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

[isitme1]

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

Dr said if its still like that tonight they will do echo tomorrow.

Where do you mean further? I dont mind as long as he gets sorted

they are talking about doing wireless videoscopes which will go tthrough full digestive system. Which sounds better than a normal scope.

Shiney. Thats ok to do fuck all.
All ive done is eat crap all day.

Hi Lafies, sorry I have not checked in in for so long. Work has been the shits latley, but hopefully will trun around soon.

Lost any updates on your DS? I hopee the i,termal scan thingy gets to the bottom of the cause of his pain and the blood in his feces.

Shiney, glad the IVAB for dt1 for a bit and I hope you are getting some rest as you must be completely exaughsted.

TooOld hope you and your gang are all ok.
I have my brain MRIs and spinal tap tomorrow and hope they are able to finally make a diagnosis of MS or not and if it is, start me on some type of treatment plan, tp help slow the progression and/or outbreaks.

Think of you all often and hope everyone's doing as well as expected.

Sweet dreams from across the pond....d

Sorry for the absence again

been absolutely hectic

Ds reports showed his blood had dropped slightly so it was blood he was losing
.but......
we are going on holiday on Monday

will pop back before I go

hope everyone is well.

and who ever nominated me for thr secret santa thank you [flower] it really made me smile. Really appreciate. Made me cry! Xxxx

lost hope you have a wonderful holiday, you deserve so much needed rest and relaxation.

Glad toy were nominated for the secret Santa, you deserve something special.

Shiney that's great that DT1 made ut 2 full days at school. Any positive is great news for you. I hope you are able to sneak a nap during school hours or at least a cuppa without interruption.

The MRIs took aver 2 hours to 2 do on Thursday. They tried the spinal tap, but with the back surgeries and all the injections have caused so much scar tissue, they couldn't get enough fluid. They wanted to move up to my neck, but I was in so much pain, I was crying from the pain as the lidocaine only works for so longdecided to just cancel and see what the MRIs show.

TooOld hope you and your crew are all doing well.

Good night ladies from across the pond....d

**dang phone, glad you were nominated.

I even proof read it, but didnt catch the typo until it went poof!

Wonderful new about DT1. Baby steps, but movement in the positive you must be so happy. Glad tou were nominated as well Shiney. All of you deserve a secret santa!

I hope to get the results sometime this week. Back to work tomorrow and dreading it, but someone has to do it.

Lost have a wonderful holiday and tell us all about it when you return. Until then... Good night too all.

TooOld hope you and your crew are all doing alright.

Sweet dreams....d

Hiii all.
Just thought id pop on to see how everyone is

the boys are absolutely loving it!

We are staying at dhs parents house in a quite little village with a massive court yard! (Enough space for 2/3houses thats how big it is!) Was going to extend our holiday but dont have enough feed tl do so.

The one thing I miss is running hot water. Have one of them wood burner things for the water or a geezer thing that doesnt work that well.

Ttfn ??

Helllooo hope everyone is well. Got back last week.

Got good news

on the online portal thingy for council housing we were initially on app valid for bidding and now we are on initial property allocated will see how long it takes for them to contact us. Will give them a ring lol.

Hi everyone-
My DS (4months) is getting a gastostromy beginning of feb and I'm a bit nervous.
He can take food orally but due to his condition he needs one as a backup for when he won't eat- has to eat every 3hourly, and is a poor feeder for his age- again part of his condition.
I know it will improve all of our lives, no night feeds, no force feeding, takes the pressure of weaning and means eating doesn't have to be so forced and stressful, but I'm so nervous for the op and for the maintinence- I researched a bit on the gosh website and was a bit overwhelmed by all the things you have to do to keep it safe.
Also he is immune suppressed so a bit of a fear of the healing of the wound as the will be slower for him. Just need a bit of a hand hold really.

Hi everyone and welcome MilkAndFenty
Sorry for my long absence but sometimes the LO's just take over life completely!!

DGD how are things? Hope you had a good holiday I bet that is now in the distant past How are the DGGS's keeping you busy I bet!

Shiney I hope Christmas was better this year, mind you I still have a tear 12 years on.

MilkAndFenty your attitude is so right. It will help your LO so much and no more stressing for you. It is one of the better things I have been able to do for my two. BTW DD has immune problems and she has 2 infusions/week of Gammaglobulin which has helped.

Happy New Year to you all

Thankyou for your responses!
Really nice to hear those things from you both.
I know it will be better in the long term but still quite daunting to a newbie.
Is there any chance that what he does take orally could become less with the peg? How do you all deal with oral foods if your DC take them? Do you worry about what they are eating or is the opposite because you know they will definatly get their nutrition via the tube?

That makes sense.
I know my DS1 who has no problems sometimes just doesn't feel like eating, as do I sometimes. I just worry about it so much more with DS2 as its so important.

Agree with what Shiney says, but speaking as a very old paediatric nurse (hence my name) is there any reason why you can't offer him a bottle and put the rest down the tube? No pressure on either of you. But please check with your team.

OK Shiney I don't mind it busy but sometimes boring would be good!

Right who is going to start a new thread....?

XXX

2old
Yes that is the plan :) I'm just hoping what he does take orally doesn't dwindle.