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Gastrostomy support thread no.2! Tubefed children support thread

(973 Posts)
Isitme1 Sun 25-Nov-12 14:44:35

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

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Isitme1 Sun 20-Jan-13 09:03:51

Ds has a horrible cold so I can expect him to go back a few steps.
Baby has clear ulcers that are yellow inside in his mouth? ??
So mw is coming to check them x
How is everyone? ?
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sneezecakesmum Sun 20-Jan-13 20:16:50

Internet is back, it was the router! talktalk tried to charge me £35 for a new one or £50 for an engineer. Told them to send me a free bleeding router! so they did grin

My old fart says he cant close the toilet lid in case he forgets to flush the toilet confused He is basically lazy! Think most men have a missing gene that means their head is in their backside most of the time looking for it grin

Poor tired DD 5 hours sleep! My giddy DD is 30 weeks now and entering the 'lumbering elephant' phase. Gone out of the blooming one now and just feels 'blooming' huge! Do not envy her one jot!

Snow down in 2old country is heading our way. so not looking forward to snow, cold wet and nasty.

Hi to galli and isitme and any others who pop in xxx

Isitme1 Sun 20-Jan-13 20:28:25

Aww, but she gets to meet baby soon!!!

Glad you got a free router!
Unless you ask you wont get lol.

Theres been bits of snow here. I hate it I cant get anything don3 out of the house or the washing as the dryer hose sticks out of the window and its too cold to have window open!!
Got a lovely smile of the little baba!!
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sneezecakesmum Mon 21-Jan-13 21:39:45

I can see you are already bonding with your new baby brother smile So nice though to hand him back when he cries grin

Giddypants Tue 22-Jan-13 09:03:34

need to moan a bit why can't the feed pumps have a setting where when the feed has finished in the morning it just turns itself off quietly, why with all the beeping at 6:00 (not a morning person) which just wakes DS up, and then he's awake, and I'm like a zombie all day!

Gggrrrrr!

2old2beamum Tue 22-Jan-13 11:35:58

What a brilliant idea. Why don't you suggest it to your supplier. Mind you @ weekends I set feed at a slower rate so I can have a short lie in smile
Any way how are you How dare Oldsneeze call you a "lumbering elephant"
I would call you gracefully pregnant.

Oldsneeze wish I could find an automatic closing toilet seat and lid (may cause a painful accident blushgrin Hope you are both feeling better.

DGD hope you and LO are ok xx

Mine have just got back to school after 6 lazy days. DD has found out the cat is a good toy I am sure the cat grinned when the wheelchairs went out the front door.
BTW I did DD's infusion all on my own on Friday.
xx to all

Giddypants Tue 22-Jan-13 20:15:29

Yes old sneeze very rude (however an element of truth) grin

I may e mail the company see if they do one which just shuts off without all the bleeping.

DS is just settling off to sleep, I love watching so cute, I don't however love him waking up in the middle of the night to watch night garden!!

Isitme how are you getting on?

sneezecakesmum Wed 23-Jan-13 21:00:34

Gracefully pregnant? I swear she was picking fluff out of her bellybutton today saying she was looking at the kicking!! grin grin

Have finally got a computer to function again after weeks of hair pulling so DGS can have his lovely touchscreen monitor to play with again smile

Isitme1 Thu 24-Jan-13 08:31:44

I have no hesitation t6yyyyyc gggcxccggggdxszAaaa
6reWw
Sorry d's 4hthgyt33 and the rest 44 jyoy8ihiiiiuik

Ds has decided he wants to join in. And his lion doee too.

Like I was saying. No info for bleeping machines in the morning as we dont do over night feeds.
Ds has been constipated for 7days+.
Gp said go a+e.
And the poo'd there. hmm
The movicol and lactulose hasn't helped.
He only did a bit but the gastric was happy with it.
His leak has started again.
And ive decided to keep food diary for him again
Ive got a horrible cold/sore throat and ds has had it. Feel pretty poo. Appetite gone again. And hormones raging all over the bloody place.

Well done granny for doing it yourself! !

Welcome back sneeze
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How are you doing giddy? Ds?
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sneezecakesmum Thu 24-Jan-13 09:38:00

Does DS eat enough orally now to have regular bowel movements? how much does he drink? Is that why he gets so constipated do you think? What does he have down the tube? Just trying to get a picture as DGS used to go up to 7 days too and it was awful to see the pain he was in. He now goes daily and nice and soft with the blended diet. Could you just give extra water down the tube if that's the problem. We have a prune feed for emergencies but have never needed it yet grin

Isitme1 Thu 24-Jan-13 10:34:35

I used to use prunes but it didn't help.
He has 700mls of neocate advance and about 500-600mls of water.
Hes on omperezole domperidone erthroymicin iron movicol and lactulose when needed.
He eats at nursery if its finger foods.
Hes hardly ate in the past week.
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gallivantsaregood Thu 24-Jan-13 11:21:28

Isitme: when DS was on formula te would get' 'constipated' even though his poo was always liquid. His gut just didn't move. Movicol didn't work, actualize made him puke. The only Jed your ds is having that my ds didn't was the erythromycin.

What we had to do was give him Sennokot. Without it he didn't go at all. Not sure if the fact it was pure liquid, meant his gut which is slow anyway, didn't feel there was anything to push along?

Now with BD ge doesnt usually have any problems. If ge doesn't go 1 day he usually pukes everything the next. So now if he doesn't go a bit of flax seed in his breakfast gas him moving in hours :-D. You can buy it already ground up but nit sure if it would go down the tube as I always used the Vitamix. Xx

gallivantsaregood Thu 24-Jan-13 11:22:18

Sorry for the typos.....AGAIN!

Isitme1 Thu 24-Jan-13 12:07:31

The erthromycin helps.

Another question.
Ds had bm today and he had streaks pf old blood in his poo. A lot of them.
Its not because he has strained himself as when that happens its red blood.
He still has passed the block of stool but he has passed thick water like stool of that makes sense.
What do I do?
Dietician said up the movicol amd put cloudy pear juice down his tube.
I know gp will say go to hosp.
I will say make sure you ring to say hes coming up.
It is worrying. What do you alp recommend? ?
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Isitme1 Thu 24-Jan-13 12:08:05

He also looks disgustingly pale today and has complained of bum hurting amd tummy x

Giddypants Thu 24-Jan-13 15:22:38

Isitme, I'm not sure re the blood, but the drugs (erythromycin and donperidone) that he is on is only to help the stomach and gut absorb the food, not make it mobile if you know what I mean?

DS. Would get constipated on the milk feeds, even if it had added fibre, and would go for 7days + very worrying, and harrowing when he did actually go because it was so painful for him.
Like galli the bd has done wonders for his bowels he goes every or every other day without any help from meds etc, maybe something to consider for the future?

Iron can also cause constipation, is he on any multi vitamins like ABIDEC?
The loose stool could be overflow because of the constipation. Is neocate the part processed milk? If so it may not be providing enough solids for him to pass on a regular basis and so it just builds up, also the longer that it's in the bowel the dryer it gets which causes constipation.

Hope he is feeling better soon x

Isitme1 Thu 24-Jan-13 17:34:09

Thats what the erthroymicin was prescribed for to help with reflux and the side effect of loose stool was supposed to be added bonus.
Overflow is still coming.
Im still waiting for the hard plug which hasnt come yet.
Rang gp he said suppositories are next on the list. I said hes a small child he wont sit for that and it will just create another aversion.
Rang cn she said ring gastrics sect.
They have booked him in for Wednesday and said if he gets 'ill' go yo a+e and dont let him go past sunday x

Giddypants Thu 24-Jan-13 17:59:22

Poor wee boy sad erythromycin can cause loose stools in some people, however I think it has to be the anti biotic dose, not the pro kinetic dose, (which is much reduced)but I suppose it depends on how sensitive the tummy is, I've had erythromycin and never had the trots! <constitution of an ox>

We had to go down the suppository route with DS a few times, must admit it did work, but he did panic with me fiddling around in his bum area when he was already uncomfortable down there.

Your cn is not very helpful!

Isitme1 Fri 25-Jan-13 11:18:00

Hes straining so he defo is constipated.
He had black crystals in his overflow this morning? ?
Any idea why? ..
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Giddypants Fri 25-Jan-13 12:26:42

Not sure with the black crystals, bananas give you what look like black worms, maybe have something to do with the iron supplement which can cause darker or black stools.

How is he in himself? Any temp or vomiting?

Isitme1 Fri 25-Jan-13 13:55:27

Thats what id read last night
Just been triaged and they are calling gastrics down to see him rather than an a+e doc.

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Isitme1 Fri 25-Jan-13 13:56:09

Hes been refluxing more but its silent reflux. And hes got a low grade temp.
Lets see what they say x

2old2beamum Fri 25-Jan-13 14:16:25

Oh Grandaughter what an awful time you are having, poor little man. Sorry I have no words of wisdom but am pleased you are getting things sorted out in the right place with people who know him. Hope they see him quickly. Please let us know how things are or else I shall worry.
Take care X

Isitme1 Fri 25-Jan-13 14:33:39

We are still waiting.
Good thing I bought a sandwich from the canteen before I came in.
This time im all alone as h is being an asshole again and thinks he can treat me like shit. I told him to f off and if you do dont come back lol.
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Isitme1 Fri 25-Jan-13 16:42:09

Well the black stones are what I thought they might of been.
Blood from the upper tract. They took blood to make sure hes not lost a lot and has follow up on Wednesday with his gastric.
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