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

[isitme1]

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

Hi all.
Firstly DGD I am absolutely disgusted at your doctor I get the feeling he should move to private practice. Ours is fantastic has said we can have what we want sod the cost!! He cried when I took Jay the first time. Can you not change docs. Hope things get a bit better for you all

Giddy glad Elibean is a bit better Like you I feel so sorry for your friend her DH seems a waste of space She is lucky to have you for support.

All well here the little scumbags are in respite so we are hoping to do grown up things. First a Valentine's Dinner tonight for Ben Ellen and Lottie pink champagne. It is a bit sad but their special friends live 30+ miles away but they sent cards.

Have a good evening.
Xxx

Hey all;

H not too bad, considering. Projectile vomited her feed all over school Tuesday morning because we incautiously got her to stand up. Two good things about this: 1) the school nurse put a rocket under the dietician who has prescribed an alternate feed to try and 2) at least she didn't do it Wednesday or Thursday, because we had Ofsted in!

Itsme: sounds like a truly useless GP - every practice round here has lots and lots of part-timers working there, so it doesn't matter if one is useless you just ask to see someone else. If you really are stuck with one person I'd try to move practice if possible. We don't see our GP very often but she is brill - I can just call her up and sort stuff over the phone.

I've booked poor DD2 into camp for half term. I'm going to be doing very little with H other than putting feed in veeeeeery slowly and not moving her much, so DD2 would be bored rigid at home all week.

Would have loved to have read an Ofsted report on projectile vomiting what would Gove have thought, it certainly wouldn't happen in a fee paying school.
Hope you sort H' s feeds out soon. Good idea for DD 2 at least it will stop you feeling guilty.

What pissed me off was its on his medical records that he has gastric problems so im not making it up.
I had pnd with him and I think he thinks im making it all up as I askef for help then.

Ds2 chest ia really bad. Hes having his blue reliever inhaler daily.
R3d we had to stop ds1s feed altogether as he just wasnt tolerating it so I rang dietitian and she gave me the advice 30mls per hour for the 1st hour if tolerated slowly build up. Its 100mls per kg of weight so minimum ds needed was 1200mls but she was happy with 1000.

granny

We are doing valentines day tomorrow lol as dh has tomorrow off

I'm fed up with this weather now, and sick of the half term holidays too and they haven't even started yet!
Another trip to see the MIL today think I may bring my crochet with me to give me something to do while I'm there.

Your GP sounds like a pile of piss isitme, I'd request to see someone else x
How is everyone?

Ds1 isnt tolerating his feed. Its making him cough and gag. Hes had some diarolyte on this morning will try feed on extra slow this afternoon.

Ds2 is eating wotsits he wont let me bloody move! As soon as I open the door he looks and starts screaming if I leave the door open 9/10 he watches me leave. So wotsits are helping me get cleaned!

Ds1 is still having solid black blood pieces in his poo! There was loads the other day when he poo'd. His mouth hurts too any ideas?

Giddy I was stuck in city centre after hospital appointment for 3 hours in this horrible weather! It was really scary! There was a building that was still being built and it had no windows so when the wind picked up omg it was like it was howling! Dh even turned car off to make sure it wasnt the car!

I needed2 appointments that day and he was the only person available (after waiting over an hour in a freezing waiting room and he was sat in a hot room!)

How is everyone? X

Ah, crochet. Ain't nobody got time for that...

Today, I am making G tube pads. I must admit, at one point I was thinking: "I'm sure I could crochet one of these more easily..." but I've sewed about a dozen now (and counting) so I might as well carry on.

H's digestive system is doing the hokey cokey. We had a "normal" poo the other day. I was highly excited, but we're back to Catastrophic Explosions again.

They like to give us false hope don't they! We get it every so often with elli and his sleeping, he'll have a week or so of sleeping through with just one or two repositions and then he'll have months of not settling and terrors.

I'm loving crocheting it stops my mind from wondering I go to a knit and natter group on Tuesday night just a few me time hours ??

Hi all just to let you know I am still here watching over you like a clucking mother hen!!
Life peaceful here at present J & A in respite so am spending some ??????quality time with B,E, and L. Took them round the coast this afternoon and the girls said it was too cold to get out of the car!!

r3dh3d do you think we could start a thread called "Catastrophic Explosions"

Back to knitting and nattering to myself

Love to you and all your Scallywags XXX

No explosions to report of here from ds1. Ds2 however was shitted upto his head on more than a few occasions!

Ive signed upto a crohns support site for ds1 and put down his history. They have been helpful and most have said 1stly he needs second opinion and 2nd he needs to have more tests and hemmatology work done as his iga levels were low. If I can get ammo for next appointment and suggest demand more things are done then hopefully we will find out the cause of his problems

I remember when he first had his peg in and I did a list of questions to ask dr thomson. 1 was whh does he get pain in his arms and legs he still does.

How is everyone
x

Good idea isitme, before each appointment with El I think about my game plan, I write down (memory isn't what it used to be) what I want to be achieved, and how to go about it.
Never be afraid to ask straight questions, they usually get a straight answer.
Having said that, I am a pushover and need mum there to reinforce my requests.

Al had a poo-splosion this morning all over his Jim jams lol, first I knew was the grunting and the smell, then a load crept up his builders bum over the nappy! El managed a poo on the loo

Thats brill el is using the loo!
I do normally have a list on my phone or I write it down and go through them.
Most of the time the answer is
no its constipation.

He goes between 3-6 days which isnt bad for him.
I once got
oh because he can talk he has gastric problems

Good news about the loo - though it can be a mixed blessing! DD2 considers it her Throne Room and can sit there for an hour or more, singing to herself.

Well, the "emergency order" feed supply has finally turned up, nearly a week later. So let's see what that does to the Catastrophic Explosions - hopefully H won't see it as a challenge. By way of ringing the changes, she Vomited Catastrophically instead last night - I've been having problems with her vitamin supplement, so instead of chucking it in the feed (where it doesn't dissolve properly and I'm not sure she gets more than half of it) I tried dissolving it in water and putting it in as a separate bolus. H did a very good impression of one of those geysers in Yosemite. It doesn't help that when she is sick, she thinks "No!" and so waves her head from side to side throughout...

Many years ago (before we had kids) my parents forgot to buy me a Christmas or Birthday present for ages (didn't help that I didn't really know what I wanted at the time, and as a family we are notoriously slack with that sort of thing). Then we moved into a new flat and suddenly I got all my Christmases and Birthdays at once: they bought us a dishwasher and a tumble dryer and a washing machine - all Miele. Still going brilliantly, though I shudder to think how many washes a week we get through thanks to Helena.

I wish my Dad was still around to thank him. I think I'll go ring my mum...

Aw sorry about your dad
But the image of H shaking her head and puking made me lol (sorry)
Yes we are finding it a bit difficult with the toilet, he says he wants to go on it first thing, no problem put him on, does nothing literally 3 minutes after having a new nappy and all settled again in the living room, he signs again, of course we don't believe him and he wees gggrrrrr.

Isitme, maybe a scheduled colonoscopy with bowel prep could be an idea? I think the only way they can really diagnose crohns/colitis is to have biopsies, maybe push for that? I know it's not the most pleasant of things but if it gets you some answers, and Ds1 on the right medication then maybe worthwhile?

Mum has no internet so is a bit quiet at the mo, but don't worry she's not buried under. The patio!

Well giddy is having an extension done and I am looking at the foundations with heavy suspicion!

Internet is back again (joy) until we knock it off the windowsill again

Isitme you need to change your GP practice. He sounds a right k*head

20ld ........Hi, enjoy your respite and hope you had a lovely valentines day. My OF is under the patio so we didn't celebrate............well I did as its so peaceful

R3dh3d I had to laugh too at H's exorcist vomiting. Glad you are getting to grips with the buddy buttons. I make them organic bamboo fleece on the skin side and fleece on the outer layer with toweling in between. Fiddly but so good for keeping the skin healthy.

Need to sort out my online banking credit card debts so love to all

xxx

lol, DH's dad built them a house once (he is a builder so DH spent his entire childhood living in building sites or moving house) and the foundations needed to be 3 foot deep. DH's middle brother was, fortuitously, exactly 3 foot tall at the time so he spent a couple of weeks walking around the foundations while DH's dad hovered with a cement mixer. Probably looked a mite suspicious to anybody passing.

My button thingies are . I've never put snaps in before, so I'm embarrassingly overexcited about it: if I'd known it was this easy I'd have done it years ago.

With a lot of SN children you find yourself unexpectedly inventive and innovative. Gastro nurse dragging feet so much with the lycra belt to keep the button from pulling I've made a belt from a cheap ladies fat pulling in corset thing. Does the job

I take it you still have a brother in law?

I don't have a sewing machine so cant make anything we only moved to this 'house' last year. My mum had 1but never used it and passed it on to sil

Also I've emailed dietitian about ds pain im arm and mouth?
Any clues?

He was sick 12hours after eating chicken, it came out exactly how he ate it :(

I still have a BIL, yes ha ha. Became a sparky so clearly not overly traumatised by building sites.

Itsme - no clue about pain in arm and mouth.

The new feed seems to be helping with the Catastrophic Explosions - no poo at all since it went in, so we may be going from one extreme to another.

What feed is she on now?
A few feeds have 'less' waste to make poo so they go less often but still should go but less poo iyswim

Not sure about the hurting arm or mouth either??? When is he next gastro appt?
Good about the explosions, not so good about not going, are you giving extra water? I find with el that if he is really well hydrated he goes more regularly.
we don't like venturing down the movicol road ??????
I'm sick of the bugs now, el has had one thing or another since September, he's still snotty and coughy, same with Al , they cough so much they puke or wake themselves up :-(
I meant to ask mum what she meant about the foundations? But she has just left.
Any ideas of what I can get dh for his birthday on Tuesday?