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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


Giddypants Wed 06-Feb-13 08:12:17

Good morning all, feeling a bit better re cough and cold DS is still coughing over night, driving me mad, cough, cough, puke all night, he settles and goes back to sleep for five minutes then its the same cycle again, gggrrrr! Gave him some cough medicine last night but he kept shaking his head after every bit, wonder if it will work the same if it just went into the tube?

isitme hope you are ok, I had worryingly quiet periods with this one up until about 25 weeks or so, he still freaks me out when he's quiet in a morning, but I have to remind myself that he was active all night and probably just getting some rest.

galli Luuk is a lovely name is it Dutch? I'm stuck on a name for this one keep liking one then I go off it, I had loads of girls names!

welcome toots nice bunch here, (sneeze is my Dmum) so we repeat the same thing grin

2old an over night stay shouldn't be too bad, agree with trying to get a cubicle but make sure you rest and take it easy, lots of magazines and entertainment!

Hang on, do I smell poo? <sigh> just hope it's not down his leg or up his back this time!

Isitme1 Wed 06-Feb-13 13:56:27

Bit slow today. Granny are you in hosp??

Dc is well had a scan yesterday and that was fine. The only concern was pre eclampsia as ive had high blood pressure+ protein in urine plus headache and doddodgy eye sight so ive been advised to have bp and urine tested twice a week and have mw appt on tues and one with consultant on 25th. Dr said it starts after 20 weeks.
Hope everyone is well.
Giddy the cough syrup only works takeb orally. Thats what pharmacist told me once.

Giddypants Wed 06-Feb-13 19:59:17

yay isitme glad you and dc are ok, try to take it easy, pre eclampsia not good early on. You need to relax, feet up and drink plenty of water, make sure you are having enough calcium too, new studies have shown that it can reduce the risk of pre eclampsia.

Hoping for a restful, night xxxx

2old2beamum Wed 06-Feb-13 20:31:27

So glad you and yours are OK Grandaughter, Listen to Giddypants pre eclampsia is not good and I am glad they are seeing you biweekly. I had full blown eclampsia with 1st homegrown can't remember a bloody thing! And no am not in hosp I go in 1st March for a minor op on neck which will make a new but still old woman confused

Mixed day here DD immunology appt okish levels but wt down 1.5K over 6 weeks. Both DS's managed 5 seizures between them but heyho that's life

Have a peaceful night if possible xxx

Galli love the name Luuk too. Saw a lovely name the other day ( now no laughing) Stig

gallivantsaregood Wed 06-Feb-13 20:49:45

Hi everyone!

Isitme, so glad all is well. Hope the pre-eclampsis stays away.

2old...... Busy busy. Exhausted just reading your post, Hope the seizure monster buggers off and DD's immune results are better next time. Good luck with your op. Hope all goes smoothly.

Sneeze: Hope your snot dries up soon smile

Giddy: Hope you both feel better soon! Tip you are spot on, Luuk is indeed Dutch, as is he ( was born there).

Toots, how is DD s site looking now? Hope it clears soon

Well today was Luuk's 8 th birthday! I can't believe my miracle boy is 8! Docs said he wouldn't survive birth!!! Has been lovely and he is just fantastic!He had a Skylander cake! I love him sooooo much. He has turned my life upside down but shown me just what is important smile

Hope I haven't missed anyone blush

2old2beamum Wed 06-Feb-13 21:02:06


gallivantsaregood Wed 06-Feb-13 21:12:02

Thank you :-D

Giddypants Thu 07-Feb-13 08:15:04

Happy birthday Luuk !

Isitme1 Thu 07-Feb-13 08:43:16

Awww that bought tears to my eyes. I know he would of had a special birthday!

And I know its late but happy birthday to the beautiful lad.

Makes you remember everything you've been through but makes you appreciate the little things more.

Ds trying to pit 3 words together smile

Oooh right granny hope you feel better after it.

Giddy the dr I saw that day didnt say much about what to do but im sure cm mw will do.
Mum thought I had it with ds as I kept seeing black dots and all of a sudden I became swollen. It was that bad that I couldn't get legs into tracki bottoms that fit me the day before but as you've probably guessed the hospital didnt check anything.
The never did bp or urine!

Giddypants Thu 07-Feb-13 19:02:57

Finally got the dietitian to ring me back today, only took 3 days of messages!
Needed her to change to overnight bag to just plain feed (no added fibre)
She then went on to quiz me why his bowel movements had become so numerous all of a sudden, so told her about the BD think she took it better than expected, told her about all the good calories, fruit and veg that was going down and satay ing down.
She just said that she obviously couldn't advise it, and neither can the tube companies, which I understand they have to go by their guidelines.
But she didn't sound like she was 100% against it!
Said I've been keeping a food diary and I'll bring it with me along with some of the recipes that mum has concocted when we see her in march.

Otherwise fine here, had a scan this morning, baby appears to be growing well, and is head down, but still quite high up. The midwife said that he had a good covering, and not skinny! So going to be known as DSs fat little brother grin

gallivantsaregood Thu 07-Feb-13 19:50:16

Isitme: Whole sentences from DS. Very excited for you :-D Re docs, make sure you keep them on their toes!

Giddy: Great re dietician. Having her not 100%against is def a bonus. Hope little chubby isn't giving you too much discomfort.

Luuky-boy is not very well again. Antib's finished on Monday night ( strep inf in his button site). Yesterday, his birthday, temp started to go up. Today it's 38-38.5!! Waiting on ringback from consultant. Luuk is surprisingly hapoy though..... No puking!

sneezecakesmum Thu 07-Feb-13 21:50:52

Galli. Hope luukilad is not any worse and late happy birthday. Someone said manuka honey on the wound site? Should make him ill systemically tho. Hate temp rises but its how the child looks not the thermometer that is important. DGS was another of those 'not expected to survive' happy endings. Luckily they told us after he'd decided to survive grin

Isitme. DD has been on baby asprin since around 14 weeks because her private scan showed notches on the uterine arteries which MAY lead to pre eclampsia so her doc put her on the asprin. Think it is not advisable with kidney disease though, but just mention it to your cm mw as it seems to stop pre eclampsia. But at least you are being monitored.

2old. Wish something could be done about your DSs seizures, its no life for them to go through that crap sad Do not envy you having surgery, I'm sure you will be fretting about the LOs so apart from when you are anaesthetised you wont get much rest! Not looking forward to DDs c-section either. sad

Didnt post yesterday as cooking up more low fibre blends for DGS to stop him s***** through the eye of a needle! Think it is slowing down. Neuro yesterday said he had severe CP as he just flopped then did his impression of an ironing board! When he doesnt want to be somewhere he acts like he cant hold up his head and ignores everyone. Doesnt matter as they dont want to botox him and stick a baclofen pump in him. They are starting him on benzheoxol for a trial period to see is it stops the unwanted movements that interfere with the wanted ones. Looks good on paper but we shall see.shock

Also shock at dietician not being totally anti!!

Isitme1 Fri 08-Feb-13 17:17:02

I have to say we believe that there are 100s of things honey can cure.
Ive seen it too. While I was in ds homeland I kept getting big septic blisters on armpit. They were very painful amd full of puss. I had 3 lots of antibiotics plus had it scalped and what not but nothing worked it kept coming back. Dh had some 100% pure-just-collected honey and I put that on once on the thing and ive not got it since.
Do try it!

Giddy glad the dietician was okish with bd. Ive been giving ds 60mls every day of fresh or baby food with some added bits in. Bm a littlw better.
The other day I did chicken broccoli cauliflower tomato ketchup anf olive oil smile
Today was baby food plus olive oil.

Had bp anf urine checked yesterday and both were ok.

Sneeze I've got that much pressure on my kidneys its horrible. Will see what they say about it.

2old2beamum Fri 08-Feb-13 19:01:22

Can't believe it's Friday hectic week.

DS finally stopped fitting over night. Have had a load of bumff from Nottingham Hospital and an appt to attend clinic for an intrathecal baclofen pump or SDR. I am sure it will help us with his care but is this right for HIM.

Sorry to mention dieticians (ducks to avoid missiles) but she has mentioned Neocate for DD. Any views?

Grandaughter glad your BP and wee are ok. You mention kidney pressure you must get it checked.
smile for DGGS putting words together I am so envy

Oldsneeze to be honest I shall be glad to get it sorted. Have alerted the community team. Yes I will worry about my little treasures hmm but it is the seizures and colostomy that are my main concern, old fart will panic.

Giddypants hope you and Elliot and fetus are OK

Galli hope Luuk is a bit better, mucky gastrostomies are difficult to sort out.

Have a good night xxx

sneezecakesmum Fri 08-Feb-13 19:30:03

2old. Colostomy is just poo problem, the seizures would freak me out. Can shovel shit for England but hate fitting sad

Giddy was told foetus was well covered...obese newborn hmm. Nursery want photos of the kiddies as babies. Maybe a pic of DGS with tubes, machines etc and looking like a skinned rabbit will scar them for life so maybe not grin

No idea re neonate though. If DS is stiff and painful in his legs intrathecal baclofen is the best bet but SDR I think even better. IB takes a fair bit of management and has dire consequences if it runs out. My bet would be SDR. Think I remember u saying DS is not likely to be mobile? Or was that another DS? grin.

gallivantsaregood Fri 08-Feb-13 20:40:17

Sorry just quick reply- I now have to go to breast clinic after finding a rather large lump under my arm:-( Obviously don't want to tell mum since she's struggling just now. She's just started on the hormones and is crying at the drop of a hat and starts her radiotherapy next week

Don't have any idea what is happening with Luuky as his temp is spiking just once a day-to-day weird! Gas Manuka honey every day will try and get some medical grade stuff for his stoma :-D

Glad the seizure monster is getting tired Andes getting some relief 2old xxxx

2old2beamum Fri 08-Feb-13 21:08:52

Oh Galli what more! I am here if you want me!

Oldsneeze I am glad poo is easy for you!!!!! I find coming downstairs (LO's sleep downstairs) @05.45 to get them ready for transport @ 07.15 to find poo in hair, toes, ears and fingers not I repeat NOT pleasant but as you say 1000x
better than seizures!!grin

I am now switching off for a glass of wine

Isitme1 Fri 08-Feb-13 22:26:35

Granny you deserve the glass of wine
Im not too technical so cant help woth the sdr sorry.

Galli we r are here for you. Hope things are ok let us know.


sneezecakesmum Sat 09-Feb-13 09:56:34

Galli. Thinking of you too. I'm sure it is just something and nothing but can imagine how terrifying it can be. I had this years ago and it's very common. Fingers x though.

I love a G&T but get a headache next day after just 2 (small) glasses so never drink alcohol. sad and teed off. Would love that relaxation you get from being a bit tipsy! Does DD keep the colostomy bag on overnight?

gallivantsaregood Sat 09-Feb-13 11:32:06

Thanks everyone. Am hoping it us just extra muscle or something....... Thank you all so much. Means alot, especially since I don't really want to talk to my mum until I know its def nothing to worry about. Xxxxx

On a happy nite, going wedding dress shopping for mum today. X

2old2beamum Sat 09-Feb-13 14:50:32

Galli I am so glad you are being so upbeat. Hope the shopping goes well I am surprised you didn't ask me after all I am the fashion guru of East Anglia says her who lives in jeans and baggy sweaters grin Love to your Mum

2old2beamum Sat 09-Feb-13 15:03:30

Bloody computer I am sure it has SN.

Oldsneeze I do manage to keep bag on at night on madam but need a litre urine bag attatched to outlet as she sometimes passes 2 litres of wind overnight so we can let the wind out also can have liquid poos so that can drain into the bag! About 1x week the bag unsticks (when nurse comes and gets her ready for bed) DISASTER sad
Re alcohol Can no longer do it like I used to sad I just can't sleep

Hope you are all ok off to watch rugby.

sneezecakesmum Sat 09-Feb-13 20:55:37

Galli. the one stop breast clinics are brilliant. I think they tell you on the day what the crack is, and the majority are perfectly OK. cakking yourself with anxiety at the time (I was) but its usually good smile Congratulations to your Mum on getting married smile

2 Litres of wind! Sounds like my old man! Seriously, is it all dietary cos of the JPeg (think it is a DS with the Jpeg?) hmm It there nothing that can be done to ease it all. The colostomy was supposed to make life easier! Cant sleep well either, so take phenergan at night.

Rugby...6 Nations? Think England are doing quite well grin

Isitme1 Sat 09-Feb-13 21:39:05

Galli hope everything went ok. Congratulations on mum getting married. Did u try the honey?

Granny thats something I dont miss smile

Isitme1 Sat 09-Feb-13 22:36:04

Quite upset atm. Silly hormones.
Dh is out on a family errand and hes got the house keys! .

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