Gastrostomy support thread no.2! Tubefed children support thread

[Isitme1]

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

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Hi DGGD sorry you are having a rough time (again) story of our lives Our DC's were sent to confuse even the cleverest Sad you are having problems in hospital I am lucky having worked at our hospital and am very old and crabby. Hope you are looking after yourself, how many weeks are you now?

Oldsneeze and Old Fart congratulations on your latest DGS ENJOY
Love to Jess and I suggest the name Stig
BTW the buttonbuddies are fantastic Annabel's site is clean for once yay

Off to sort out fitting DS's. DGC coming tomorrow no problem as they are so good. Still worriting about SDR

Sleep well you little tinkers!!

Sorry you are having a tough time in hospital isitme. Don't let them send you home until little DS is unbunged.

New babe is named Alexander Joseph after deciding Oliver was too common .....as in every other child is called Oliver. Oli and Eli would be cute but Ali and Eli it is too. . She told her SIL it was going to be Merlin!

Dd can't believe the difference between this experience and DGS. Babe feeds and sleeps! That's it!! She said babe had apgar score of 9 at 1 minute and DGSs apgar score was 1 at 1 minute

Yay for the buddy buttons. I wash them and soak in Milton then rinse again. Just me being a bit anal but they are under his little lycra vest so dont get much air round them during the day. It's. a big decision re the SDR and I don't envy you the decision but a little boy we know has had a massive reduction in spasticity. Before he was on baclofen and regular Botox but still so stiff. Would go for it but scary. Seems very safe though. Has DS tried the ketogenic if diet for fits?

Couple of baby pics on my profile

I have loaded some pictures too x

Well you silly old trouts explain to this silly old trout how to find pictures.
Love the name Alexander (Alex please not Ali) [busmile]
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Lol we call him Alex god help anyone who calls him Ali

To look at photos click on the persons name and the profile page shoul come up click on photos job done

Both boys in bed asleep, but Alex has been a boobie monster today, feeding every hour and half, so I think he'll be up before long x

Mum you haven't made your profile visible!

Duh! Tried to but not sure on ipad if I've done it!

Can I PM you I actually can do this. Sorry I am an old fart but am old [bugrin]

GOT IT Jess is beautiful and her LO's XXXX Yummy.
Are you still working.
Thankyou

Hi 20ld. No I'm retired thank heavens. More time now to devote to DGS and his development. Was hideous before working 3 days and helping El 4 days for 3 years! Nearly killed me . Hope DS s fits are a bit under control. Is there nothing that could be done. Is deep brain stimulation a possibility. They are looking into it for DGS type of CP (not him though) Dire but ?

Looks like I managed to make myself visible.

Doing some spring cleaning. Ordered big kick ass food processor to help with making blends. Like spending money even though I've not got as much, but heyho [bugrin]. Sun is shining but still freezing. 24 degrees this time last year!

Thanks oldsneeze You are a brilliant Grandmother, my eldest DC is very selfsufficient and does not need help from his aged parents but our 2 GC's are brilliant and are so good with our "funny 5" their parents are doing things OK.

RE seizures Ben now 32 was considered for a vagal nerve stimulater but PCT were not keen, his epilepsy did not manifest until he was 17 and must admit I have not thought of a ketogenic diet will look in to it.
DS (youngest) is jej fed so am wary of changing diet, he as under 900 calories/day and I hate to say has become a bit "lardy"
Sorry for self centred post

How are you and your lovely family.
BTW I am sure you took early retirement
Am a bit concerned about DGD she has been a bit quiet lately hope she is ok
XX to all

Aww jess looka really good to say shes just had a baby! Sneeze the dgc are beautiful. Congratulations once again.

Sorry not had a proper chance to catch up will do soon.

Ds is out of hospital after 5 days. 2 lots of klean prep did nothing and his consultant wasnt there so they gave me option of going home or staying til he comes. I chose home and if hes still not passed in a week then go back.

Hes passed lots of over flow and 2 semi solid stools so there should be more solid stool to come the bit thats blocking him.
Hes lost close to a kg in a week.

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hehe. No early retirement here, the buggers made me work to the last day and I had to as I had a teenytiny pension! Look fit cos Jess just photoshops me lol [bugrin]

I am also getting seriously lardy but have not willpower to diet. only last out an hour a day or so

Ketogenic diet is the atkins diet tbh so might be worth a look. Fits are the pits. and if the PCT wont fund write to your MP. Your babies should have the best treatment available.

Glad to see you again isitme though not nice at all for little DS to have to go through all this with his bowels again. Tell them to get it sorted, its no wonder he has issues around food etc Klean prep has felled adults so poor little DS must have a major problem there.

Have had a lovely peaceful weekend spring cleaning [bublush] Famille giddy have been bonding (and left me in peace!)

Aww. How are they both doing??

Still not managed to update myself lol.

My thinking is that (and the gastrics) lots of overflow has come out some with evenmucus I but hes onlt had 2 slight semi solid nappies and no hard plug as of yet so my understanding is that the plug is still there and hes losing overflow. This morning he was straining and it was overflow plus mucus that came out nothing solid. Plus of the hard pkug jad become soft inside then each time he has his laxatives he should shit himself. Which isnt the case.
The overflow was that bad that it filled his legs and feet straight after a bloody bath!!!
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Poor little boy . Think you are right and he's not really cleared out. Make sure he is getting lots of fluids but its so difficult for you.

Family giddy seem to be ok and getting into a routine of sorts. If that's possible with a new baby

Awww bless. Are they home now?

Mums new one nearly 3months has bronchiolitis so was in hosp with him lastnnight
Ds still doing overflows. Would be useful if they would of scanned him again but noo they dont think of that.

Hes lost close to a kg in the past week. The heaviest hes ever been is 12.9 and last time he was weighed before going to hosp he was 12 and then 11.5 and they were supposed to weigh again before coming out as he'd seemed to jave lost more.

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Yes they are home now. Born Tuesday home Wednesday evening! Bit fraught the first night DGS getting so upset because of the upheaval, extreme tiredness, and missed mummy . We think he's a bit more accepting but because of him not speaking its hard to tell how he really feels.

It doesn't sound good for your DS to be losing weight like this. I don't think he is properly cleared out, but so difficult as suppositories and enemas are far too traumatic for littluns.

They said enemas was an option but his registrar wasnt in and no one would believe us. His tummy seems hard at the bottom and he looks bloated hes passing plenty of overflow and is having wet nappies. Ive increased feeds by 10mls each feed and put water on at night to encourage the hard stool to come out.

Hes still a little fighter. He complains one minute and for the next 20 mins hes up dancing amd running. He keeps confusing the drs with his personality. They keep sayong hes not ill. If they saw him on a good day they would know!

Sounds like they are settling in well. Nice to hear. Aww poor El. Its confusing for a child to be an only child and then have someone else in the family.

Hope everyone else is ok
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anyone about? dh tried changing dd mini button wont go back in, the nearist hospital in 45 mins away, any one else had trouble with them?

A bit of lubricant?

Or ring ambulance. They will get you there faster x

we do use lubricant just would not go:( ended up taking her to sheffield childrens as our local would not do it they had to use mettle rods to get it back in, she fine now just sore. if we call for an ambulance will only take us to local one so would not have got anywhere !

Sheffield childrens is brilliant. Dr thomson there did my ds gastrostomy and saved his life!
We go over 2 hours to go there. Will we did x
Glad she's sorted x

thanks we go there dd is under quiet a few docs there yes they are great and saved our dd life too but it was mr marvin who did dd gastric tube :)

trace2 just a short post but when DS had a mini we always kept a spare mini- button in the fridge it was less floppy and with lubricant it slipped in easily. Also always kept a naso-gastric tube that we could slip in to stop the hole sealing off completely if else failed an old trick (old paediatric nurse here ) Hope your DD is ok now.
You other scallwagsy will post more tomorrow,
Oldsneeze spring cleaning I have 8 bloody bedrooms