Movicol experts? Please help!

[DJAngel]

DD came home from hospital last week with an NG tube in as she was not drinking or eating well, but is managing to eat fine and drinking a little but that may be coz she's being hydrated through the tube..

Anyway in hospital had an x ray that showed impaction of bowel and so we started a movicol regime in hospital.. starting with one sachet about 8 days ago and yesterday up to 8 sachets.

Problem is that dd keeps pulling out her NG tube! Every bloody night! We have tried everything and she is like houdini.. We haven't yet called in the nurses to put it back coz we're feeling like we can't go on like this.. Each time she has it put back in she reacts like we're murdering her and she has got very aggressive and anxious and I'm sure this is why..

We know we can't get 8 sachets's worth coz she hardly drinks at all which is major reason for constipation but if we try to cope without the tube and just get in as much as we can what will happen? We haven't reached the gravy no 7 type poo yet but must nearly be there? Impaction was very high up apparantly..

I've had no sleep watching her as she tossed and turned and fell asleep for an hour and when I woke up the tube was out.. Nightmare.

Any ideas be really grateful for?

I know its distressing but the need for 8 sachets is a lot lovely... i know that if the impactation cannot flush and come out with the help of movicol she will eventually start vommitting it up..... take comfort and reaasurance that its something thats got to be done to keep her well and contact the nurse to come back as in the long run it will be less distressing. with most people once the impactation has come away you can generally keep on top of it with diet and fluids. Generally if nothing can come out you dont usually want to take anything in. My heart goes out to you x

DJ I've been reading your other thread too. I think you should try to call the community nurse and have a chat with her/them as this a dreadful situation for your DD (and you) to be in. Be honest with the nurse about what is going on; where I am most of the community nurses are on good terms with the paediaticians and if yours is, she may be able to have a word with the doctors about what other things they might be able to do to help your DD through all of this

Well, after a day with no tube yesterday, we really struggled to get fluids into her. We were worried she'd get de-hydrated and we only managed to get 3 movicols into her when should have been 8 so we called nurse back this morning and put tube back in. It was awful.

We can't really do it ourselves as she fights and kicks and we struggled with 3 of us to keep her still enough for it to be safe to put in. Very hard. Hospital dr called and said we could consider an enema which would speed things up. Not sure what would be worse.

Feel cross with ourselves for bottling it and wasting a day but we'll have to carry on and hope it doesn't take too long. The community paed nurses are so fab. Todays one said probably see you in the morning then.. DD asleep with socks and sticky tape round her hands and arms.. We'll see..:(

I taped my dauguters NG tube on . I took it from the Nose over the ear depending on which side , around the back of the neck and taped it down her back when not in use.
Then I did like you socks taped on her hands or thick gloves so she couldnt pull it out .

The movcol may seem like alot but 8 is the norma for impaction . The stuff works its fantastic .

Good luck I have ben there and there is light .