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

[isitme1]

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

Shiney my love you will have to do all the seasons to even put your beautiful DD's death into perspective. The pain I have is the same as the minute after he died. I then actually embraced the pain it is all I have left and if the pain goes has my love gone. I promise the pain will not get any better but I would rather the hurt than feel nothing. The day I wake up with no pain I have lost him for ever.

DGD I don't know what to say except try not to be confrontational (very hard!!) and I always get my facts right and put it to them in a pathetic way like I may be talking out of my arse but could this be the problem. I am usually right and their paed team is fantastic.

Do any of your DC's get continuing health care?

Apart from this hope all your scallywags are not too bad. My 2 LO's are in respite roll on 8 hrs in bed!!

Shiney I really feel for you, many days at 3 o'clock my mind goes TPN out of 'fridge.....he has been dead 12 years now, I will never get over it, but do I want to??

Yes I did get to bed and ignore the jobs!! Like you I have a cleaner but do have an 8 bedroom house (justifying myself)

Yes the youngest 2 do get CHC 5 nights respite/month and 3 hrs in house care a week between them.

DGD hope you are OK agree with Shiney be clear in what you want be firm but polite. Like Shiney said they listen and act.

Take care and DGD enjoy Eid from your "good" Jewish friend

Thank you granny. Eid was lovely. Took them to Blackpool in the evening to see the lights.

It was loud in the car and ds was trying to tell me something and I shhhd him saying ok darling.

When we got home he said he was telling me his tummy was hurting a lot

feel sooo bad atm.
Ive emailed them again. They cant let him go on like this like nothing js wrong.
goimg from constipation to bloody mucus diarrhoea is not normal
losing solid vlack blood streaks is not normal why cant anyone else see that apart from me and dh.
My poor little boy who camt tell me hes hurting a lot tells me hes hurting and I cant do fuck all.
Argh. Thats got me crying now.

Sorry.
How is everyone?

Shiney how is ds now? Granny hows you and dc?

Need to find the strength to get up and clean. I just want to sit and cry.
Doesnt help that im on too.

Its not nice being sat in a room full of people ans food and your dc cant eat anything

How did the hosp go?

I emailed the nurses explaining im stuck in a horrible position. Hes in pain and I cant help him and drs just see a boy who cant br in pain as hes jumpimg and running around. I told them hes more irritable but still happt when in pain. He lies down on his tummy to help him etc.
Hes got appointment on Thursday

ive got 3 appointments this week .

im absolutely knackered. Got loads of washing and ironing to do today

how is everyone

Yes definitely will be pointing that out.
They got back to me via email and thats why he has an appointment this week at Sheffield with his gastros.

Ds2 hosp appt tomorrow
-asthma
-skin
-balance

• gums the bit of skin at the top near the front teeth is really big? Needs snipping I think

-scoliosis and head/bones -bloods? -constipation? Loss of appetite

that's his list

ds1 for immunologists
Allergies? Got better since starting this diet but still not ok. When has foods more tummy pain and constipation or extreme diarrhoea
random temps
lots of infections
neutrophil count low neutrophenia
meningitis and sepetcmia
low iga
? Thalasemia

I think thats it for them. Will have another think.

.

we didnt get the bear at nursery which tbh upset me more than ds lol.

Glad they had a good time!

Just starting up trying to make myself known within the beauty industry. Bad timing lol.
Hes had popcorn today and bad diarrhoea
after it. Does that make corn an allergen too?

Gp said ask for bloods tk be done. I forgot lol.
Ds2 was today. Hes always falling over snd we've now found out his joints move too much when walking and he loses balance
when dr was checking him he looked startled by how much his leg knee was moving to thr wrong side so we start with physio and possibly o.t.

just another thing to add to his list

how are the dts?
How are you?

Hello ladies, I've finally found you again. I lost you with the hacks and took me forever o find you again. I've just read throigh and caught up. Sounds as though lost and shiney you have both been to hell and back over the past month or so.

Shineyso glad your little man got to come home from the hospital and has improved enough to be able to come home. I hope you are able to "fatten" him up just a little bit.

Lost, i really don't know what to say. You ds1 gas been through so much and they just can't seem to figure out what is causing the belly pain and blood in his poo. Poor little fellow.
To old I want to be you when I grow up (im almmost 44). but you always are on the go and are amazing with having taken on those childern that didnt have a chace without the angle that you are taking them in and bestowing the love and care that you have. Your'e an living angel, so god bless you.

I am still dealing with mom and dad' s cancer, dad is worsse off than mom, but she is worn from taking care of him. I wish I could do morw to help, but my DH lost his job in May and hasnt found anything esle so off to work I go daily. I have to go for a brain MRI and a spinal I tap as soon as can be arranged ( fortunately in the US it doesnt take forever). The doctors are 99.9% positive I have MS, but will use the tests to see what the progression is and give me a prognosis.

I was really upset for just a bit, but hey-ho, Its not a death sentence, just an inconvenience. Chritmas seems to be coming fast and is my favorite time of the year. I just cant wait to put my fake tree up, so I can look at it.

I promise to stay more active as long as the site is not hacked and all the threads Im following get wiped out again.

Hope everyone get some rest and the LO are feeling better soon.

Much love from across the pond.
Darla

One other thing, LOST, whats the status of a council house. I know tou were trying to find something before the weather changed sin e you have no heat. I hope you are moved up on the list and find something soon before the cold sets in.

Hi all sorry for absence but as usual things a bit hectic. Right you young whippersnappers you please shutup about your ages I am old enough to be your mother Homegrowns are about your age!!

DGD where are you? Hope you are all OK love to the boys, was the hospital visit productive?

Shiney glad things are a bit calmer now for you. Having playroom down stairs will make things easier for you, DC's are 17 (looks about 11) and DD is 10. I cannot believe you get no outside help. Several friends get 10-12 hours a week. Had a multidisciplinary meeting on Friday for DS & DD and we have been offered more help. Pretty certain it is because of their complex needs.

Darla lovely to hear from you. Sorry you are having such a bad time. It must be awful, DH lost his job we have survived but it was hard. How will you work with MS hope your job is not too strenuous, BTW thank you for your kind words I am so lucky to have these children (hope the eldest 3 don't read this they will not be happy to be called children!!)

Hope you all get a good nights sleep, not you Darla it is time to get up.

Shiney yes you are right about DS and transition, but so far so good. We have identified a centre quite near to 11 miles from home. Some professionals are suggesting Sense but it is 32 miles away. Both are saying he will need a 2 to 1 which I feel excessive but will keep this up my sleeve for when the crap hit the fan

Cares assessment well what a waste of time, all they said was carry a carers card and DH should not lift going on about his heart I am more concerned about DS's back and DH's back. We have hoists but DH ignores me

CF kids need so much care. So glad you have -stolen- borrowed a percussion vest. Good on you. Why can't they give you one. Must own up when in hospital I go on a thieving spree do I care?

Take care all you lovely young things.

Mmm quite like being a thieving bugger, it's the rebel in me.
Like you we get a lot of stuff which must cost the NHS so much, feeds, pads,
beds chairs the list goes on and I really am grateful!

Re post adoption support you must be joking, we have a saying here,
TYNSO
Thank
You
Now
Sod
Off

You sound quite like me, laid back I refuse to panic but trying to keep an inane grin on my face can be hard!
Hope every one is OK, loads of appointments coming up, cleft palate today.

Sleep well X

Hi all.

Sorry about the absence. I dont know where my head is or my arse.

Darla. hope you find strength to keep going. Hope everything is ok for you and your family ive thought about you guys a lot of times. just ordered some stuff from anastasia beverly hills and remembered you lol too

granny im 23 lol.

Ds had emergency appt last Thursday and dr wanted to admit him. But there wss no bed.so got a bed today and hes currently in hospital. They might scan him tomorrow. They better do something.

Goimg om holiday in less than 3 weeks.

Shiney can you sort me a play room out too lol. How are thr dt?

I was goinf to write a big essay but I cant remember what it was about lol.
Damn.

Hope you are all ok x x x x

Wow, I thought 3 in 1 week was a lot!

Hes been admitted but they've not done anything except give him paracetamol. Which I hope they see as yes this little boy is in pain as hes had paracetamol 3x since being admitted and its not even been 24hours.

Not heard anything since but they've not had any 3 beds in this area so im a little stuck with that too

I know you said laat time that low bp isnt too worrying but 4/5x while both asleep and awake its been around 74/44. Which they have said yes its low will let drs know.

I ate a full bag of chocolate peanuts yesterday plan on doing it again today lol