Gastrostomy/ tube feeding support group...

[Isitme1]

Hi.
I was looking for a support group for tube fed babies/ children but couldn't find anything.
Come and share you experiences and tell us how you are coping and how you felt when you first started with tube feeds.
I will introduce myself:
I have 1 ds- 21 months old.
Poor eater due to severe reflux and severe food aversion.
At his worst he was fed Baby food via syringe into his mouth like meds. He would take 60 mls a day in high calorie milk and a sip of water or juice in the day with no food in between.
He would scream at the sight of his high chair.

Fast forward a few months and he has a peg feeding tube. Hes on neocate advance ( suspected milk allergy) but have kept him on normal food to encourage oral intake. He still has very little by mouth but thankfully he's getting all his nutrients.
The gp put me down as a neurotic mother.
Ds is being seen by top gastric paediatrician.
He's having gut motility checked as his food is still
In his tummy 10-12 hours later and comes our undigested.

Hes had meningitis and septecmia at a young age too.

Come and introduce yourself!
X

Isitme. No of course it is no BU to ask a sick kid not to spread germs around! It's my daily gripe against nursery!

Apparently you can get dioralyte with rice in it, somewhere...DGS has luckily only had one D&V bug so far and that was his first week of nursery, but sure there will be more to come now its autumn.

Blended diet looks really good and I would love to give it a gp. I used to (pre PEG) cook up lots of lovely natural high energy food for DGS with natural vitamins etc. to fatten him up. Now he only eats mucky tasteless jars and not much of that! Would like the challenge of blending highly naturally nutritious foods for the tube. Think most of the vomiting is reflux but there is an element of behavioural too. So if we stop the reflux vomiting the other may also stop. This did happen with the peg at first so no idea why it's gone backwards?

Isitme no you are not being over protective regarding illness. I am now very fussy about bugs now DD has dx of autoimmune problems luckily most people are understanding.I think D&V is my pet hate. When in hospital a resident motherv was throwing up in a bowl behind the curtain I was livid and reported it. Guess what the poor little baby in next bed caught it ++
Oldsneeze I did wonder if DS's puking was behavioural until we found he had a minute stomach bulging into chest cavity.
Galli hope your LO is a bit better today. Hope all is well with you all.

Its just all kicked off all of a sudden because of it.
Ah well.
We've spent more time at our home rather than going over to the parents house today.
Its soooo nice and peaceful!

I had dinner cooker by 12 and I will have tea cookee by 3.30 hopefully. Dh comes back from work at 5.30 and ds will need his food at 4.30 so if its done its sooo much easier
Going food shopping tomorrow as weve just got fruit, ice cream, yoghurt and maderia cake left

Ds has had the dv bug a few times. Not nice. When I was in Pakistan the last time he picked something up and there version of diarolhyt is a lot better than what is available here. I got dh to ship some over too. X

X

If anyone needs any let me knoe ive got a few sachets left if needed..
X

Just remembered that ginger ale works a charm for upset tummies. I gave ds 15mls last time and that also helped

X

???

Sorry Dearest GD a bit hectic here. Visited realy good friends yesterday (in similar situation to us) had a brilliant day. Tomorrow 1st time since July I will be childless from 07.30-16.30 NOW do I slob out or do all vile jobs that need doing. Just packed schoolbags -medicines, consent forms, batteries for HA's and CI's etc etc list endless!!
Hope DGGS is ok and DH love to both
Hope every else is OK
XX

Dont forget the sterile water! !!
Will update you later x

Ds stoma is leaking. Not just tiny bits either. Hes having less wet nappies so keeping a close eye on him.

Hes got temp due to cold and bad chest.
Think a visit to the dr is on tomorrow's agenda.

Its saturating his clothes after every feed. Hes seeing gastrics on Thursday. Might ring and see if we can go earlier

How is everything with everyone
X

Oh hell I forgot DD's sterile water!! DS has pods which school keep a supply. Big thanks
x

You forgot last time too

X
Have you done it yet granny?
Out of hours gp has been. .ds is not dry but won't be long until he is so I will ring gastrics in the morning to let them know
X

Isitme. that doesnt sound very good. Ds has a PEG I think? With the dangly tube thing? Bit alarming that its leaking!

Am on the blended diet fb site though DD has yet to put a toe in the water. Awaiting dietician and paeds input on this vomiting.

2old. slob slob slob! (do it, not you are one )

Nope he now has a button in.
He's seeing gastrics on Thursday so trying to persevere.
How is dd and ds
X

Thanks oldsneeze re slob I cleaned out 2 kicchen cupboards plus leanto that we store all medical equipment, pads feeds etc. Both scumbags had a good day at school except DS had a 30 MIMUTE seizure I am sure she meant 30 sec.
How is your DD's pregnancy going it must be very worrying for you all. Intested in blended diet would be interested if you find it works.

Isitme D

Just very quick I'm afraid. Site: DD stone leaks if his button needs more water in the balloon. Well it used to before BD. BD doesn't jean cos it is thick.

Hes lost a lot of weight and thats knocked everything of balance.

Its saturating his clothes.
Just been watching to make sure hes stillhaving wet bnappies.

I ran out of vests over a 3 day period. Hes got at least 30 vests.

The only thing thats stopped it leaking on to his clothes are the tubie whoobies of Facebook. Ive only got 3 left and they don't last a day. Need to order more.

How is everyone
X

Isitme Dearest GD looks as if half my post went down the big black hole last night. Sorry you are having a tough time, losing weight is a concern DD lost nearly 3K while in hospital and there was talk of TPN but since coming home has put some back on.
Hope things improve soon XX

I think thats what they will do until ds stoma dries up and heals a little.
I can see a stay at the hospital coming upfor him
X

Has he has TPN before Isitme? They are usually really reluctant to go there. Maybe he needs a thicker button if he's lost weight.

Hope they get on to of it ASAP. Xx

Completely re buttons but leaking like that sounds dire.

2old Hope DD continues with her weight gain and the colostomy has been beaten into submission at last. Surely DS only had a 30 sec siezure? Nothings ever simple.

DD in fine, putting on weight, 19 weeks but looks more she will kill me Looking healthy and well. Baby bean good so far and having asprin for these arterial notches. DGS (and me) have had a week off after our wedding jaunt. Regrouped mentally and physically and I worked the little bugger to exhaustion did lots of happy exercises with him, till he keeled over at 14.30!

I don't want to seem dismissive (and we have run the gamut of feeding issues, so if you want to tell me to bugger off and stop being a know-it-all please do) but I can think of MANY issues that can lead to (and things that can help) the challenges your DS is having.

Please, if they start to make noise about TPN, question them. Then question them again, and when you are done... keep questioning. Do NOT go into it thinking it is the only way to put weight on him or make his stoma stop leaking. If he can still digest anything or is not critically underweight with severe electrolyte imbalances, you do have time to consider your options - don't let the medical team pressure you.

ON THE OTHER HAND... sometimes a brief period of gut rest helps a lot, so don't refuse TPN out of hand, either.

I will be brutally honest - after 4 years of daily home TPN and with the gift of hindsight, I know that Bee is at least a small portion of where she is because of decisions dh and I have made. She has been at the same time closer to death and healthier than ever before while on TPN. Her liver is failing because of it - she has had multiple very serious infections that have very nearly taken her as a result of the central line. However, she was a 9kg 3 1/2 year old when she started on TPN, had almost no hair and skin you could quite literally see through. She was starving to death due to her inability to tolerate tube feeding. She gained over 1 st. in just weeks after she started on TPN, and has come leaps and bounds developmentally as well.

I have a brutal love/hate relationship with TPN (as is probably pretty evident) so if you want to bounce questions off me, either here or privately, I will answer them the best that I can. I can also offer ideas about dealing with leaking stomas, and will happily post you some of the things we have used/still use to help.

Where is the bloody magic wand when you need it?

It was the out of hour doctor who said they would do the tpn to give his stomach a rest so the stoma can heal.
I've tried that many dressings but they all seem to bulge out with the amount of fluid going into them. Im changing his clothes 2/3 times after 3 feeds and the feed he has at night leaks through too.
The dietician has just said he needs measuring again. He was measuring 2 but they put 1.7 in as it was away from the skin and the 1.7 now looks like that too. Its got 5mls in the balloon and the cn dont recommend we put more in either.
She said she would struggle to put a bigger fr size in and if that moves around too much it would just make matters worse as the skin wouldn't of had time to heal.

I appreciate any advice given as ive always received the 'right' advice of here and thats what we're here for.
So thank you
[Thanks]

Glad dd and ds are doing well
X

It seems odd that the nurse thinks the different length might be causing the leaks as ds's button has been too long for ages and doesn't leak; seems more logical that leaking is due to the Fr size being wrong???

A few suggestions...

1. if it is a Mic-Key button, the balloon can actually hold as much as 10 - try to increase the amount of water in it - you might be very pleasantly surprised. Bee has 7-8 ml in one of her balloons (and we have never had a balloon burst - we use the buttons for 6 months or longer).

2. I totally agree with starfish, too. An increase in Fr size might make a big difference. Also, taking out the button for a few minutes might allow the stoma to tighten up a little (they close quickly) then putting it back in might help (we have done this as a last ditch effort).

3. The stem length will definitely contribute to leakage, but that can be ameliorated by padding under the button. You just have to be careful you don't pad too much, as you can cause the bumper to bury in the stomach wall. Increasing the amount of water in the balloon serves essentially the same purpose, but does not make the button stick out and make it more prone to getting caught on things.

4. Sometimes, just securing the button makes a huge difference. We used to leave an extension attached to Bee's button, then secure it in a Grip lock on her skin. That prevented the button from wiggling around and decreased the leakage and irritation significantly. I have TONS of extra grip locks and would be happy to send you some.

5. Occasionally, leakage from the stoma like that points to other problems - specifically with motility or a spastic pylorus. If the stomach is not emptying, then the formula will take the path of least resistance, in this case through the stoma. Is he on bolus or continual feeds? If he is on bolus, perhaps slowing the rate or switching to longer feed periods and having him carry a pump if necessary (the Flocare Infinity as a good pump, even for very small children) might be the answer.

All the best - this is such a tough place to be in.

Like BeeMom I have a love/hate relationship with TPN. MY beautiful boy was on TPN for 5 years. Sadly he had one line infection too many and he died at 13years. It can be a life saver but I would now be very wary.
Have they thought of jejunal feeding DS is doing fairly well on this
Take care DGD I am thinking of you XX