Daire still no better.

[Guest guest]

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.