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

[isitme1]

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

Wtaf is wrong with fone!!

Right wil try again
hes asleep and they are starting to go a lil purple
not as bad as they've been though.

I would mention it to the gp. It's not unusual if you are cold.

The room was cold in the morning when we woke up.
Then we had the heaters on and he had fleece pjs on and by time he had his morning nap he was going the funny colour again.

Meant to say that by time he slept it was warm

I'd want to get it checked out, I know Al'sfeet went blue a few times when he was little, but they do that apparently

Just a quick proud mummy moment, Elliot was asked what his favorite thing about winter was, and he pointed to a snowman. Then his 1:1 put a pencil in his hand and he wrote snowman!! ??????

I remember dr telling mum that when they are newborns they do go funny colour as the heart is doing something new or something like that.

Awwww bless him. Hes coming on so well!!

Ds1 has had back ache again but hea constipated again.

Well done Elliot I always thought you were a clever little boy XX

DGD the hesitate to offer any advice about blue lips. Suggest you pester your GP and do not be fobbed off. Hope you are not feeling too sick aren't I horrible? Poor little lad bunged up bum is horrible.

Scallywags in respite tonight for 5 nights it took nearly 2 hours to pack up all their equipment and now need to take it over to Squirrels and then

Love to all XX

Do they all go to respite? Or just J and A?
Either way a bit of a rest for you!

It's such a viscous circle with the constipation, has the gastro dr said about trying anything else?

Elliot trying to go to sleep on the floor, he's so tired after school, they have finally funded a toilet chair for him, so he can use the loo at school ??
Alex has run me ragged all day, he's so mobile now it's ridiculous, I think I can sum up looking after him like. One of the most precious things in your life constantly trying to harm themselves I know he's only investigating but honestly how many times do you need to pick up the heavy dog bowel full of germs I'm getting a bit obsessed with the detol, I think the dog may have a detol bath tomorrow, as he has become the latest thing which needs kisses!

Giddy just J and A so it gives the others a bit of "quality" time.Best of all we can go to bed and stay there 'til 6.30 rather than 5.30 and no getting up in the night. Have had some .Good luck with the dog. Fully understand where you are coming from with Alex but ....well. Hope toileting goes well at school.Would be interested to know.

Kisses to all plus dog and oldsneeze

Thats helpful he has a loo to go to at school

ds1 wasn't too bad when he was beginning to crawl and walk.
lil brois1 tomorrow! ! Hes a pain in the arse and wont sit. He always on the go!

Giddy the gastro is an idiot. He keeps saying its nothing.

I dont believe that being constipated all the time ia nothing

could do with some advice.
Little niece hasnt been responding to her name so I told her mum that something is wrong. It was her assessment yesterday and they tested her ears and shes fully deaf in 1 and they are not sure about the other. Shes 10months old. What's the best we can do for her?

They've said they will send her mum to sign language classes but shes dyslexic herself.

Granny the sickness is horrible! !

Granny enjoy the 'rest'
x

On a gastrostomy issue (wots that!). El has a dietician appt at the end of the month and we are hoping to get rid of the night feed, and switch the lunch time formula for a home made blend. Obviously we have to up the calories in the day meals as last time we dropped the night feed he lost a kg. I'm sure he's put it back on as he weighs a ton!

We will ask dietician to rewrite the water boluses and plan for school and try to tie it into the toileting scheme. Ie big bolus of water and toilet 40 minutes later. Is all a bit confusing but it would be fab if he can be toilet trained.

20ld. Enjoy your rest. More than might be more sensible

Isitme. It's 20ld who will know all about deafness and cochlear implants if they are necessary. I've no idea about hearing problems, but it's a real shock.

DGD have got some experience of deafness but what shocked me if the speech centre in the brain is not used it dies. We were told if Jay had been given a cochlear implant as quickly as possible he may have got some speech so decisions must be made quickly. Sadly for Jay it was too late but bless him he does use "on body" sign language very effectively. We are so proud of him he has 10/11 he uses consistently sorry for mini boast

Could do with Annabel coming off night feed......she has learnt to lever herself up on elbows in her bed and yank on tube/feedstand and sends it crashing to the floor 4 times Tuesday night we were up!!!

Oldsneeze good luck with school there is safe and health you know

Love to you all Sleep well you little TINKERS for your knackered mums

XXX

I dont think she can hear anything :(
Hosp appointment tomorrow. ..
how is everyone

Ds was sick last night and there was coffee ground blood in it. Off to aspirate to see if there's more

how is everyone x

Oh no is he ok?
We had a scare yesterday I had a phone call from school saying that Elliot was having body spasms, a trip to A&E later and he's ok, we think it's to do with his sleep and hi not getting enough, plus he has a cold virus which is probably made him more tired than usual. He does normally have jerks when he wakes up but doesn't usually do it in the day I think his poor 1:1 was a bit freaked out by it.
Alex is being a monkey!

I will have to ring gastro today.
He had slightly fresher blood come out of it last night. He felt sick so I opened his tube to empty his stomach and it was a few blobs of blood. Biggee than streaks.

Off to aspirate so will see if its the same now.

aww poor el. That must have been really scary. Glad hea ok x

Isitme. I hope you had a response from the gastro. It's clear DS has some serious gastritis issues. It's not something I know much about as all my lot have been fine in the reflux department thank goodness.

I am babysitting as DSIL is out and jess can't do both boys. So far tonight el has had two episodes of night terrors and just woke up a bit figety so thomas the tank engine is on and he is getting giddy at all the crashes! Dad is home soon so he can settle him down. Hopefully that will be it for the night but I doubt it. Seeing neuro in feb so the sleeping has got to be sorted out. One night and I am exhausted!

I vented him this morning and it was a sticky almost oily bloody blobs that came out??
There were 2/3 blobs together they were around the size of a nearly 2p coin??
In himself hes fine. He sometimes has tummy pain and other times no?? Wtf is going on? Hes well himself no temp or anything? A+e mighy just dismiss him due to him being so well??

Omg that's scary. His poor little tummy must be red raw to be oozing like that. Maybe they should know about this and maybe a Jj tube would be an idea to let his stomach lining heal? I really know nothing about reflux I'm afraid

Its like orangey redy oily stuff thats coming up??
His consultant is on 'very long leave'
I spoke to gastro on call on Friday and they said ring on Monday for an appointment to see registrar.

Hes still complaining of pain but not all the time.
I can't find anything on google either (to help)

DGD do not know about DGGS and hesitate to give advice. However both mine have had blood in their aspirate and have found if the external disc is too close to the skin it causes the internal disc to rub on the gastric wall. I always make sure there is a centimetre from the skin.But please seek advice.

Giddy sorry to hear about Elibean' s spasms As you know I loathe seizures with a vengeance! Glad you haven't got to wait too long for a Neuro appointment. It is really best to know so loads of good luck vibes.

Not too bad here but battling with wheelchair services. They drive me loopy.

Ive just put water on to 'clear his system' and give his insides a moment to recover.

His external peg is ok. Internal isnt too close ( checked today and did the thing to stop buried bumper )
He is saying it hurts. Will ring gastros again in the morning .
do drs keep the same bleep number or does it change as per shift kinda thing? I have a bleep numberfrom gastro on Friday so could I ring and ask to be put through? ?

Hope they sort you soon with the appropriate wheel chair x

Where I work now they keep their own pager but where I used to work they swap every shift, his tummy must be so sore bless him x

Hope you got your wheelchair sorted, el had his issued 6 months ago, 2 months later he was re referred as he looked squished, we were wedging his 11' bum into a 9' gap

I've been at work today, to get me back into the swing of it ready for April. I'm so used to being at home now I really don't want to go bacl!
No night terrors so far tonight fingers crossed for a good night. X