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

[isitme1]

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

Been trying to post for days!

thank you darla
Shiney
the drs are getting very confused with ds. Hes always happy and is always jumping around (this we think is due to asd and adhd plus he has high pain threshold as hes dealt with pain since he was born had meningitis and sepetcmia at 8 weeks)
So when he walks into clinic/a+e/drs they are like why is he here hes jumpimg around. When they see results from bloods and scopes they realise looks can be deceiving.

Hes really confusing me atm. Hes passing black pieces again. Hes only eating chicken.

Ive been suffering a hell of a lot with my kidneys past few days. Think its because im fasting. I kept first8 fasts then came on and kept a few since. Decided I will fast today and skip the others as I dont have to fast due to kidney problems.

Its eid on friday so will be pretty busy with that too.

Im uploading a few pics I took of the stool. You lot might be able to help more than drs lol.

They are crumbling like when blood dries up and crumbles? Thats my only guess as hes only eating chicken. Hes also had some stringy poo

Giddy hope the diet is still going good. You've taken the first steps to being healthier for your dc well done!

Sorry about all the poo!
If it helps him im sure you lot dont mind

Oo ds2 is saying a few things now but wont in front ofothers
mama (baba) dada, baby (for the baby) ball, chuck, go, car, mouse (mickey mouse)
Bath, bot bot, cat dog moo bird tweet tweet, that, yes, no, choo choo for a yoghurt lol juice, kiss, uv u for love you. Duck, bounce, run. Shoes sock
Think thats his list but he had us worried for a while.
Hes quite visual so is learning from seeing stuff. Could you buy al one of them 100 word picture book things? Was going to get him one

Have they said he has colitis? Could this be a flare up?
Spent 10 hours in hospital with both kids yesterday for what was supposed to be a 10 min appointment ggrrrrrr

Hes almost always got this.

Now when he had his scopes in November it showed inflammation to the entrance of thr colon.
Then the one in march showed lymph nodes in his colon which was told it means colitiw but it was only a small amount so will watch him. Will show the dietitian today as shes coming to see him.

Did anyone know about the shortage of neocate advance 100g sachets?

what happened giddy!! Why?,

More pics from this morning. They are now like blood streaks
He had this a few months ago and took him to a+e and they said it was blood but his levels were 119 and had dropped to 109 if they had dropped to 100 theu would have done blood transfusion. So they said if it gets worse bring him back.
Have emailed his gastric.
Theres something bothering him, hes feeling hot to touch but no temp (hes wearing pj shorts atm) and hes clearing his throat and coughing a lot more. Think a chest infection is brewing.

When are you going away? The delivery company can deliver to where ever you are going if you give them enough notice. Ring and ask them.

Dont have a clue whats going on with neocate but if needs be he csn have neocate active which is similar to advance

They will deliver to my dhs home country pakistan but not to malta?

How long is the flight? If its not long haul (pakistan was 8-9hours) then hopefully will be ok.
Hoe long are you going for? Would be worth ringing airline to see how they can support you when your on the plane?

Hes still passing this stuff. What do you think of it? Hes off in himself too. He'd not passed urine from 12-4.45 ish. So once his feed finished stuck him on a water feed so he has now passed some urine and sone more stool

Hello All. Lovely pictures....

hope everyone is as well as they can be.

My ds had his life changed almost exactly 13 years ago when a hospital Dietitan put him on Peptamen - at that point there was no kids version and it was meant for the over 5s only. No more horrible poo!! (apart from a couple of years ago when a different dietitan tried to change his feed...I think Peptamen costs a lot more than the nutricia stuff). I know when it was as it was just before his fourth birthday and next week he will be 17!!! I am still 21 of course!!

Ahh birthdays!
When we sit and look back im sure most of us think how the hell did we get through it but we do! Theres no option to fail!

Hes still asleep, has had water feed on as usual overnight. He was quite cheery last night. Its eid tomorrow so hes very excited its thr first time hes beeb excited.

what delivery company are you with? I was with fresinus and they were amazing. Now with abbott

wil keep eye on him

how is everyone

He still feels a little off but is ok.
Hes not passed stool yet so cant say anything about that.

I loved fresnius kabi they were amazing.

DGD I am afraid I cannot comment on DGGS's poo, I am afraid I need to touch and smell as well .Am glad he is a little bit better.

Shiney I hope it is only 1 of your DT's has CF, it is a horrible disease, and all the CF's I nursed were amazing and humbling.

Giddy hope Eli is doing OK after the B.P I have seen some remarkable results!

Will get this off before it vanishes like the previous X2 posts!!

Take care all

Currently in a+e as his button just started shooting milk everywhere and dont have a spare plus he has lots of pain so will mention the stool thing here so will mention that.

Just been triaged.
His bp is 87/37 is it me or is that low?

Might have to wait for surgeon's to replace a bloody mini button

Thats one reason why dh lets kids stay up so he can see them happy.

The 87 isnt bothering me its the37 and his pead said keep eye om his bp due to the heart murmur.

I said to the dr before he goes can we check his bp again and he was arsey about it

OH Shiney my heart goes out to you! Three how on earth do you cope with 3 lots of physio!!

Yes all mine have various severe health problems but we chose to have them so 3 have died but we were aware. I am at a loss what to say. As you say have to get up in the morning with a on your face.

DGD I am not sure about DGGS when I was a whipper snapper we did not take childrens' BP I think the rationale was in children BP was not reliable apart from kidney failure! Hope DGGS bounces back soon XX

Thanks granny makes me feel a little better. The only reason why it had me worried was the paed said keep eye om it due to the heart murmur.

Still waiting for bloods

Sorry I've been crap again.
El still in and out of hospital for his pump reprogramming. But taking it in his stride.
He had an anomaly on one of his blood results so it needed repeating bur the Dr was in A&E with a poorly. So had to wait.
He has a swelling on his back where they have threadded the catheter up his spine so he needs to be lying down again.
Everyone has colds here poor Al it has gone to his chest, sounds like a chain smoker who's just ran a marathon lol.
I wouldn't worry too much about the low BP I don't think it really shows much in kids like 2old says.
El didn't have his done post op, so don't think it's really worth it in kids
Hope everyone is well must dash xx

Giddy sorry to hear Eli has had problems with his pump, hopefully things will soon settle down and he will soon get the benefits soon. Take care of your self.

DGD hope LO is OK now, let us know.

Shiney Am shocked that "they" say it cannot take 3 hours to do morning cares. Perhaps they should try it. Do you not get Continuing Health Care for them? Understand your fear Has DD2 got CF really hope not!!

Well my scallywags are on holiday now and so far so good, taking all5 to Sea Life this W/E. On the upside both "girls" had heart appts and no change

Sleep well all you little tinkers.

giddy hope el is better now

Shiney I totally get how it takes that long!
I dont wake that early as I get into bed past midnight/1am once ds has had all of his meds and water feed up etc. Up for around6ish most mornings. Once got to 8am and was chasing my tail all day as id lost 2hours! Rather wake up earlier!

his tube was replaced witha bigger size and hes ok atm. Its still getting quite gunky.
Hes not pass stool today or yesterday. Hes on liquid paraffin and docusate to help as lactulose, movicol, Picosulphate didnt help much.

Still waiting for consulant to get back to me.

Been busy with eid, then ds had resp appointment and so they have changed his long term antibiotics from cefixime to azithroyicin and now co amoxiclav. Hes stll pretty chesty.

He goes for lung function test in September.

Was ds2 birthday on Monday.

Was nice, all 3 had a good day

granny thats good nothings changed, have you gone to the sea life too? Been wanting to takes dc to blue planet aquarium I went as a child and jt was amazing ds1 and ds2 would love it