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Author Topic: Reece goes away for Christmas. Again.  (Read 400157 times)
Colchester Kev
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« Reply #735 on: July 29, 2009, 07:32:32 PM »

Did Dewi not get the lad on the Guinness ??
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« Reply #736 on: July 29, 2009, 07:36:43 PM »

No but I thought it may be nutrient good for him till I thought oh no it is alcohol.
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« Reply #737 on: July 29, 2009, 10:20:48 PM »

Lovely to have you here, welcome anytime thumbs up
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« Reply #738 on: July 29, 2009, 10:47:13 PM »

Is staying at 13.5 whilst not eating well a good sign? If appetite returns now home it
might push up?
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« Reply #739 on: July 30, 2009, 09:31:36 PM »

Is staying at 13.5 whilst not eating well a good sign? If appetite returns now home it
might push up?

Well at least it is not dropping. Had a better try at  tea tonight and found some energy to go to a playhouse climbing kids place as there was only 3 in we let him lose.

Dewi, can't wait to return. x
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« Reply #740 on: August 04, 2009, 12:34:54 AM »

Spent the afternoon at the hossy thinking up plans with Antonino. We have decided to give Reece a bash at eating a full range of food, no restrictions to see if this works as he is looking very thin again, his ribs and bones are showing once more. We have nothing to lose by attempting this, if it fails, we try a different enteral feed, if that fails back on TPN to rebuild him up then more surgery to try and lengthen the bowel more. From  intake of liquid to pooing it takes him 1 hour 30 mins, an average person takes 9 hours. We really do not want to put him through that surgery again.
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« Reply #741 on: August 04, 2009, 11:05:54 AM »

Spent the afternoon at the hossy thinking up plans with Antonino. We have decided to give Reece a bash at eating a full range of food, no restrictions to see if this works as he is looking very thin again, his ribs and bones are showing once more. We have nothing to lose by attempting this, if it fails, we try a different enteral feed, if that fails back on TPN to rebuild him up then more surgery to try and lengthen the bowel more. From  intake of liquid to pooing it takes him 1 hour 30 mins, an average person takes 9 hours. We really do not want to put him through that surgery again.

Fingers xx'd.

What does Feece think of the idea of being able to eat "anything"?
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« Reply #742 on: August 04, 2009, 11:10:29 AM »

Spent the afternoon at the hossy thinking up plans with Antonino. We have decided to give Reece a bash at eating a full range of food, no restrictions to see if this works as he is looking very thin again, his ribs and bones are showing once more. We have nothing to lose by attempting this, if it fails, we try a different enteral feed, if that fails back on TPN to rebuild him up then more surgery to try and lengthen the bowel more. From  intake of liquid to pooing it takes him 1 hour 30 mins, an average person takes 9 hours. We really do not want to put him through that surgery again.

Fingers xx'd.

What does Feece think of the idea of being able to eat "anything"?

He wanted to go straight to Kentucky, which we obv did.
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« Reply #743 on: August 04, 2009, 11:25:33 AM »

Spent the afternoon at the hossy thinking up plans with Antonino. We have decided to give Reece a bash at eating a full range of food, no restrictions to see if this works as he is looking very thin again, his ribs and bones are showing once more. We have nothing to lose by attempting this, if it fails, we try a different enteral feed, if that fails back on TPN to rebuild him up then more surgery to try and lengthen the bowel more. From  intake of liquid to pooing it takes him 1 hour 30 mins, an average person takes 9 hours. We really do not want to put him through that surgery again.

Fingers xx'd.

What does Feece think of the idea of being able to eat "anything"?

He wanted to go straight to Kentucky, which we obv did.

Result!

The things kidz will do to get some KFC. Don't blame him, either, it's the basic food of life.

Seriously, has he shown any medical or physical reaction to "normal" food, & has it bought about an interest in eating more, &/or more often?
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« Reply #744 on: August 04, 2009, 11:41:54 AM »

Not too sure of any increase of eating as only yesterday afternoon that it was decided much against his dieticians approval, but Antonino thinks we need to give it a go, it has never been actually proven that a regular diet causes increased runny stools in Reece but it was thought that that was what was doing it, but now he has been on such a restricted diet,  and still had the watery and frequent stools, we need to give it another go, nothing to lose now.
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« Reply #745 on: August 06, 2009, 06:23:01 PM »


How's KFC Boy doing Maureen?
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« Reply #746 on: August 06, 2009, 08:56:17 PM »

Food by mouth in take nil. New milk makes him vomit. Back to paedasure vis gastrostomy over night but vomiting most back up at the moment. Spoke to Antonino tonight and going to see how he goes overnight and maybe the weekend but looking like a new line. No interest in food at all. Got him his first paddling pool spent all afternoon filling it, he had no get up n go to play. Not interested in it at all, just like life itself. Looks bloody awful, thin and drawn weight. 12.9.


Struggling. Going to bed now to start again tomorrow. Well set alarm to do feed.
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« Reply #747 on: August 06, 2009, 09:21:24 PM »

Food by mouth in take nil. New milk makes him vomit. Back to paedasure vis gastrostomy over night but vomiting most back up at the moment. Spoke to Antonino tonight and going to see how he goes overnight and maybe the weekend but looking like a new line. No interest in food at all. Got him his first paddling pool spent all afternoon filling it, he had no get up n go to play. Not interested in it at all, just like life itself. Looks bloody awful, thin and drawn weight. 12.9.


Struggling. Going to bed now to start again tomorrow. Well set alarm to do feed.

Ugh, I'm so sorry to hear that Maureen. Another day, another battle.

Everything is crossed for him.

xx
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« Reply #748 on: August 07, 2009, 09:39:22 AM »


I'm afraid it's been a very bad night, even by Reece's standards.

He was rushed into Huddersfield A & E during the night, then transferred to Halifax, where he has been put on a line, rehydrated, & is now officially "stable". He may be transferred across to Manchester today.

You all know the score here - he has no weight on him, & cannot absorb food or retain it long enough to extract nutrients.

If ever the Reece Fan Club Good Vibes were needed, it's now. Send them in copious amounts.

 
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« Reply #749 on: August 07, 2009, 09:42:16 AM »

Thoughts are with you all Mo.
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