trouble swallowing. It really improved her performance more and she was happier all round. It is the best for your son and he will be happier rather than being struggling to cope right now, plus he's young enough not to miss it unlike say an older child who can remember what food taste likes. You never know in the future some technology might come out allowing to eat properly again.

 

[chickenlegs]

I can't really offer any advice to you, but take it one day at a time. However I did work at highly special needs school for a short time for some work experience. These children were wheelchair bound and had very little movement and couldn't talk, just grunt. Any illness they got, could potentially kill them. It really was a very depressing place to do work experience and I never want to go through that again, but really admire the staff and carers that do this day to day. Whilst I was there one of them got a feeding tube fitted. The change in her was unbelievable. She was a lot happier and smiled more, compared to when feeding her as she had so much trouble swallowing. It really improved her performance more and she was happier all round. It is the best for your son and he will be happier rather than being struggling to cope right now, plus he's young enough not to miss it unlike say an older child who can remember what food taste likes. You never know in the future some technology might come out allowing to eat properly again.

I work with children with profound and multiple learning difficulties. Being honest, I have never found it depressing. I find it funny, enjoyable and a huge pleasure. Profoundly disabled children have an awful lot to offer. You just need to take it!

 

[chickenlegs]

To the OP, I don't have any experience as a parent and I know that makes a huge difference. But with children in my care, tube feeding becomes second nature very quickly. It only feels "medical" for a short while. I hope he gets better soon x

 

[kit10grl]

I can't really offer any advice to you, but take it one day at a time. However I did work at highly special needs school for a short time for some work experience. These children were wheelchair bound and had very little movement and couldn't talk, just grunt. Any illness they got, could potentially kill them. It really was a very depressing place to do work experience and I never want to go through that again, but really admire the staff and carers that do this day to day. Whilst I was there one of them got a feeding tube fitted. The change in her was unbelievable. She was a lot happier and smiled more, compared to when feeding her as she had so much trouble swallowing. It really improved her performance more and she was happier all round. It is the best for your son and he will be happier rather than being struggling to cope right now, plus he's young enough not to miss it unlike say an older child who can remember what food taste likes. You never know in the future some technology might come out allowing to eat properly again.

This is a horrendous thing to say. The OP is clearly starting down the road of being a special needs parent is this really what they want to read? I would be horrified if any of the people I have to trust to work with my child found her depressing. Completely insensitive thing to say.

To the OP, I don't have any experience as a parent and I know that makes a huge difference. But with children in my care, tube feeding becomes second nature very quickly. It only feels "medical" for a short while. I hope he gets better soon x

This ^^.

When I was first taught how to tube feed I never thought I would remember all the steps and all the equipment we needed when we left the house. She was on a continuous feed so we had to take a backpack attached to the baby with her milk and a feeding pump in the bag. At first it was awful I felt so paranoid about people looking. Very quickly it became second nature and as I gained confidence in what I was doing I no longer cared what people thought. I was feeding my baby and I didn't care what people thought. It was a lot like feeling paranoid about breastfeeding in public to begin with. Feel free to pm if you want to chat.

 

[mummy2o]

I'm autistic and see things differently and always speak the truth. I'm sorry if that offends some people, but that's just me. I knew I was going to hate the placement before I even went there just due to how my brain works. I explained this to my tutor and for some reason didn't believe me. I know they are remarkable children and I do hope they will master their switch so they can but a radio on or watch TV. I just know your child and the OP child aren't going to end up like that and are going to go on and end up having amazing life's.

 

[kit10grl]

Our children might not end up this way but that doesn't mean there aren't mothers of children dealing with these issues on here reading that. I assume you want peole to understand your condition and be a bit sympathetic to your challenges. That starts with you demonstrating that behaviour to others with additional needs