Re: Daire still no better.

[Guest guest]

Can you not just turn up at the nearest A & E hospital with Daire? We have done

that with Chloe in the past for various reasons (ill health) and chances are she

would be admitted.

Dom

Daire still no better.

Hi All,

Daire is still no better than he was on Monday, he's a lot more

agitated if anything. We have up'd the amount of Nutrison Soya he's

getting. It's now 600mls Nutrison with 200mls water over 4 feeds in

the day. This has 60mls Procal shots in it to help him gain weight.

He's being flushed with 60mls before and after all feeds as well as

after his antibiotic.

He's not smiled at me in ages, I'm finding it really tough to watch

him be this low. He's now only happy when he's in bed. He won't hold

my hand. He's not even pulling at his feeding tube - which he's done

since it went in nearly 3 years ago, hence the fact we've had to put

it up the leg of his trousers when feeding him. He's not giving

anyone a response or even acknowledging there presence, which is very

unlike him. He's known for his beaming smiles and dirty laughter.

He's just no energy, to be my smiley boy anymore.

My mother was here today, she asked why I've had no interest in

cleaning the house, or in Christmas this year. I told her that I

didn't know! She said she'd hate to be like me and have no interest

in anything. Can she not see what I can?, is she in denial?

We brought Daire out in the car - down to my cousins house, he cried

for most of the time he was there, he spent the rest of the time

moaning or whinging, no matter how much attention he got.

I'm really treasuring the time we have with Daire, more than I have

up to now.

I hope that he comes back from this, but the longer it goes on the

less chance I think there is of this happening.

I rang his Paediatrician today, she told me there was nothing

medically they could do for him, as he was hydrated (wetting nappies)

and now keeping down his feeds. Plus he was being seen by his GP and

on an antibiotics. So I asked her if she thought he was dying - She

replied by telling me " If this was to happen my concience should be

clear as I had done all I could for him and then some over his short

life! " I was shocked and disgusted that she didn't feel he warranted

an appointment with her ASAP. That she was happy to let me carry on

caring for him at home, as he wasn't medically sick enough to be

admitted. That he didn't warrant investigation as to why he is the

way he is.

I'm going up to Dublin tomorrow with him (and his 3 siblings) to get

trained up on his new Infinity pump. I think if he's still as low as

he is now, I'll bring him down to another Paediatric Hospital and see

what they think of him. I am really worried now he's 3 days on

Antibiotics and no real improvement. He needs something done and fast!

Will keep you informed.

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11:29

[Guest guest]

Dear ,

Please don't be offended by this, but if you have time to be on the internet

getting sympathy for your son's condition. You have time to be figuring out how

to get him to a hospital that can help him. Maybe, you should be asking

pertinent questions about where you can receive help for your son. I have a

hard time believing you would be taking him out to get training on a feeding

pump when he's in this condition. We have the infinity feeding pump for our son,

and the homecare company would be happy to explain how to use it over the phone.

I know you are distraught about your son's condition, but it's time you started

getting answers and using your head!

Sincerely,

(USA)

dairewendy wrote:

Hi All,

Daire is still no better than he was on Monday, he's a lot more

agitated if anything. We have up'd the amount of Nutrison Soya he's

getting. It's now 600mls Nutrison with 200mls water over 4 feeds in

the day. This has 60mls Procal shots in it to help him gain weight.

He's being flushed with 60mls before and after all feeds as well as

after his antibiotic.

He's not smiled at me in ages, I'm finding it really tough to watch

him be this low. He's now only happy when he's in bed. He won't hold

my hand. He's not even pulling at his feeding tube - which he's done

since it went in nearly 3 years ago, hence the fact we've had to put

it up the leg of his trousers when feeding him. He's not giving

anyone a response or even acknowledging there presence, which is very

unlike him. He's known for his beaming smiles and dirty laughter.

He's just no energy, to be my smiley boy anymore.

My mother was here today, she asked why I've had no interest in

cleaning the house, or in Christmas this year. I told her that I

didn't know! She said she'd hate to be like me and have no interest

in anything. Can she not see what I can?, is she in denial?

We brought Daire out in the car - down to my cousins house, he cried

for most of the time he was there, he spent the rest of the time

moaning or whinging, no matter how much attention he got.

I'm really treasuring the time we have with Daire, more than I have

up to now.

I hope that he comes back from this, but the longer it goes on the

less chance I think there is of this happening.

I rang his Paediatrician today, she told me there was nothing

medically they could do for him, as he was hydrated (wetting nappies)

and now keeping down his feeds. Plus he was being seen by his GP and

on an antibiotics. So I asked her if she thought he was dying - She

replied by telling me " If this was to happen my concience should be

clear as I had done all I could for him and then some over his short

life! " I was shocked and disgusted that she didn't feel he warranted

an appointment with her ASAP. That she was happy to let me carry on

caring for him at home, as he wasn't medically sick enough to be

admitted. That he didn't warrant investigation as to why he is the

way he is.

I'm going up to Dublin tomorrow with him (and his 3 siblings) to get

trained up on his new Infinity pump. I think if he's still as low as

he is now, I'll bring him down to another Paediatric Hospital and see

what they think of him. I am really worried now he's 3 days on

Antibiotics and no real improvement. He needs something done and fast!

Will keep you informed.

---------------------------------

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[Guest guest]

Dear and Daire... This is absolutely insane... he needs to be admitted to

the hospital..as soon as possible... forget the general pediatrician, he needs

tests, and he needs to be in the appropriate care.. given that... your smiley

boy will be back.

I would climb mount everest if they told me that is what is needed to heal

.

Stop talking about about dying... it sounds like he is just very sick and

needs a caring medical team to completely evaluate him and monitor him

inpatient.

Even a normal child showing those symptoms would be admitted here, at least

for monitoring until normal baseline is established.

Please.. please stop posting about how you think he is slipping away, and get

him into the hospital... there has to be a competent place in Ireland!!! I

mean this with all compassion... take the pressure off of second guessing

yourself, he needs help.

God bless you with strength and healing.

wrote:

Dear ,

Please don't be offended by this, but if you have time to be on the internet

getting sympathy for your son's condition. You have time to be figuring out how

to get him to a hospital that can help him. Maybe, you should be asking

pertinent questions about where you can receive help for your son. I have a hard

time believing you would be taking him out to get training on a feeding pump

when he's in this condition. We have the infinity feeding pump for our son, and

the homecare company would be happy to explain how to use it over the phone. I

know you are distraught about your son's condition, but it's time you started

getting answers and using your head!

Sincerely,

(USA)

dairewendy wrote:

Hi All,

Daire is still no better than he was on Monday, he's a lot more

agitated if anything. We have up'd the amount of Nutrison Soya he's

getting. It's now 600mls Nutrison with 200mls water over 4 feeds in

the day. This has 60mls Procal shots in it to help him gain weight.

He's being flushed with 60mls before and after all feeds as well as

after his antibiotic.

He's not smiled at me in ages, I'm finding it really tough to watch

him be this low. He's now only happy when he's in bed. He won't hold

my hand. He's not even pulling at his feeding tube - which he's done

since it went in nearly 3 years ago, hence the fact we've had to put

it up the leg of his trousers when feeding him. He's not giving

anyone a response or even acknowledging there presence, which is very

unlike him. He's known for his beaming smiles and dirty laughter.

He's just no energy, to be my smiley boy anymore.

My mother was here today, she asked why I've had no interest in

cleaning the house, or in Christmas this year. I told her that I

didn't know! She said she'd hate to be like me and have no interest

in anything. Can she not see what I can?, is she in denial?

We brought Daire out in the car - down to my cousins house, he cried

for most of the time he was there, he spent the rest of the time

moaning or whinging, no matter how much attention he got.

I'm really treasuring the time we have with Daire, more than I have

up to now.

I hope that he comes back from this, but the longer it goes on the

less chance I think there is of this happening.

I rang his Paediatrician today, she told me there was nothing

medically they could do for him, as he was hydrated (wetting nappies)

and now keeping down his feeds. Plus he was being seen by his GP and

on an antibiotics. So I asked her if she thought he was dying - She

replied by telling me " If this was to happen my concience should be

clear as I had done all I could for him and then some over his short

life! " I was shocked and disgusted that she didn't feel he warranted

an appointment with her ASAP. That she was happy to let me carry on

caring for him at home, as he wasn't medically sick enough to be

admitted. That he didn't warrant investigation as to why he is the

way he is.

I'm going up to Dublin tomorrow with him (and his 3 siblings) to get

trained up on his new Infinity pump. I think if he's still as low as

he is now, I'll bring him down to another Paediatric Hospital and see

what they think of him. I am really worried now he's 3 days on

Antibiotics and no real improvement. He needs something done and fast!

Will keep you informed.

---------------------------------

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