taadaa shiny new gastrostomy support thread no.3 tube feeding support

[isitme1]

Taaadaaaa
Welcome to the new thread! !
New and old are welcome here

I have 17yo son with severe depression and anger issues but that's all for me. Eating solids while I had my g-tube was very uncomfortable. I would much rather have just used the feeding tube than to eat, but the doctors didn't want my body to to get how to digest proper foods, so very slowly I added solids back into my body

Pureed was much easier on my gi and I still tend to go back to that if I am in a lot of pain from eating. Have you tried that with your dslost? I don't mean baby food, but chicken is too dry, so if I blast it with some broth in the food processor it is easier for me to digest it.

I did try going down the blendee food once and it made his reflux worse

its sports day at his school today and hes very excited about playing football lol.

There was a lady on here who had 1 dc and adopted another and she gave her ds fully blended. Giddy gives her ds blended too. Theres a Facebook page called bleded diets that helps.

Hes woke up and looks like hes got a nasty infection at his site

Hi all have been up to my eyes in it. As neither of my scallywags eat and have prepacked milk so fortunately have no allergy problems.

Shineyshoes10 I am so sorry about your DD our Beautiful Boy died 12 years ago tomorrow and it still bloody hurts so much.

Scallywags (DS6 and DD5) are in respite tomorrow so will read more thoroughly tomorrow but thought I would get this off.

DGD how are you? Annabel has ?colitis and they are considering POO infusions yikes!! Hope my DGGS's are OK.

BTW I used to make Neocate up every 24 hrs and store it in the fridge and would hang it for 6 hours.

shiney. So sorry for your loss.

Granny you too x

How do you do poo infusions? ? very much lol

ds has signs for it (now has lymph nodes in his colon) but dr wont say it is
His poo right now is bloody, mucusy and stringy with food in it.

Im at the hosp tomorrow. Had a scan last week as ive been getti g pain for yrs and now they've called me in to see urologist even though im under one at another hospital absolutely shitting it

Shoneyshoes10 so sorry for the loss of your dd. TooOld for you and your loss.

I am doing well now, mostly. I had a PICC one and was on TPN for 6 months then had surgery when strong enough and a g/tube and micky button for another 8 months.

This thread was what got me through all the tough times. I felt like I knew everyone on here and would read them and re-read when I got down. I was a 41 year old adult and you were taking care of children with much more severe issues than I had. It would give me a good kick in the bum when I was feeling sorry for myself. I be ever posted because I didn't think I should, I wasn't a child with special needs.

However, each and everyone of you saved me and kept me going from day to day and from the bottom of my heart I truly thank you, appreciate and respect all of you with the highest regards. Much love to all of you and your wonderful children.

Sorry for the typos, my autocorrect thinks it is smarter than I am.sometimes it may just be

Lost I hope they finally get your poor DS sorted out. He has really been through all, so much. I'm not sure How the hospitals work there, but is there any specialists that are near you could be revered to? I know you have just been through the wringer trying to get him the appropriate help. Keep on pushing for answers as a mother knows when her child's night well.

By the way, How are your other 2 ds's doing?

You are more than welcome to post at any time you wish to. And just in case we have any more lurkers who havent posted same to you too.
Its nice to know we've helped someone through a hard time.

ah thinking about ds1 makes me cry sometimes. No one knows what to do with him. Hes in pain a lot but because of the autism some are saying it might be behavioural. Its bloody not! Hes 4 (nearly 5) he sits there smacking himself as he cant tell you about the pain any other way.

Ds2 has scoliosis, bad asthma and eczema. Ds3 has asthma too but hes not too bad thankfully.

Have an appointment today myself.

Not slept much :(

Im surw giddy wont mind...
I messaged giddy about the thread being back up and shes been in touch to say they are all well and el has just had a big op so still recovering.

Hope your appointment goes well. I've been struggling this week with a terrible kidney infection. I thought I would be hospitalized yesterday, but they let me go after some strong antibiotics. Immune systems never recover once they are compromised.

Hope you feel better soon.

Thats what im here for, I have kidney reflux and they are small and scarred from infections etc so they need to keep an eye on them.

Plenty of water to help flush the infection away

Yep, thays what I'm trying to do is drink more water, which is a struggle as it causes my reflex to be worse,

I have also started taking cranberry supplement tablets. The doctor said they can help and I am willing to try anything at this point. The pain has been unbelievable the last 3days.

Hope your feeling better soon.

Thanks everybody, it hasn't been too bad today but have to be "upbeat" for DC's with Downs who pick up on vibes so quickly.

ShineyI may be wrong do you mean cf is Cystic Fibrosis and I can understand the problem (very old paediatric nurse) regarding feeds. DD has autoimmune problems and needs 2X weekly infusions and we have to be very careful BUT we use prepacked milk for her thank goodness.

DGD re POO infusions it is very new but it is done with a poo solution into her bowel to reduce inflammation (not mine I hope ) Another thought Jay went through a horrendous 2-3 months of pain and it was neuropathic pain (he like DGGS is post meningitis) Is now on Propanolol and Amitriptyline and on the whole so much better.

Hope all is well with all, off to bed no 24.00 meds as in respite (Jay& Annabel not me )

Hope you two with wee infections feel better soon.

Sleep well XX

Granny hope you enjoyed your rest!

They have seen something on my rigjt kidney.most likely kidney stones but as I have kidney reflux on that kidney and its a lot smaller and scarred they want a ct scan doing within 8 weeks.

Having problem's with ds2 :( feel like screaming. He just wont eat. Its becominga nightmare.

He fusses having breakfast I alternate between porridge, toast, scrambled egss and eggy toast or fruit and yoghurt.

Most of it gets refused. Hes not drinking a lot either. He will have 1 bottle in morning and 1 at night (most of thr time its half a bottle)

I made that quice in a cup of mn today for him which he ate less than 1/4. He then had yoghurt after.

Tea was chicken veg and mash. He loves veg but wont eat anything else if he see them first lol. He was fussing anf trying to smack spoon away. He die eat a few spoons but waa sick.
He was sick due to coughing. His asthma has got a lot worse and he is wheezing a lot more and becoming breathless while playing. Ive taken him to gp and apparently hes ok. In himself he is apart from his asthma.

Wtf do I do with him?
He wont eat chocolates or sweets or crisps hes very boring lol and the only thing he does really like arw the thomas tank engine yoghurts. They arent big baby can have 3in 1 go lol (thanks dh lol)

Ds1 is passing food in his stool again like hes not digesting it properly.

How is everyone

For snacks he has fruit mainly apples, grapes, mangoes and oranges. But hes not eating like he used to and if he has a small snack he definitely will not eat later

Will do the thing with yoghurt and his milk! Thanks.I knew asking here would be useful lol.
Used to do the whole extra butter/ olivr oil with ds1.
Ds2 is 2 in 2 weeks. He has no allergies that we know. I just think his asthma has just got bad again. I was goimf to buy some peadisure from bootd its £10 for a small tin but they didn't have strawberry which is the flavour he would most likely go for (same as his yoghurt)
ive been in touch with his paed (hes under it for skeletal problems amd asthma) and they've not got back to me yet.
Hes up coughing half the night.

Can you increase feeds for dt1? Ds has lost weight but hes lost weight as we increased his feed as he lost weight but put too much on lol he went to 21kg! He was 19.5 a few days after decreasing feeds and he was 18.8 on the scales at home.

Thank you shiney
if you cant increase volume of feed can you increase the density?

So mixing same amount of feed with less water or maybe adding an extra sachet or half?
It was something like that that our dietitianwanted to try but some kids ewith colitis dont tolerate it so wedidnt (hes not been officially diagnosed with colitis but is pointing that way due to what theu are seeing inhis colon)

Hes having a real bad day today. We are due to move into council housing soon and the 2 we have applied for we went to see today (me ds1 and ds3 ) just to get a feel of the area. Well hea got himself worked up thinking we are moving lol.
Also think hes stirring something as hes bery touchy feely and hes smacking himself a lot more. He said he cant lie down on his tummy or his back I asked him where he ks hurting and bottom of tummy plus a few places at the top

this thread kept me going through a bad time and I was devastated when it went quite. Ladies lets keep this going as im sure it's helping a lot of us. Its a place to unwind and all the shit that's happened during the day and gives us energy to carry on.

for everyone

Ive stopped snacks to see if it will help with meal time eating.
He wont let a spoon go near his mouth unless its got yoghurt on it and even then he fights!

Is there anyway you could,mix a little protein powder in his yoghurt? When my BMI slipped to 17.5 that's what they had me do. They also have me on Promote high protein nutrition shake (that tastes horrendous).

I had a CT scan done yesterday and they found a "growth" on my left kidney. That would explain all the pain that is on that side. Unfortunately, I can't have any other testing done right now. My DF has lung cancer, DM breast cancer and FIL just had a stroke, so I'm putting myself on the shelf for now until things calm down.

ToOld I hope you were able to enjoy the respite and I thought of all of you during your mourning yesterday (or was it today) the times /days have me all messed up with being in, the states... It's 7pm here on Thursday, but says yesterday on my post...times changes always mess with me.

Lost Hope you get in for your CT scan before too long. Thats the only thing I can say about the US, they can get you in the same day most of the time.

Hope everyone has a good evening and are able to rest some.

Oh and LOST, I hope you are able,to get a council house. I know you have been waiting a long time for one. Are you still living upstairs from your mum? Praying it works out for you and it may just be a little easier less stress on your little family. Good luck.

Hello, sorry I've not been around for quite a while, El had quite a big operation a few weeks ago. Had a horrendous week in hospital, including a near fist fight between the patient in the next room and one of the nurses!
That was around mid night on day 2 El was in a lot of pain and just wanted to sleep, and that was going on outside his room!
But anyway we're home now, and he's doing ok, there was talk of a wound infection on his spinal incision which he had a week of anti biotic so for, and explosive poo!
He's doing ok now, nearly back to his old self, but still panics if you go to pick him up, but back to school next week, just in the mornings so they don't forget about him lol
Al is doing well to, still not many words, and the ones he does say all start with a 'D'
Bye Al mummy's going to work, (Al) dye,
Hope everyone is well, must dash.
I've taken up running and trying to diet, (a lot of comfort eating issues) so I need to get out before breakfast x