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

X

hello sorry been a bit hectic here lately and not had chance to read.
silly hormones also make me break down at the slightest thing. eas crying at call the midwife last night. im normally emotionally constipated hard as nails!
nursery this morning so I better get the snotty little ratbag his breakfast x

Bless.
Been to mw and I was sure they listened to baby heartbeat after 16 weeks (17+3) but she cba getting up to check me at all. She let student mw do everything which I was ok with but didn't want to bug her too much as she has meeting with pg sis and ss tomorrow.
Have another next week booked with sis so will make sure they do hb check then.

How is ds?
Ive been cheating and giving ds baby jars plus olive oil. Im waiting on getting some peanut butter and other stuff to use. We see gastric on Thursday. Im going to say tbat the only reason ds has put weight on is due to extra calories going down tube as he is having 'juice' which dietician advised to do to help constipation. she said give him cloudy pear juice down the tube
:)
How is everyone else? Hes taken a liking to hersheys milky chocolate and almond bar lol. X

sat in the dentist waiting room. habing a mild panic attack I hate the dentist just taking my mind off the waiting and the going hot and cold feeling sick sensations. why cant they get a move on already over 15 minutes late!!!

Thatw dentists for you. And gps and hospitals. Always late. Never on time.
Dw about it. Not much they can do when your pg :)
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Isitme: think you need to kick your me up the bum! Hope you and DS are ok.

Giddy: how'd it go at the dentist?

Everyone else 'Hello!'

Fantastic news here. Match approved and our LO will be home in the next couple of weeks. Can't wait to meet him. So excited xxx

dentist ok in and out spent more time waiting
great news galli really pleased for you x
on mobile so cant post much x

Ooo thatw great gali!! Bet your looking forward to him coming home x

Glad it went ok giddy.
Gali dh has been great lately. Cooking, cleaning and what not. After the pre eclampsia scare hes trying more :)
X

Galli. that is wonderful news. You will be so busy in a lovely way Giddy will catch up with you in a few weeks time and also be busy in a lovely way nappies crying night waking hehehe. Giddys dentist asked her what she'd been doing...she said eating a lot of pies

isitme. Men are genetically programmed to not see housework, so you are doing good girl to get anything!!

nite all xx

Lol ta.
I have a bit of a confusing question here.
I looked at gastric drs letter and:
Ttg less tga 0.1 although lgA low at 0.6, lgG less than 0.1.

As far as im aware thats to do with coeliac disease?

Ps he had a different gastric appt and it was bollocks. Absolutely crap. They didn't give any advice at all
X
Hope all is well
Lol im starting to look like ive ate all the pies.
X

Hello all, I've missed quite a bit ! An 8th bday, sentence forming, baby matching, baby scans are all the positive things I've just scanned through and read. What lovely news for all of you!

We disappeared done the PICU time hole for a few days.... The coliform infection moved to her throat ( a foul foul smell coming from The mouth of a child who has nothing orally) then seemed to disappear .. But I think it was just gathering strength .. These pesky bacterias. Anyway one ambulance ride, numerous canulas, intubation, flapping consultants, hundreds of coffees,extubation and we are home ! Hooray!

We were given medi honey to use on her site, apparently it's wonderful. I will report back in a few days!

We had the worst 999 experience ever though - they couldn't turn on the O2 Or work the suction machine. My DD was choking and grey. It was awful. I am looking into how to complain so this never happens to anyone else. Previously, we have had great experiences with the ambulance crews, I have always trusted them 100%.

I have no idea what the readings mean itisme1 sorry.

How's everyone doing? I'm so pleased its Friday. DP will be home all weekend to help with the small monster we call DD !

Bloody hell. What a nightmare.

Hmm I dont know who you could complain to. Google might help.
Glad your at home now

I got this of a site
IgA deficiency is present in 2.3% of patients with coeliac disease, and in turn, this condition features a tenfold increased risk of coeliac disease. Other features of this condition are an increased risk of infections and autoimmune disease.[12]

?? Worth shouting about or not x

Sorry I have not written, absolutely barmy week.
Thankgoodness it is half term next week and NO appointments!!

Delighted to hear your news galli bet you can't wait. I am so excited for you.

giddy hope you are behaving yourself and your snotty little ratbag is improving. DD needs a JCB in the morning! Look after yourselves!

DGD my little snotbag's IgG is 9.9 which they say is low and if it doesn't rise her immunoglobulin infusion will need to increase. I am sure it is not the same as DGGS as DD does not have coeliac disease. Have they not investigated this?

Toots What a bloody ambulance nightmare! Stories like that scare the pants off me as we are over an hour from hospital. Glad she is ok now and hope she had a good birthday.

Hi oldsneeze hope you and old fart are well

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Granny I was thinking coeliac but they haven't said anything. If dd is 9.9 and ds less than 0.1 isnt he supposed to be on something?

Hes not been diagnosed coeliac or anything else but ive read people with iga deficiency suffee from gastric problems (and other things too) too me its all a little confusing im sure by time dc2 comes I could be a gastric nurse at least!
Now if I ask gp he will say your depressed. Which has nothing to do with this.
The full results
Ferritin low less than 4
B12 316 whixh is normal
Serum folate 18
Hb 11.5
White cell 10.5
Platelets 379
Thyroid normal
Lfts normal
*TTG lesd than 0.1 although IgA is low at 0.6, lgG was less than0.1. Vitamin D was 68.8 which is normal. This means child has iron deficiency anaemia and start sytron for at least 3 months.

X
Confused.com

My lovely I am too old to offer much but I think you should be asking questions, if I get the opportunity I will ask a (much) younger excolleague when I see her next.
You are getting very knowledgable not Confused.com clever Mum

Thank you.
It just seems like they are missing something.

Nd even if its nothing they should of let me know even though it makes no sense
Ds is full of cold and so am I.
Great British weather isnt it.

X

Toots! What a nightmare. If I even set foot near PICU I want to slit my wrists. It must have been so awful for you and DD. Is she on formula all the time.? Since we started DGS on blended diet he has been so much healthier generally. Still snotty with an ancient cold but happily wiping his nose on us. The peg site is fine so far. Is it a sign of below par health that it has spread to your DDs throat? Must have tracked upwards and one place she doesnt need mucus and swelling is in the throat. At least she is home again and you have help, no one needs this much excitement in their life . I would report the 999 ambulance because they need to put systems in place for checking oxygen and suction! Hope all is going well and enjoying lovely weather.

Nooo idea what IgE readings are about, but at least little isitme can have the iron down his tube. DGS had it at 6 months and the screaming and spitting was horrid! Tastes foul apparently! Keep pushing to find out whats going on though.

2old. Quiet weekend wishes for you and hope DD is showing some improvement with her infusions. No mention of the dreaded ffs f*ts..get it right oldsneeze We are all fine. Cleaned car (!) cleaned house, sorted filing Going to watch TV, and so to bed

PS. DGS keeps eating his blended foods...korma curry...no one told him they are meant to go down the tube! Its cos I make them so yummy

Oo thats good he eating it.
Before peg and when he wouldnt eat food I used to blend his food and syringe it into his mouth. He used to think I was giving him his meds so it worked fine for a bit but gaatr turned round and said yiu shouldn't have to feed a child like that.

Hows the weather where everyone is?
It waa warm yesterday!

And looks like another nice day again woop x

Weather is lovely today and yesterday. Looking icy again for Wednesday though. Still make the most of it.

How stupid to say not to feed a child purée if that all he will eat. Children who've had neurological problems often develop sensory issues and are not keen on lumps in food. They just need to go at their own pace. DGS would not sleep on his own for 4 years as he just got scared. Now he's put in his own bed and he just snuggles down and is asleep in minutes. No controlled crying or other crap shite that's some advise!

That's good he sleeps well. Ds is in his cotbed at the high height so he can come into ours. 9/10 he gets scared and jumps in on my side. Bed now getting cramped as its me dh half cooked baby and ds.

I really fancy a chocolate. Mum said we might go thorntons :)
x

Ooo keeps goinf quite.
How is everyone?

Had a bit of a bleed today. Literally tiny amount and ive got mw appt tomorrow.

X

DGD hope you are OK good luck for tomorrow. How is your mum and her LO?

Thanks oldsneeze not too bad a weekend just 3 f.fits we all just slobbed about BUT I did find time to sort my knicker and bra drawer out....the excitement is just too much . Have pushed boat out and am having hall and landings done.
Do not understand "their" feeding regimen We always put blended diet down tubes if they didn't take it orally.Many moons ago.
Also can't get my head round 10 ml flushes between each drug poor DS would have 80mls flush 4X day

Have a peaceful night all

Dd(giddy) stuck in hospital all evening. Strong Brixton hicks we think. Baby is fine. Poor girl doesn't know what a normal pregnancy feels like! All freaked out but I think BH can get quite strong at 34 weeks? I can't remember lol. DGS bathed and fed and desperate for bed but think its best if he sees mummy first. Taking since 4 o'clock....I want to go home. Thank heavens for Disney junior! I just want life to be boring and do things like sort my knicker draw..... I remember I already did and all the size 10 frilly red pairs have been chucked. Big old lady knickers there now.

Hope all ok tomorrow isitme.. Sure it will be . Isn't pregnancy a pain in the butt?
.

Poor old Giddy but from my long distant memory I had Braxton Hicks from 33 weeks and went on to 43 weeks in hindsight they were different. So good vibes to her from me.

WHAT.... I have kept my red frillies ...living in hope!

Hi everyone. Just a wick check in before we embark on our exciting journey to get to know DS2......

Isitme and Giddy everything crossed for some smooth pregnancy time for you both. Tell those babies that boring is GOOD!!!

Will check in soon when I am mummy to 2 :-D
Xxxxx