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

[isitme1]

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

Thats just the beginning (pics) . If I wouldn't have cleaned it would have got worse. Will carry on leaking on ti his vest now

Hi DGD DD's PEG is always mucky smelly and often sore, My feelings are it is due to leakage of gastric acid which is very strong. I put Vaseline around the stoma to protect the skin and a Buddy Button to protect clothes! Just another thought I have Maxitrol from the GP which is a topical A/B if desperate.

TBH I am so scared of the overuse of A/B's. I only want them if kids are really poorly as drugs lose their potency. There are of course exceptions C/F and medical implants.

Shiney does your LO have a PICC/Hickman line for his drugs? Poor little chap.

Hope all are coping with the holidays mine like yours loathe to be out of their routines,

DGD do you need a Granny to come to Pakistan with you
XXX

Just popping in for 5 seconds to say to 2old. You need to change your password. I've just seen your name and password on a Twitter site related to the mn hacking thing xx

Thanks Giddypants Have never been on Twitter????? Hope you are all OK

Shiney hope hes ok!

Granny hope your account is safe!
Ive had a horrible time trying to log on so just changed password now

shiney are you home yet?

Giddy hows everyone?

Everyone else? Are you all (inc dc) ok?

We are going on holiday in October what do I need?

oh and the calproctectin test shows inflammation. like ive been going on about all along!
dr thinks its due to c.diff even though recent stool shows hes clear of it
Have to drop more stool off then start 2months course of antibiotics!

Darla hope your ok. My ct scan was normal
hope you get the all clear too x x x

Ds has also lost weight, had to increase feeds again

Shineyshoes in my humble opinion I thought schools were supposed to be child orientated surely they have a soft area!! Hope the ABs and AVs give him some protection. Good luck with the Birthday Parties!!

DGD DD's Calprotectin was 800+ and is now on nightly enemas....purple stains in pad Sadly her immune system has plummeted so more infusions but good to get it under way before winter. hope LO's are ok and you are looking forward to your holiday.

Hope you are all coping and are not too exhausted after holidays.

Shiney you dont sound selfish at all. To look after everyone else YOU need to be ok too and a bit of 'me time' is essential but how we are supposed to get it is ??

for me my me time is when dc have gone to bed and im cleaning
but now ds1 is at school and ds2 started nursery I get 3 hours a day where its just me and baby so can get most cleaning done then

hope the antibiotics kick in as soon as poss and keep him protected

granny he didnt tell me what the value was but he just said the stool result showed he has Inflammation which is going to be from the c.diff. I have sent 3x stools at gp for it to be tested for c.diff and all3 clear so ita not that. We cant start antibiotics until stool sample sent off. So Monday willnbe 3hour round trip to send shit off

Granny I hope thr infusions work quickly and keep her healthy in time for winter which im bloody dreading! 3x with asthma isnt going to be a nice time.

hes having gastric problems but scopes show 'inflammation at entrance of colon' in nov and in march 'nodules in colon' which could be the start of where the wbc are which has something to do with ibd. Cant remember what exactly. But the consulant sees these results as normal where as thr other consulants say its something but cant say how significant.

for everyone x x x

I get a few mins here and there to check mn lol. Once everyone is in bed and tvs off, lights off too I have some me time but cant do much apart from browse the net which is enough to keep me sane lol

The consulant is really nice but rather over stretched. He works private mon-wed a d thurs fri are in the hospital so he has a full weeks worth to do plus ward rounds, theatre etc before appointments.

The calproctectin test can't be dropped off at gp the labs they use cant do it.

We asked ds to poo on Thursday so we didnt have to go back. He didn't. Hes only just passed stool this evening lol. Good thing we didnt wait!

dh does help when hes not working. Well more than he used to! No matter how much work is done theres always tonnes more to do!

I can't ask anyone to do anything really wrt to dc. My sil will havr middle one for hour or so if I have to go ds1 appts but apart from that nothing.

Absolutely knackered. Boys up 6am and we went to sleep after 1am!

x

Presents for tomorrow? Whos birthday is it tomorrow?

No respite here.

some bastard has just keyed my car
stupid little bastards going round on bikes touching things they cant afford! Wtf. Stupid little bastards.

Rant over.

Dh leaves work this month as the base is moving and ita not worth going all that way paying for fuel for less wage.

Really pissed me off.
If you cant afford it then dont touch it!
Its not a big fancy car but still my little run around. I remember the days when I didnt have a car and had to take ds to ooh who sent him to hospital. Had to make the journey there myself. In heavy winter rain. With no coat as I put it over ds pram to protect him. Didnt have enough for taxi so had to get bus there. Was horrible.

You need to watch a good comedy. Will help you loads. I used to try and watch some every night to help me unwind but now funny pics do it for me too. It will definitely help you feel better.

Its ds on Thursday. Not bought him anything yet as dh likes it all last minute I love to be organised but he thinks we might be able to get something better the day or so before.

Feel free to let off any steam here.

Here...

The worst bit was I was living at home with parents (2cars, 3 drivers) and getting a lift was almost impossible. No one cared enough to do so.
That was before dh came over. We had visa issues for 2andhalf yrs as I was 17 when I got married. Hes from pakistan andhad to be 21 to apply then it changed to 18 for a year which is when I was getting his case together but due to ds being so ill I couldnt work.
Had to get everything together before the law changed to £18,000+ for income for the person who was applying as sponsor! Where on earth are they supposed to get that these days?

shiney. Be easy to yourself. Take each day at it comes. You dont have to be super woman for anyone you just try your best like you always have done. Hats off to you. Just like all the others on here you and everyone else are truly inspirational.

Happy birthday DTs x x x x x hope they enjoy their day and hope you get through the day lol. Birthdays are hard work!

Hope the day went well .

Consulant switched ds omperezole to ranitidine but his reflux is worse. Same thing happened when he was a baby too. Wwyd? Had to slow his feed right down and hes actively refluxing a lot more. He is saying its cominf up and down more fast now?