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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


Isitme1 Mon 17-Jun-13 20:32:08

Awww bless. Its nice when they start ro say something that means so much.

Im 35+weeks. Im getting pain but dh wont let me get up to help it all along lol.
Still leaking tiny bits.

Lil bro is the same. He will suck for ages and mum is convinced that she's being sucked dry lol.

Granny how are you coping

Id be devastated if it was nothing lol. Very excited

Isitme1 Wed 19-Jun-13 08:45:34

Got checked yesterday and they said its most likely not my waters but its not thrush. There was some liquid there and they've taken a sample and will get results in 48 hours. If it is they will ring me and start doing blood tests and keep me in. If its not ive got to wait lol.

They've changed antibiotics to a different one now as the ones i waa one weren't suitable in the last month of pregnancy due to danger to the baby.

How is everyone x

sneezecakesmum Wed 19-Jun-13 19:26:26

We are all OK. Enjoying the sun. I hope all the tests turn out normal, must be so worrying. Little alexeipoo had his 12 week jabs today and is currently crying inconsolably. J giving him some calpol, so I hope he settles. I remember her as a baby doing exactly the same thing! Think 20ld must be in Nottingham now with DS for his SDR. Very nerve wracking but I think its the best thing. smile

2old2beamum Fri 21-Jun-13 22:28:47

Hi all
Just a short scribe, have come back from Nottingham and already amazed at the difference with tone in Jay's lower limbs. The care both medical and nursing excelled my wildest dreams. Jay had a few problems seizures and some urinary retention which I expected but managed to sit in wheelchair for nearly 6 hours smilesmile
DGD am now nervously waiting, hope you are all OK.
Hope oldsneeze and giddy are ok

Am absolutely knackered but unable to go to bed 'til Ben, Ellen and Lottie return from Hawaiin Ball

Sleep well you little scallywags XX

sneezecakesmum Fri 21-Jun-13 23:15:31

Hope all you LOs have returned and are giddily being tucked up in bed!

So overjoyed for you that all went well for Jay in Nottingham. It is just fantastic what SDR can do. Hope he is having good pain management, but to be sitting and doing so well is wonderful. Bless him, it will make his life so much more comfortable in future and the long term outlook is excellent. May save you back a bit too grin

Alexei boo boo (apologies) has a cracking cough but is still mostly happy. Elbear has a milder one, also a happy boy. 3 really good night sleeps, maybe cranio sacral therapy is not wacky at all (fingers x) ! Will no doubt get an anxious call from giddy some time lol.

Night all xxxx

2old2beamum Sat 22-Jun-13 22:46:20

Thanks oldsneeze hope Elbear and Alex are not any worse and am glad cranio sacral therapy seems to be working.
Am settling back in home routine Lottie's birthday (yesterday but postponed 'til today bless her!)
Jay has had a brilliant day and at present still awake laughing his goolies off and 2old is knackered but happy smile

Sleep well scallywags XXXX

Isitme1 Sun 23-Jun-13 15:51:00

Glad it all went well granny

Hope the boys are better

Been up since 3am with pain but nothing I cant handle (only just)x

sneezecakesmum Sun 23-Jun-13 21:04:25 deserve a big wine what a relief its mostly over. Is Jay home soon, or have they let him off for good behaviour grin

Isitme. Be like giddy and say NEVER AGAIN! Bloody pregnancy is awful.

And actual nod to the gastrostomy bit of our thread!!!....El has an appointment in July to see the gastro. We are pushing for a mini button (have facebook researched it!) before school in september. Pretty sure its just a quick whiff of gas and in it goes, but (yuk) yet another thing to fret over. We also have an appt wednesday with the dietician and nurse (a whole hour shock ) to see about school and BD, but not holding much hope out there, but heyhoe, here we go again.

Isitme1 Tue 25-Jun-13 10:53:27

Lol sneeze ive actually said I want another in about 4 years lol.
Its just the last bit of the pregnancy that gets to you.
All these aches and pains. Whats getting to me is not knowing how im going to be like this time round and that scares me.
Have an appointment next week with consultant and ive sqid I wont move until they agree on a sweep or induction. Ideally id like a sweep tp see if it sets me off and if that doesn't work Induction.

Gastrostomy side of thread:
Ds has been complaining his tummy hurts and holds his peg? Have no idea why.

Hope the appointment goes smoothly, we see dietician tomorrow and shes going to say decrease feeds to get him to eat. Im not convinced its the right time to do so.

How's giddy amd the boys?
Granny how are you settling in? Hows jay doing x

Isitme1 Fri 28-Jun-13 10:07:00

Anybody out there?

sneezecakesmum Fri 28-Jun-13 19:32:49

Giddy and the boy are ok. Bit of an anxiety issue going on. Probably a bit of PND but its only to be expected, things going so fast with the elbear, school looming, new button looming, thinking about potty training in the summer hols....and on and on! She has had a chat with the HV and feels better just for talking to her smile

Think if the know that big yellow thing that appeared in the sky years ago....would shine it would cheer us all up!

Don't let them force you into doing anything that doesn't feel right. Now may not be the best time with a new baby looming. It's always a bit of an upheaval.

Buddy buttons going so slowly as I need to help jess sort the bedrooms out ready for the boys to go into their own rooms. Always hopeful!!! I bought cheap poppers for the buttons and they are sharp now will have to traipse into town sometime to get metal ones. Cost more in parking than poppers confused


2old2beamum Fri 28-Jun-13 22:06:12

No I am not dead yet grin
Oldsneeze sorry Jess is feeling low Not really surprising considering what she has on her plate, just glad she has you-----wish I did!!
As you said a bit of sun would definitely lift my spirits was so cold Tuesday I nearly put heating on!!

DGD not long now I am getting quite excited, Hope DGGS is ok and his poor old tum is a bit better.

Things getting back to normal here Jay is so much easier to manage with floppy hips. He has feed changed and he is now crapping for England. He is still retching and we are giving him Odanstsetron and gastrostomy is on free drainage so we will see!!
Annabel is still shitty with me for abandoning her so lots of cuddles this weekend.

Hope you all sleep well including all scallywags.

sneezecakesmum Sat 29-Jun-13 22:10:16

Today I have finally planted my perennials. Cut the grass and trimmed the edges. Watered 1000 pots and plants. (Why did I plant so many?) cleaned the bathroom after the plumber installed a new flush smile (little things please me). Cooked and froze 10 blended meals for elbear. Chatted on Facebook (of course). Shopped for food and bird seed...I do not have garden birds, I have gannets. Cleaned the decking of bird poo...and the tables and chairs! I have seen 15 types of bird at my feeders! Cleaned my car and helped jess choose a mattress for el! Also did my washing. Back and head aches.

Bad 20ld for not being in two places at once grin. Hope annabel enjoys the cuddles, and brilliant fab re jays legs. Our friend (also had SDR) said she struggled to get nappies on when her boy was a toddler.

Saw a post from someone on fb whose gastro surgeon recommended BD for Jj tube. Think it would need lots of blending as it bypasses the stomach. I suppose the retching is following surgery?

Jess feels happier now that she talked to the HV about her anxieties.

sneezecakesmum Sat 29-Jun-13 22:10:30


2old2beamum Sun 30-Jun-13 16:27:53

Thanks oldsneeze for your words of wisdom.
Am struggling at present Jay is retching for England, Scotland and the rest of the EU has done so for past 48 hrs. Will need to contact someone tomorrow. Pointless doing it now as he is not able to puke so is not dehydrated and peeing well so not life threatening but very distressing.

Sorry for moan sad am usually upbeat.

Hope all you others are ok
Off to water demanding minute garden but like oldsneeze too many pots my fault.

sneezecakesmum Sun 30-Jun-13 19:30:56

Poor jay. Maybe his tummy is hypersensitive to anaesthetics or maybe just a bug? Ondansetron usually does the trick, retching is awful. A friend of jess's little one had a finds and Bart vomit. His mum said it was so distressing when he was poorly and retching. Moan away, its good for the soul.

Isitme1 Mon 01-Jul-13 20:02:21

Wow sneeze you've been busy!!
Nesting are we? Lol

To giddy,
Your doing an amazing job with the boys and dont beat yourself up about the little things. X when I had pnd I did online counselling on the horses mouth (Google it)
I cant talk about how I feel I cqn write it down or a bit of art makes me feel better.

Granny hopefully its just a bug and I hope he gets over it soon. Its horrible when they're ill.

Ds has been very picky with food again.

Had some news today. I went to consultant appointment with thinking im not leaving until they give me induction date but my hb llevels are too low and have to go in tomorrow for infusion and then again next week. They dont want me to have baby until levels rise after next week. So got to wait.

2old2beamum Mon 01-Jul-13 21:46:24

No poor old Jay has not been any where to catch a bug he has been at home for last 10 days and we are all fine. Paed like me feels it is something mechanical. Am really wondering if it could be behavioural which sends me into a neurotic spin.

Sorry DGD you are having a tough time with this pregnancy can only offer you support and love XX Tell DGGS to stop worrying his poor mum and poor old GGM me grin
XX to all

My birthday today nearly in tears as Ben, Ellen and Lottie raised their glasses of "champagne" to the best mum in the world their words not mine. They restore my faith in humanity.

My love to all

Isitme1 Tue 02-Jul-13 14:20:41

happy birthday granny
Hope you have a wonderful day!!

Just had 1st infusion
Not too bad x

sneezecakesmum Wed 03-Jul-13 22:25:12

Many belated happy birthday wishes 20ld I hope you had a lovely day. Jess and I have been banned from MN for a few days for breaking talk guidelines which we hadn't read shock. We've been on the naughty step for a few days so missed your news smile flowers to you xxx

Isitme. Blood transfusion, awful sad. Bet you're fed up with it all. I would be. Off to bed

Isitme1 Thu 04-Jul-13 09:07:14

Ohh you've been naughty lol. Didn't know they did that.

It wasn't blood (wish it was as this was vile) it was ferinject iron infusion. They didn't say it will make you feel shit and out of breath and out of energy but it does.
Had to go a+e after having it as I couldn't breath properly. Got to have more on Tuesday! !!

Ds hay fever settled for a bit but now back. He looks all teary eyed and snotty nosed but its not a cold.
He hurt his tummy and peg site playing with daddy.

sneezecakesmum Thu 04-Jul-13 19:42:38

Think I would prefer that than blood, you never know where it's been lol grin

Elibear is puking for England again. Fell asleep when the physio was there so maybe he was poorly after all. Bright and perky after his nap though, but hadn't wee d since this morning, so water is going through the pump. Had a lovely morning in school though smile

2old2beamum Thu 04-Jul-13 21:43:17

Quick catch up.
Unlike Elibear Jay is not puking for England but crapping for Europe. All professionals are convinced it is his new feed so back on original feed until Wednesday and then we start on a another pre-digested feed. I think the new feed has had the desired effect he is losing weight grin

Who is Annabel oh yes DD4 she is being so good I am sure she has now forgiven me for deserting her smile

DGD Stefen had frequent iron infusions and they did help him.Hopefully you will soon reap the benefits. Love to DGGS

Sleep well my friends

teresa84 Sat 06-Jul-13 21:25:49

Hi is it normal for a peg tube child to always vomit? My son is 3 years old and has been peg fed since he was 3 months old. He always vomits his feeds up we have tried medication but it didn't make any difference. The only thing I can think of trying now is to fed him 24/7 but dieticians don't want me to do this. Any advice please? Thanks

2old2beamum Sat 06-Jul-13 22:09:08

Welcome tersdal DS always puked and a jejunal tube was inserted which was successful for 3 years but now the little ratbag is managing to return stomach contents in the last 3 weeks. DS has CP and myriad of other problems.
If your son has CP gut motility is often a problem.
Hope you other scallywags are OK

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