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Gastrostomy support thread no.2! Tubefed children support thread

(973 Posts)
Isitme1 Sun 25-Nov-12 14:44:35

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

X

2old2beamum Russia Sun 14-Apr-13 18:53:08

DGD agree with Giddypants but sorry to be crude is the pain up your rectum blush. Silly me I know it is your little brother SORRY hope he is a little better.

Giddy guessed what you were doing due to time of post at least it is positive So glad things are going well.
Many thanks on you and oldsneezes comments about our beautiful boy Stefen it is lovely to use his name smile
Re names none of our adopted DC's were chosen by us except Ellen whose birth name replicated one of our homegrowns. We feel the one thing their birth parents give them is their name (apart from crap chromosomes) and we hadn't the right to change them

Bigbluebus I am terrified re adult services and we have 5+ yrs to go!!
A small group of us have got together regarding children with complex needs and adult services I feel the transfer should be seamless Some hope at present sad

Sleep well scallywags XX

bigbluebus Sun 14-Apr-13 19:13:47

2old One of the positives in DDs transition in to Adult Services, is that we now have more respite than we have ever had. In fact, I hardly saw DD in the Easter holidays! That said, we didn't get very much respite in children's services, so I suppose it is all relative!

The difficulty is in finding suitable places for your young person to go to. We are lucky in that there is a FE college for young people with PMLD and Complex needs about the same distance away as DDs school and they also run 'day opportunities' which is where she has been going in the school holidays. We also happened across a respite centre for young adults with complex health needs which only opened 18 months ago and although it is out of county, we have managed to get funding for overnight respite. Neither of these are run by the public sector, so the service they provide is fantastic!

We also managed to secure Continuing Healthcare funding which I think has helped greatly, as the LA are tightening the purse strings by the minute on the Adult Social Care budget.

The difficulty has been with the Community Health services, which don't operate the same in Adult services as the do in Paeds. So finding people who are trained to do certain procedures and getting hold of some supplies and equipment is frustrating to say the least.

2old2beamum Russia Sun 14-Apr-13 19:48:20

bigblue
Fortunately we like you have secured continuing health care funding, I felt Annabel rode on Jay's back for this but has now decided she wants it on her terms and is suceeding.

I get a brilliant respite package 5 nights/28 nights each for them together and we are again lucky to have a couple of places that do respite care for complex health needs

Jay has reached transition and it is felt that SENSE would probably would be the best to meet his needs.
Your last paragraph worries me
It is all so depressing

Good luck x

gallivantsaregood Sun 14-Apr-13 22:13:26

Hi all, just checkingng in to say we are still alive.

Welcome to the world Giddybabe :-D.

Haven't read much more yet so will post once I've caught up. Been hectic but fab here. Little DS has settled right in and is just so lovely. We all just love him to bits. Bigger DS is doing great and gas taken so welk yo becoming a big brother. Very proud of him .

Hope everyone us well ( will find out in a minute when I have a read) xxxx

Isitme1 Mon 15-Apr-13 16:13:49

Quick question. .
Ds has had horrible thick green mucus in his poo.
Im sure its either ibs or inflammatory bowel disease. Dont know if they are similar but hes had a bit of tummy ache and his bum hurts.
Any suggestions?
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gallivantsaregood Mon 15-Apr-13 20:48:12

Metanium for his bum, photos of the poo to show docs or put in a stool sample. Any idea what could be trigger? xx

2old2beamum Russia Mon 15-Apr-13 21:40:41

Totally agree with Galli take photographs. When I reported Annabel was pooing through her vagina I was not believed so I took photos result

So glad you are OK galli and your LO is doing well (never doubted he wouldn't) smile

Oldsneeze your remark about stiffy blush you evil "lady"
Try to sleep well you lot if scallywags allow grin

Isitme1 Tue 16-Apr-13 08:44:22

Thanks gali.
I was out when it happened and chucked the nappy. It was like thick green phlegm and a small amount of green water. It was horrible. He was in pain before passing it too he complained of tummy and bum pain. Hew had bm this morning. It was a bit more normal but that wsnt the 1st time that had happened. He didnt eat anything new ( in fact oral intake was close to nothing yesterday and day before)
X
What did they say about annabel after they found that out? Did they take action?
I used to take picw of everything but didnt get a chance to yesterday. Hes at constipation clinic today so will see what they say.
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sneezecakesmum Netherlands Tue 16-Apr-13 10:53:48

Isitme. Good luck at the clinic today. No idea what the green poo is all about. I think annabel had a colostomy which is still not under complete control to cure the fistula problem. Galli...so glad the little cutie pie is settling in and happy. I knew he would too. smile.

Take care everyone xx

Isitme1 Tue 16-Apr-13 11:51:56

Thanks for that. Hes done it again and he went all pale and purple eyed while doing it. Really did scare me.
I saved the nappy so they could send a sample off and I took pictures.
I have no experience of fitsulas so that sounds like a foreign language to me. (Sorry granny for sounding ignorant)
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Isitme1 Tue 16-Apr-13 20:29:35

The nurse was a total bitch
She said force feed him your his mother. He is still iimpacted from before he was in hospital. When he went to hosp his left side was harder than his right side but right still had hard stool too. It was the exact same thing today. It made me cry!

Taking him to gp tomorrow for xray and ringing his Sheffield gastric team. They need to see him.
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sneezecakesmum Netherlands Tue 16-Apr-13 21:24:38

What can we say? Awful for you all and as for force feeding, we used to do it and it added to the oral aversion of DGS sad

{{{hugs}}}

gallivantsaregood Tue 16-Apr-13 22:08:33

Isitme that's terrible! I wouldn't force feed anyone! Will he tolerate more fluid through his tube? Extra fluid might help Olsen things up ( He does still have his tube? Sorry if I've missed something cod I havent read back all the time I missed.) Surely if ge is impacted though he'll need some medical help to get it sorted. Won't feeding him on top just add to the problem?

Did you ask elsewhere(FB) about high cal recipes? Hope you get to see gastro team ASAP. Xxx

2old2beamum Russia Tue 16-Apr-13 22:41:35

Oh DGD what a mess why don't they listensad
Re Annabel it was a different problem but the photographs were proof that poo was coming out of her fanny and it could become a child protection issue (grovelling up her vagina to clean her at every nappy change) She now has a colostomy.

Why is the stupid bloody nurse saying to force feed him, he has a tube for a reason. I personally think force feeding is verging on child abuse.

BTW a fistula is a hole where it shouldn't be. With Annabel she has a hole between her vaginal wall and rectum

Am in a grump you have been warned. The LO's are in respite for 6 nights and we had booked to go to the Cotswolds for 4 nights Ha bloody ha. Jay decided to go into pain/spasm mode now needing diazepam, midazolam and chloral hydrate to sort him out. He was due to have heart scan today but was so agitated it was abandoned. I am so stressed the Old Fart said we should cancel and for once I agree with him grin Poor old Ben Ellen and Lottie will once again miss out. We must do things with them but I was so looking forward to getting away.
Sorry rant over
Sleep well if possible
XX

2old2beamum Russia Tue 16-Apr-13 22:43:08

SORRY X posted with galli

Isitme1 Wed 17-Apr-13 08:50:46

gastric this is gastrics website

gali he still has his tube. Ive tried to flush him out kinda thing but nothing.
Going to stick him on some more water instead of milk I think.
It just upset me to know that it was still there and hes been soldiering on like its all ok. When he gets pain he does tell me and if you ask him 9/10 its his tummy that hurts. I just dont know what they can do know. Ive emailed gastric nurses at Sheffield. Will give them a ring at 9. And will ring dietitian at 9 too. Im sure she will say go upto hospital. They need to bloody sort him out once and for all.

Thanks granny for explaining sorry you've had a hard time.
Thanks sneeze. How is everyone?
X

Isitme1 Wed 17-Apr-13 17:59:46

His gastric isnt in for a while so got appointment for next time hes in. Spoke to gastric on call at local hospital amd he saif double the picosulphate as he cant tolerate triple dose which is what he was on for 3 days.
Whats difference in ducolax and picolax?
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2old2beamum Russia Wed 17-Apr-13 20:57:17

DGD my memory is a bit crap Dulcolax is Bisodyl and has been around since the year dot, and is slower acting, picolax is this what I think is the same as picosulphate and goes through quite quickly.
I am quite happy to be corrected I am very old you know.

Love to all sleep well I will grin But Jay not right 3/4hr big grey session, glad we stayed at home.

Giddypants Thu 18-Apr-13 01:05:18

2old you're right about the picolax grin
poor jay sad you must have nerves of steel. I can deal with the cp but the fitting would have me rocking in a corner day and nightsad

can I just clarify that we didnt force feed ds as in holding nose to open mouth it was more of a lot of distraction with tv and toys. then a quick action to get food in the side of his mouth while he wasn't looking. he would literally go day to day not eating anything given the option and it was either that or watch him waste away which is what eventually happenedsad sad times

first feed of the night heresmile

Isitme1 Thu 18-Apr-13 10:25:59

Hes on picosulphate and docusate for constipation.
Increased it to 10mls yesterday plus orange juice plus lota of water and pear (dh adamant that pear will work) we got semi solid this morning but still unsure. Will do the same today.

I received letter last week to say I had appointment today. I rushed to get here and id got here for them to ask no questions at the desk and then mw calledme very qquickly. It was for gtt test but didnt say nothing of it in the letter so id had my breakfast lol. The only good that came out of it was having urine checked which showed protein and leukocytes which she said was sign of infection. I already knew that and I knew I had another infection as im in pain but the infection can set of contractions which ive been getting too (mw said)
Got appointment on Monday for kidney scan and to see consultant so results should be back by then.
X
Granny I don't know how you do it. Really do admire you flowers

Giddy how is lo getting on with feeds? Thats what I used to do. Got to the point I was bledning food and syringing it into his mouth after making him laugh. 8/10 he was sick but had to try. One of my favourites was lying him down and tickling him then sticking a spoonful of yoghurt down him lol.
The things us mothers do for our kids x

sneezecakesmum Netherlands Thu 18-Apr-13 11:21:39

I sit corrected. We didn't force feed elbear but spent about 30 minutes coaxing a tiny bowlful of food in often for him to gag on the last mouthful and puke the whole lot up again. So stressful for everyone. Even now he will sometimes look at our food and gag! Lots of trains chugging into the 'tunnel'!

Isitme hope the kidney scan goes ok. Must be very worrying to have all that stuff going on and pg too. Can see it being quite hard as you get nearer term. Not fun at all.

20ld. Second what giddy says about seizures. Utter utter crap sad

gallivantsaregood Thu 18-Apr-13 22:05:47

Isitme: milled flax seed, if he tolerates it should get him moving. Should go down his tube ik you mix if with a thicker liquid line yoghurt ( nit sure if ds can have dairy?). Probiotics are fab too and might be worth giving niet and once he's cleared, as a regular thing. Powders/tablets from health shop much more effective than actimel etc. Xxxxx

Giddypants Fri 19-Apr-13 02:41:02

Hope all goes well with your scan on Monday, you really don't need the added stress on top of everything that is going on!

LO is feeding ok, was quite a natural from the start. Just on number 2 of the night, he normally goes 3 hours between feeds, but I've put him in his Moses basket tonight where he doesn't go as long.

Have just made a school boy error, changed DS 2 nappy before feeding him, the minute he plugged in he did the loudest splatter fart, followed by 2 more. Well that'll learn me! grin

Been out with the girls from work (and rich) for coffee was very much pass the baby, but nice just to socialise with people again

Isitme1 Sun 21-Apr-13 19:12:27

Took ds to a&e yesterday as gastric said if on an increased dose of picosulphate hes not poo'd come down. Sat there 4 hours to be told come on Monday as the main gastrics will be in to makr a decision on what to do as theres very little left to do. Hes got a soft tummy but can feel the hard poo. Yh that makes sense you asshole. Ds is a happy chappy and he was playing boo with him so of course hes going to laugh. He nealry passed out trying to poo amd its old blood plus overflow. That can't be good to still be going on. X

sneezecakesmum Netherlands Sun 21-Apr-13 19:22:09

sad isitme

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