Long Term Tube Feeding of an older child (toddler)

[Kirsty EW]

Has anyone fed their (older) child by way of nasal gastric tube and/or gastrostomy tube?
Fergus is 16 1/2 months and has never really recovered from his difficult start to life. He's chronicly underweight and undersize for his age and an absolutely appalling eater. :frown:

This time he's been in hosptial for almost 2 weeks while he's force fed by nasal gastric tube. This followed a two week period of completely starving himself of all solids and taking only the smallest amounts of fluids. Anyhow after 2 wks of tube feeding he's now weighing in at a mighty 6.5kg.

Our various specialists are advising that he's going to need a semi-permanent gastric tube so we can force feed him overnight for a few months. Poor little man.
At this stage it's not confirmed, but it looks like Fergus may have an operation next year to have a more permanent gastrostomy "bung or peg" put into his tummy. This will allow us to remove the nasal tube and liquid feed him via a tube inserted via his tummy.

The plan is that they will continue tube feeding him for the next 6 - 12 months. Each night (7pm - 7am) he gets hooked up to a pump which continually feeds him overnight and then he's given bolus push through feeds via the tube during the day around regular meal times (in addition to offering him solids and milk feeds).

So far the tube feeding is proving pretty tricky as he's so good with his fine motor skills he pulls the plug on the tube attachments causing the feeds to spray everywhere. If the current plan holds, he'll be well over the age of two and still being fed by tube. Not sure how we'll go as he will no doubt only get more cunning with the months ahead. We bind his hands every time he goes down for a nap to try to prevent him from pulling out the nasal tube, but this doesn't seem enough to stop him disconnecting his tube from the main supply overnight. Tis very frustrating.

Has anyone had experience with this type of feeding with an older child? Any suggestions on how to make it less tempting/more difficult to disconnect?

[Schmickers]

Oh yeah...I've changed more than a few bedsd full of Paediasure on night shift...

Depending on what your child wears to bed (I'm assuming you're using overnight feeds) one trick is to thread the NG tube through the neck and under the singlet/bodysuit and out of the crotch, which makes access difficult. Or, put it straight over the shoulder, from behind the ear, and coil it and tape it between the shoulder-blades. No way for kids to get at the connectors there.

You'll probably find as you get more used to the tube that the connector will stretch and become slack, especially from having feeding pump sets pushed into it tightly. Make sure you are using an appropriate adapter for your tube to prevent it stretching,a s this makes it disconnect quite easily. You can use brown, elastoplast-type tape to wrap around the connection to hold it together as well.

As time passes, hopefully your child will grow more accustomed to the tube and less likely to try and pull it out, and you can stop binding his hands. I know that in the early days many parents will co-sleep with their child or alternatively, sleep on the floor in their room, which will greatly sleep deprive you and do absolutely nothing for your general outlook on life....

I'll have a think about it and see if I can come up with any other bright ideas for you.

Regards,

Michael

[Kirsty EW]

Hi Michael,

Thanks for replying. Our nurses are not sure what to try next...

Your suggestion about feeding the tube through the crotch might just be the answer. Will have to try it tomorrow night when I'm "back on overnight parenting duty" (DH is staying at the hospital with him tonight).

So far we've been coiling the tube and then taping it to his back during the daytime while the kangaroo pump isn't attached. This seems to work ok outside of the overnight feeds. But overnight he seems to need the extra length from this part of the tube to reduce the chance of him tangling it as he is a really wriggly restless sleeper. Getting tangled in the tube is another way he's been accidently unplugging it. So overnight we have just been taping it (with elastoplast) to the top of his sleeping bag near his shoulder. I take it out through the crotch might mean we can't put him in the sleeping bag, but with summer coming that shouldn't be too much of a problem.

The unplugging is definitely worse since we changed from the temporary green and clear nasal tube to the long term white silastic tube. I think it's because they staff are using a three way plug to attach his nasal tube to the kangaroo pump (so they can flush with water without unplugging). This three way plug doesn't seem to fit as snugly as attaching the tube from the kangaroo pump directly into the silastic tube (using the little red nib thingy to stop it stretching). We're all having so little sleep with the super regular alarming of the pump, Gus tangling himself, the tube getting a kink in it, the attachment breaking free, the Neocate Advace running out etc and that's with us not being responsible for doing anything beyond hitting the nurse call button. I know it's early days yet and that two weeks probably isn't long enough to iron out all the probs, but we're not looking forward to the lack of sleep once we're back home with him in a few weeks...

[Schmickers]

Hmm...my first response would be to get rid of the 3-way tap, as they are not designed for ng tube use and I can't think of any reason to want to flush with water without disconnecting? In fact, if you are using a silastic tube, investigate different brands, as the ones I am used to already have a two-way port at the end, one for feeds, and the other for medications/flushing.

Wriggly toddlers and tubes are always a difficult combination. Would he handle bolus feeds, as opposed to continuous feeding? You could try him with a bolus at night, then, say, six hours of feeds, and another bolus in the early hours, thus reduciong the number of hours he is connected, although I don't know if that would realistically reduce your workload, and bolus feeds can be difficult tmo tolerate at night and reduce normal appetite during the day.

But try taping the tube, it should definitely reduce disonnections.

[melbel]

Hi Kirsty....I have no idea what you are going through but huge hugs to you at what must be a difficult time. Theresa has her daughter on permanent tube feeding at the moment due to food allergies and low weight issues. I wil PM her and try and steer her this way for you.

[Kirsty EW]

Michael, I'll have a chat to the paed and paed gastro about the need for solely continuous v bolus with shorter continuous next week. That might help things. We could wait for him to be asleep before we connect to the continuous feed thereby hopefully reducing the chance of him deliberately tampering with the attachments. Will try taping as well. Thank you sooo much for taking the time to type out your suggestions. I really appreciate it!!

Hi Mel, Thanks for your reply. I had forgotten about Theresa's daughter. Will be really keen to hear how she's managing. Theresa and I have often talked over this forum before due to both having children with pretty serious food intolerances. Would be great to hear how she's managing.

[katanya]

Hey Kirsty

Theresa asked me to pop in to add any advice I have for NGT for toddlers. Felix my son has had 2 "weight gaining stints" once when he was 11months-13 months old and the second 18 months till 22 months. Felix has a chronic respiratory condition (since birth) that affects his weight gain as he burns calories like no ones business, and combinded with poor eating ..NGT.

The firs time I found him pulling it out more TBH when he was younger(11-13 months) every week we were turning up at the hospital to have it reinserted. when he was older (18 montsh -22months) he actually decided to accept it more. The onlt times it came oput was when he had colds and it slide out. Unfortunately he has a unusual nasal cavity and insertion by myself was impossible and everytime they inserted it it was a big deal at the hospital.

as for tips
yep I did the thread through the clothes trick, I learnt this before the NGT as Felix used to be on night oxygen as well and so we had all the tubes running through, like you pointed out having a second anchor point was also helpful.
I am not sure where you are but here in QLD summer it is soo hot and we used ice packs to strapped around the feeds at night to keep them from spoiling. Felix was on a continous feed of 800 mls overnight of pedisure can't remember the rate?

I think for Felix being older he was more aware the second time around socially of his tubes,as people react really weirdly to them, they sort of started and treated him like he had a disability,and I think we was aware of it. He still remembers his tubes and we look at photos and he points to them

as for the permenanent tubes versus the clear tempory ones, TBH if they are being pulled out frequently, the short terms ones are actually softer and easier to reinsert I found, we couldn't insert the permenant ones sometimes due to Felix's cavity and they told me the tempory ones can be left up to 2 months anyhow.

something else to watch is their noses spliting and cracking on the side where the tube is pulled across, you can put vaseline there but changing sides when you can (obviously the trauma of reinsertion can be worse)

One a postive my son is now 2.5 years old and onto the charts, he is eating and thriving on hsi own accord, he'll never be chubby but now has a fair appetite and seems to consume enough to manage growth on his own!I hope we never see another NGT again.

I know exactly how you feel, it's something I would never choose to do again but it helped Felix gain enough for his surgeries and to get his metobolism going again. It is worth the anxiety when you see the bones covered up and their growth continues like it should.

anyhow please email me if you have any more questions, all the best with it!

[katanya]

I just re read what you said, and I have also worked with children with G-tube (gastric tubes) and TBH if it is going to be an ongoing treatment I would choose the G-tube over a NGT long term any day. They make a small hole which closes over when removed and can be completely hidden by clothing, and doesn't get pulled out as easily nor as invasive (I feel) it seems worse at first but long term I too would opt for this.

[Schmickers]

Katanya:

It's interesting you were told the temporary NG tubes could be left for two months, because our policy was always for them to be replaced each week. Obviously, hospital policy tends to err on the side of caution... ... but I was wondering which hospital told you this? Note, I'm not saying they are wrong, just wondering out of curiosity.

...and I don't know if I could NG my own children unless it was an absolute dire emergency. I've had to to tube the child of a close friend once, and that was nerve-wracking enough. Kudos goes out to anyone who would even consider learnnig to do their own child, I think that is very brave.

[katanya]

It's interesting you were told the temporary NG tubes could be left for two months, because our policy was always for them to be replaced each week. Obviously, hospital policy tends to err on the side of caution... ... but I was wondering which hospital told you this? Note, I'm not saying they are wrong, just wondering out of curiosity.

oh absolutely in a hospital setting but in Felix's case they were the best option for us for home use, we had his NGT through the Gold Coast Hospital. It's kind of like in hospital they wont connect up more than a 4 hour feed at a time(policy wise), but they recomend that you try longer feeds at home.

I might add I was told 2 months maximum for the tempory ones, but I think the longest felix kept one in was 6 weeks, obviously they aren't designed for longevity but with toddlers they rarely are in that long, ETA oh and one we had to get one of the tempory ones changed as it blocked and I couldnt unblock it, they aren't the best long term but was the best option for him

oh another thing i used to do is tape the connection between the tube and pump line so it didn't wiggle out at night and leak. we have always co-slept so watching the tubes and kinks wasn't an issue for us (especially with oxygen the cords are much longer and more dangerous)

[katanya]

Oh another thing apparently the permanent tube cost around $90, I used to chuck ours away the first time (considering what they look like ) but when a nurse told me that I would be very careful to rinse it off if I could and bring it in with us again.

[simone]

Ladies, thinking of you... ANneliese was tube fed for 4 weeks as a newborn, and i found that hard enough (her record was pulling out 5 tubes in 1 day!!)

I hope you find something that works for you...

[katanya]

We must have the longer-term permanent tubes I think. Last time Em pulled it out was a few days before the month was up and it needed replacing, so the nurses were OK to replace it, but told me if it came out in less than a month to bring it back because they were very expensive - she didn't say how much though!

Hard to believe such itny thing can be worth so much!

ahh yeah considering how many we went through the first time when I was told I nearly fell off my chair they aren't exactly a feat of engineering !
like the pedisure un-subsidised is $70 a tin! geez

[Kirsty EW]

I'm Milly, one of Kirsty's friends, responding on her behalf.

Thank you for taking the time to respond to Kirsty's question. She is staying in hospital with Fergus 24 hours a day during the week, as the hospital won't let the baby be unsupervised at any stage and her husband works really really long hours. This means K can't get onto the BB site to respond personally.

I'm gong to visit them at hospital tomorrow and will take along some print outs of your responses. K is an amazing woman and has already been through more than anyone I know. I'm sure she'll help Fergus in whatever way she can with the NGT and/or Gastronomy peg. Your tips will make a huge difference to them, I'm sure.

Cheers
Milly

[Kirsty EW]

Happy Christmas lovely mummies. We were lucky to get Fergus home from hospital in time for Christmas so that was his and our biggest present for the year. Thank you for your posts and really helpful tips. We're having a few teething problems with the kangaroo pump now we're home. Fergus keeps unplugging the connection - even though it's taped really securely and his hands are bandaged into mittens he somehow manages to prize it apart with his teeth! Most nights he wakes choking cause he's managed to get the cord tangled around his neck or crying cause he's got it wrapped around a limb and can't move properly. And at least once every day he's been having major vomits as his body adjusts to the volumes we're pumping into him. Not much sleep going on here. He pulled his tube out last night so we're off to the hospital this morning to get it replaced. Aghhhh let's hope he adjusts to it all soon and stops fighting it.

Theresa, Thank you for your very kind offer. I'm completely useless when it comes to sewing. Re-attaching a lost button is about as far as I go. I would be really really love it you could make a little pouch for Fergus. I can send you a cheque or direct funds transfer to cover your costs. xx

Katanya, Thanks for your suggestions. How is your little man doing? Did he get much catch up growth? When Fergus was born he was on the 20th percentile for a baby of his gestation, now he's way way way below the 3rd percentile. I'm hoping we might get some catch up growth (as a result of the tube) to take him back to close to the 20th percentile. Do you think I'm dreaming?

[Mikenzees mum]

I know this an old thread just wondering if there are any tube feeding mums still on here, kenzee had been a tube feeder until 2 months ago, but she didnt go wel at all so she had her tube put back in again today

[Mikenzees mum]

kenzee is 1 year old so not realy a todler but now that she is crawling cont. tube feeds are a whole new ball game compared 2 months ago when she wasnt mobile at all

we have a portable pump i never sold it because i had an idea she would end up back on it but obviously she cant cary it around

How old is em is she on continuos feeds or bolus, has she been TF since she was born on and off

why is that she is TF if you dont mind me asking kenzee is due to servere reflux and DGE and swalowing issues she is having another 2 ops in two weeks and they are both on her tummy so i am going to talk to them about a G tube if she wil stil need TF after the surgery

[Kirsty EW]

And I'm still here to. My DS has three bolus feeds a day and continuous feeds overnight. We're still having no luck getting him to eat. Tis sooooo frustrating!

Mikenzee's mum - sorry to hear you need the NG feeds as well. Hope your DD's operation goes well. What is DGE?

Fergus (my DS) is an ex premmie and has never really got the whole hunger pain, eat message. He has been failing to thrive since birth. At 17 months he weighed 6.4kg he he. Now after three months of tube feeding he weighs 8.2kg. F also has severe reflux and multiple food protein intolerances. We are not sure when he will start eating again. Until his weight improves we can't challenge him by removing the tube. Our gastro wants to get him up to the third percentile for weight before we trial reducing his NG kilojoule intake.

Theresa, Sorry to hear Em is back on the tube. How frustrating for you all. Let's hope it's a short visit back to the NG world. xx