taadaa shiny new gastrostomy support thread no.3 tube feeding support

[isitme1]

Taaadaaaa
Welcome to the new thread! !
New and old are welcome here

Louisa the hardest bit is being pregnant while all this is happening as I cant move as much due to this stupid spd. Makes me cry in the morning.

Sorry I am not ignoring you all, am totally bogged down with outside family problems.

DGD so glad you enjoyed the beach living just a few minutes from the sea I go there often
Pleased you are finally getting somewhere with DGGS's problems but we shouldn't have to fight for their rights
DGGS2 sounds a whopper well done
All HV's are dopey had to help our's to fill out a DLA form

Louisa sorry your LO is having a rough time, are you getting enough support?

Oldsneeze totally agree about Chloral Hydrate only use it in desperation. We use Melatonin for Annabel but not every night just for a few nights to get her sleep pattern roughly the same as ours. Jay did have it but we found his seizures increased hence the Chloral.

The scumbags are fine apart from Madams exploding colostomy bag....have resorted to attaching a litre urine bag to the lower end of colostomy to catch the shit and wind.

Once I get started I don't stop

Louisa. Yes hope the breathing problem has eased, but hot weather can't help much. Would a humidifier help?

El has had melatonin (short and long acting) phenergan, something else (forgotten!) and nothing really works longer than a few weeks.

The best sleep aid for elbear is someone to snuggle him up!

I would love to take a walk along a beach in the evening to soothe my troubled mind what's left of it

Hi everyone thank you for all the advice I hadn't thought about a humidifier but will look into it.

2oldtobe we are receiving lots of support thank you. Just still trying to get our heads around things. Once we get used to one thing the plan/meds change and we have to get used to something else. I also feel that our weeks are taken up by different tests and clinic appointments for all his different needs, would just like a quiet week for once. Does it get any easier as they get older? Or do you get you just get used to being in and out of hospital for one reason or another?

Ilovemonster how long have you got left now? Spd is rubbish

Officially I have 9 weeks on Friday. But im asking to be induced early at 38 weeks due to previous complications. I keep having nightmares of the birth.

Granny they said they will give me the meds that I had last time proactively so before anything kicks off. That should hopefully stop any pph due to uncontracted uterus. Had synotocin, tablets up bum and a clear out of clots aa far as I can remember. She mentioned thr tablet up bum earlier this time rather than when im pph'ing.

Another thing ds peg site has been leaking do you think I should have it swabbed?

Granny hope all the problems have settled now inside family and out x

ooh sneeze dad has had the phenrgan too. Now its just tamazipan that works on him and sometimes that doesnt.

Louisa I would love to say it gets easier but that would be lying lol. You learn to cope in different ways.

Here pic

Ive given it a good clean. It was fine this morning if it gets worse or happens again will get it looked at

Need help with spd. Cant even turn in bed anymore without it making me cry :( physio dont have appointment until 8th of August and they can only give crutches or admit to hospital when its really bad.

Fuck.

Also wwyd? Ds appointment for all his tests is on 24th july. If im ok thats fine we cam do it. Would you do it at 36weeks pregnant? With baby measuring 6weeks ahead!!

Call the physio department and ask for a hip band to support your pelvis. They gave one to jess but she didn't get so bad she needed crutches,

They wont do anything until they see me. Ive found a new way to turn in bed which helps a little- rolling over on to bump and then picking which side I want to go on.

Just come back from walk in centre. His peg site is infected (still gooey) so rathet than having it swabbed and wait for results shes prescribed antibiotics so it doesn't get worse. If it doesnt clear up then needs swabbing.

DGD just caught up with your last posts, Annabel's always looks grotty, I just put Vaseline on and a buddy button and as long as she is well I carry on, Sorry I am very laid back but as long as she is well "am I bovvered"

Not a good week here both Ben and Jay are fitting their heads off.
Using OF's computer bless him as mine USELESS!!!

Love to all scallywags XX

2old. Hope ben and Jay can come out of their fit fest soon. Are they unwell and is this causing the increase. I bloody hate shitty epilepsy. Go away and leave the LOs alone . Give them a big hug from us and drink a big G&T when it all stops. Is ben looking at DBS? Or did I dream that?
Xxxxx

Granny he was starting to spike temps and complain of pain all of a sudden which is why I got him checked. Still gunky.

Hope the fitting stops granny I thought you got your own computer back?

Hi sorry not posted sooner things have been a bit manic here!

Ilovemonster I hope you and ds are feeling better. You could try the gp for spd they should be able to give you something for the pain that is safe to use in pregnancy.

Granny I hope the fitting has stopped now, nasty epilepsy

Sneezecake hope you and your dc are well?

We have another manic week and have appointments with genetics, neurologist, salt as well as the normal stuff like community nursing.

Louisa. We are all fine at the moment considering all the building work, which is nearly finished! Just need the lift to go in and the decorating (what fun) can start!

Appointments are endless and never end. You have my sympathies there. Hopefully you'll get a few answers but it usually changes nothing!

Hi Sneezecake glad the building work is coming along, it must be so stressful. Bet you can't wait for it to end.

Dreading tomorrow seeing the genetic team, we never seem to get any answers just more questions! Had phone call from paed tonight saying they are also exploring metabolic diseases now as well as everything else!

Louisa. Hope things go smoothly today. It's horrible not having answers, just stops you getting on with things that can improve life. Good luck xxx

Louisa how did things go?

Sneeze how are the boys and jess?

Granny are you ok? Has the fitting stopped?

This baby elephant is measuring weeks ahead!
At scan he was 5 weeks ahead then at 30 weeks he was 6 weeks ahead and he was measured yesterday and hes coming up as 41weeks! Im 32 weeks on Fri! Hes also transverse

We are all ok and the extension has been finished, just waiting for the lift and then the decorating/flooring starts.

Heavens, that must be a baby elephant in there! If he stays transverse it's a section which, if he's that big, might be a less painful option

Ooo decorating sounds fun

I just dont understand how hes so big! I dont have gestational diabetes. Im not over eating to the extent that this could happen. I will have a bowl of cereal with semi milk in the morning, no food until dinner (will have squash and water) after dinner I might have some ice cream if I fancy some if not nothing until tea. Will probably have a packet of crisp if I'm hungry when kids are asleep.
Right now its fasting so instead of crisps I'll have a bit of what dh is eating. My diet now is better than before!

I have a scan on Wednesday and see consulant after for a birth plan. I dont think hes moved. I think hes too big to flip around now.

Hi everyone, hope your all ok? Sorry I have not replied sooner, we are back in hospital again we were admitted Wednesday ds2 turned grey and had sats of 50! They think his reflux is so bad that he has been aspirating into his lungs. He has a ph probe test tomorrow to see how bad things are. He's not had his meds for a couple of days now and he is miserable he's also needing a lot more oxygen. Hopefully we will get the results soon and then they can give him the help he needs.

Ohh louisa hope they get the results soon x hope hea feeling better soon too.
Was going to post and ask about advice for leaky peg site. Its leaking after feeds with feed think I need to increase feeds again to fatten him up
how is everyone