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Gastrostomy support thread no.2! Tubefed children support thread

972 replies

Isitme1 · 25/11/2012 14:44

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

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Isitme1 · 25/11/2012 14:48

old thread

For those who want to read the first thread
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2old2beamum · 25/11/2012 15:03

thanks grandaughter I can now rest in peace now I know a new thread has started.

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Isitme1 · 25/11/2012 15:36

:)
Granny midwife

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starfishmummy · 25/11/2012 19:16

hello!

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sneezecakesmum · 25/11/2012 21:42

Hi all. DGS puking tonight, looks like a nursery bug. Tummy now empty so keeping water down via tube. Luckily he's built up a bit of immunity and its very minor, apart from the horrible smelly farts Grin Think tomorrow with be OK Smile

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BeeMom · 26/11/2012 15:17

I am still around, just busy as anything and trying to work as a "cyclops".

Bee and DS both have colds, I am seriously considering shrink-wrapping myself to keep from getting it.

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sneezecakesmum · 26/11/2012 16:15

Its definitely that time of year! Bugs galore! Grin

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Isitme1 · 26/11/2012 17:03

Aww hope they get better soon

How is little bee?

Ive had an eventful day today. This morning I had blood when I wiped myself after a wee so I rand epu.The nurse was very nice and she said all my symptoms add up to ectopic pregnancy. (Pain in shoulder, diarrhoea, pain on one side same side as shoulder)The blood is literally streaks in mucus which to me seems to be urine infection as I suffer a lot with kidney disease. She couldn't explain bleeding or pain in shoulder. I see cm mw tomorrow will let her know too. I saw baby bean. Measuring 6weeks+ (few days ahead of what I thought) and a very big amniotic sac (if that's what you call it lol) Heartbeat going nice anf strong tooStill a bit uneasy though about this blood X

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gallivantsaregood · 27/11/2012 11:23

Isitme: So glad Baby Bean is where he/she is supposed to be...phew! Hope you can get all your other aches and pains sorted soon.

Sorry haven't been around. Quite busy here. In the process of matching with a LO who will hopefully become the 4th member of our family.....so lots of meetings etc. Please send positivity and keep everything crossed he can come :) We are so nervous and excited too. He is only ickle and so cute :) xx

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2old2beamum · 27/11/2012 14:47

Galli my thoughts are with you, very exciting but nervewracking time.Sending very positive vibes and hope all goes well. Let us know more when you can Smile
I am afraid our front door is now locked and have changed the key!!

DGS hope you are ok and DGGS is "behaving" himself

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Isitme1 · 27/11/2012 16:00

sending positive thoughts and loving vibes your way
Im sure they realise how much of a good mum you are!!!

How is everyone!
Ive got horrible heartburn!!! Just want to cry. It's disgusting!
I had ice cream 20 mins ago and it soothed it a little but it's back worse than before x

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gallivantsaregood · 27/11/2012 17:35

Isitme : YUK!! Not as tasty but iced water is much better. Afraid the fat in the ice cream makes your tum produce more acid!! Same goes for milk etc.... Give it a go. Hugs

Thanks for the well wishes. Very nerve racking. We have been in this position befor eand it didn't work out ( nothing to do with us. High heid yin who made a big blunder!!) so still not certain that it's certain. He does have additioinal needs (but no tube). IF he comes then he'll be here 'forever' :) So excited, nervous and anxious all at the same time............Meeting with current carers very soon too, which will be more nerve racking than meeting the SWs tbh....just hope they like us

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sneezecakesmum · 27/11/2012 21:59

galli. All fingers x for your little cutiepie to be in your arms soon. Very nerve wracking for you.

Isitme. DD commiserates with you. She feels a lot better now its the 2nd trimester.

DGS now happy to sleep in his cot. Stick him in, say goodnight and off like a light with never a murmur! DD kicking herself for not trying it sooner!

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gallivantsaregood · 27/11/2012 22:47

Sneeze that's great re DGS sleeping :-D

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Isitme1 · 27/11/2012 22:56

Thanks will try that
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Aww thats brill he sleeps like that. Seems like you've copied me lol
We kind of use the same approach lol


Sneeze I feel like ughhh
Just tired and poo
Ive got to bloody cope with ds going into hospital on Friday too!!
Dh is staying 2 nights with us which is brilliant

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sneezecakesmum · 28/11/2012 12:16

Having horrible problems with constipation. DGS has had vomiting problems for the past year. Paed did nothing to help except dietician who said reflux. Duh!!!

Anyway in the process of switching to BD which has been well tolerated and we were steadily learning about how and what works.

Anyway on Sunday he had a vomiting bug (pretty sure it was that as bit too violent for normal reflux) And since then vomiting loads of his overnight formula. Kept down 100 mls of chicken dinner BD last night. Then puked at midnight. Was very constipated (not gone in a week). Now just delivered a baby! After lactulose and a suppository, just as DD went out and spent over £7 on movicol! Typical.

What should we do. Give the movicol? No formula overnight? No food only water? Continue on only BD? We are so confused. The vomiting is not continuous and SHOULD get better now he's not constipated. Can't see the wood for the trees at the moment, Confused.com!!!

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Isitme1 · 28/11/2012 14:40

I would be tempted to try little amounts but more frequently if that makes sense.

Im sure everyone else will be here to help soon x

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Isitme1 · 28/11/2012 14:42

Ooo yh paed told us that he will be sick if hes constipated as its almost like its the only way for the food to go if theres a massive block of crap down there.
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gallivantsaregood · 28/11/2012 14:44

Oh Sneeze. Poor DGS. Why dud DD have to pay for movicol? Get it on prescription here. Cant buy the paediatric one, prescription only.

Now he has moved, his about 24 hrs if dioralyte and plenty of it to flush him out ( only is blood sugar and fluids aren't an issue.

If you are continuing with BD you are in a great position to use food instead of ends to keep him going. 5g of flax seed in a blend is enough to get DS going.or pure orange juice.

You can make some of his fluids fruit juice, use prune juice if needed ext. I'd suggest giving one of the above on the 1st day he doesn't go. There's less likely to be a huge build up then. We do this and have no probs at all any more.

If it continues to be a problem naybe add a little flax seed each day. Alternatively you could try Benefiber which is a soluble pure fibre powder? No need to worry about blending the seeds then which can be tricky if you don't have a Vitamix.

Previously DS' gut was so weak that although his poo was like water (chronic diarrhea) without sennokot his bowels didn't move at all!!

Hope that helps xx

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sneezecakesmum · 28/11/2012 17:03

She bought the paed one from Lloyds over the counter. While she was out buying it he poo'd!!! She was getting so stressed couldnt be waiting for an appt so paid up!

Isitme. We have finally worked out that being constipated makes him more pukey and it was a week this time and the one before Sad

galli I dont think DGS has any intrinsic bowel problems or even slow digestion, its just getting the volumes and the vedge/fruit right. We are also at the testing for allergies stage and did put a drop of flax oil on his tongue today and he didnt react. Very cautious as his lips swell up with white fish (or even chips fried with white fish!) So thats slowing it all down too. I'm convinced its the formulas that dont agree with him much so v anxious to get going with the BD and minimise the formula use.

DGS is smelling of ketones so burning off his (minimal) body fat atm. which also stresses us out! Hes had orange juice and been OK. Think I am being impatient and just want to go full on BD and fatten him up but have to take it slow because a) tummy is still fragile and b) need to test for allergies

DD Has bought a Villaware jug blender and it is fabulous!!!! Whisked up banana, stewed pear and apple and baby rice thin enough to suck into syringe. Brilliant. I've also got an unused coffee grinder which can grind nuts into powder she can have so we are panicking less now Smile thanks girlsxxx

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gallivantsaregood · 28/11/2012 20:07

Sneeze: if ged burning off ketones can you up his carb intake if 'safe' carbs like potatoes, rice etc?

Good news is tgatcwill if it is intolerances he gas they may get better with BD. Luuk was intolerant to LOADS if things bad we are /2yrs later) his being able ti slowly reintroduce things which previously bade him really ill, like honey and eggs... :-D

Have heard good things about the villaware. Might invest in one for MILs house in Holland

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gallivantsaregood · 28/11/2012 20:09

Re the movicol ( and similar meds etc). Here in Scotland we have a system where chikdrrb ( and people on certain benefits) can get thus kind of stuff prescribed by pharmacist so it is free. Called Minor ailments system.....

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2old2beamum · 28/11/2012 21:01

Re movicol I find it quicker and easier to pay up and get it quicker via the pharmacy. My logic mentally is I do not pay for his food!! And GP system not up to speed with my "odd" DC's

Galli I understand where you are coming from re fostercarers 2 of ours could have caused a placement breakdown one because we were not christians and another they wanted to keep him but did not want to adopt him?????
My thoughts are with you xx

Oldsneeze Sorry you are having problems, hope DD is not too stressed Old fart is snoring on sofa Wink hope you understand

DGS hope all is well with you I think of you often

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sneezecakesmum · 29/11/2012 20:06

galli. thanks DGS puked again this morning once. DD tipped out the overnight formula and put boiled cooled water, but puked after his breakfast blend, banana apple porridge, not all of it. Tolerated boiled blended potato (yuk) but the nanahead gave him milk formula which he puked. He pukes the formula even when well.....obviously baby brain! to be fair she has also got the bug in a minor way (churning gut!) so not thinking straight. Definitely get a villaware, we were so impressed. Not dehydrated as soggy nappies but looking very skinny...arghhh!

Giving one movicol sachet a day till the BD can take over, but we have to wait for the tummy to settle. We wont carry on paying but get a px if it needs to carry on, but hoping it can be stopped. So frustrating as we are sure this BD is the answer and we are raring to go with the food preparation now we have the tools Grin Tested flax oil and peanut butter and was fine Smile

Adoptions are seriously stressful situations. Hope it all goes smoothly. Unbelievable that someone would block an adoption cos they wanted to continue to foster. Then what chuck him out when he got to big, like an unwanted christmas puppy?

Old fart here is just a pain in the bum as he doesnt know what a duster is!

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gallivantsaregood · 29/11/2012 22:55

Sneeze: poor DGS. Us he naybe having a wee struggle with dairy? Oats are also common for intolerances..... D S didn't manage anything oat related for a long time.

The LO who will hopefully be coming to join our family will be coming on a permanent fostering basis. With his additional needs it means he is more likely to get access ti services he needs and support will be on hand for us too if we need it. However although he will technically still be fostered he will become our 4th family member and will be cared for and loved just like DS and we'll be there for him ALWAYS x

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