G tube

[mummy3]

Alasdhair is swapping to a G tube, hopefully this wednesday to tie in with an MRI he has scheduled for hydrocephalus. Unfortunately tube feedings are going to be happening for the foreseeable so the ng isnt really suitable. Anyone have an experience in the procedure and what to expect recovery wise? Its planned to go in via endoscopy. Also anyone with experience with hydrocephalus? He had a head ultrasound finally and it showed fluid in 3 areas so now he's going for MRI.

 

[sequeena]

I'm sorry I have no advice but I want to wish you both the best of luck I hope the MRI goes well

 

[chickenlegs]

My son doesn't have a tube but I am a foster carer and have cared for many children with g tubes. The procedure depends on where you are. Generally a surgical tube is placed which is "permanent" and is swapped over to a button at a later date - the buttons have balloons which mean that they can be easily changed at home, plus they are more "flush" with the skin. But in some places they fit a button from the start and stitch it in place. They dont do that round here, but I know some areas do it. Don't know if that is much help - I know there are parents on here with kids with g tubes. Hopefully they will read it!
Ooh and g-tubes are WAY better than NG tubes - no worrying about the place and all that business. (Even though you are supposed to!) Good luck x

 

[mummy3]

Thankyou Sequeena, hope you and Thomas are doing well?

Chickenlegs, thankyou so much!!! I dont know what they'll do buttonwise, I saw his GI last wednesday and pretty much all she said was she was scheduling the procedure and it would be done via endoscopy So you've given me alot of direction in where to read up! We'll hear tomorrow if they've been able to coordinate it with the MRI, fx because that would save him needing to go under twice. Very ready to move away from ng tubes though for sure!!!

 

[sequeena]

We are not too bad thanks struggling with bad separation anxiety right now though

 

[DonnaBallona]

my little boy Jude has severe dysphagia (and macrocephaly actually; but don't know why!) Jude has been tube fed via button since October. he is nil by mouth.

the operation itself was ok, he recovered much quicker than I was expecting, and we saw benefits almost immediatly which I was thrilled about. Jude has special milk, pediasure, through his but nothing else other than water at the moment. we went straight to a mini button, they also stitched his stomach to his abdomen to make it easier to put in and out. We are waiting for him to have a 'nissens' procedure done too, where they stitch up the top of his stomach to reduce the amount of fluid flowing back the wrong way.

I am able to change the button myself at home, change the water in the balloon whilst it's in his stomach, and I have loads of cute little fastener things to go round it which keeps it in place, stops it from rubbing and soaks up any fluid which leaks out (all very normal things)

If I can help with anything or you have any questions, please let me know!

ETA:
Jude is also having his button permenantly too, his swallow is so unsafe he aspirates on his own secretions and saliva even. X

 

[mummy3]

Sequeena, seperation anxiety is hard, it gets to you eventually Does pass though! Does he go to preschool yet? That should help alot after the initial settling period! Whats the little guy been upto lately?

Donna, thankyou so much!! That has helped more than you'll ever know I'm really sorry you're going though similar. Alasdhairs procedures have been postponed, the different departments couldnt coordinate in time (has been massive fires here in San Diego) and the insurance company is arguing about one part of the MRI, the spectroscopy, and its better for him to limit the anaesthetic. He was at his pedi this morning and she actually spoke about him having the nissens. Our little guys seem to be having very similar issues. Alasdhair is not nil by mouth but does throw up more when he gets his formula orally. Is Jude small stature? Has he had a head ultrasound? How is he developmentally? Alasdhair is delayed globally, functioning at about half his corrected age, if Jude is/was delayed did it improve after the G tube change? Sorry for the million questions!

 

[DonnaBallona]

mummy3; I'm so glad you asked that!

before the gastrostomy; Jude was extremely delayed. He was 10 months and completley static; he didn't sit, couldn't roll, only kicked with one leg and even when you sat him up and held him he wouldn't be able to sit-he would topple over. They actually told me there was a chance he wouldn't walk unaided, ever. he also cried PERMENANTLY. literally constantly; it was soul destroying.

TWO DAYS after the gastrostomy, Jude was able to sit up, unaided for the first time. I'm not kidding. he has gone from strength to strength, he is still slightly delayed still now but he's walking!!!!! he was very malnourished before the procedure, he was aspirating severely but nobody at my local hospital had noticed until we went to a bigger one in London. the procedure saved his life.

In answer to your question; yes Jude is small for his age; and his head ultrasound was negative to anything major. (we are going to great Ormand street hospital for children in 2 weeks though where it will be reviewed by specialists). The only issue we're having at the moment is, due to Jude's lack of swallow, he doesn't actually say anything yet. he's pretty mute. I think it's to do with the muscles though and I'm hoping it'll get better with time. Jude has severe respiratory issues due to his aspiration too which can make him really poorly extremely quickly- he has just had his 3rd collapsed lung.

I'm adamant that the button saved his life;and although I'm finding adjusting to life with a tube hard to get my head around sometimes, now it is part of him and I'm quite fond of it!