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

Giddy pleased to see your typing is as bad as mine. Hope you are OK and your LO's and DH ofcourse.

DGD sorry you are having a tough time with DGGS's chest Look after yourself.Please let us know

Oldsneeze YES I HAVE SPENT MEGA BUCKS ON BLOODY BUDDY BUTTONS ONLY 7 OVER £30!! and that was a special offer!! ?Sadly lived with academic Dad who did not teach me sewing chores (could change a plug at 7 )

Sleep well my friends XX

my swollen fat fingers can only mash the keyboard now

Been a hectic few days here. Ds is a bit better but still got a barking cough at times.
Hes on antibiotics but gp thinks hes becoming resistant to some.

isitme. I think cos your DS is so undernourished lately with weight loss he has no resistance to these infections. Wouldnt surprise me if the reflux was causing some lung inflammation or some such Bet you are worn out with it all. Hope he starts to improve soon and if any nice weather (huh) arrives soon things should look up.

Bitch midwife made DD (giddy) cry by being dismissive of her reduced fetal movements anxiety. Take me (the rottweiler) next time and we will see!!

20ld. Bet your buddy buttons look nicer than my home made variety though? DD says DGSs peg site actually looks less red, even though its never been particularly red but even that small bit looks better than it did using the buttons

My mum taught me to hang wallpaper and paint not sew! I can also wire plugs...hang doors, chisel out the lock fittings to said door, build shelves, build a rabbit hutch. I have a tool box complete with power tools. Above are sometimes a bit wonky but functional can't rely on OF to do stuff as he gets even more OF'ty than normal about it! You can have a p*ing contest if you like. My dad taught me how to drink guiness (Irish)

oldsneeze at least you had a mum started menstruating at 10 told neighbour
blush] Beat that then

Giddy do not let MW push you around, I am sure you know on the whole MW's are cold and too practical to understand your worries. Am so glad I had my dc's before I did midwifery.

DGD keep your chin up XX.

Sleep well scallywags XX

To top it all off dh is away. Abroad.

Wont be back for a few weeks due to family emergency :(
Ds keeps asking for daddy.

Giddy I was going to ask you about reduced fetal movement's. I used to feel loads round about 2 weeks ago but now its literally the odd thing here and there maybe to kicks or whatever together.

Mw can be horrible sometimes. The last mw (well supporting nurse) made me think about how she got the job. I was finishing her sentences for her!
Granny I had a few of them from America.
Sneezw astart your own buddy business lol.
Hmm I can sew but due to school lol. I can cook but due to dh. I can do the door handle thing and change a fuse lol.

X

I'm not normally a weepy person at all, lookes at mum who cried when watching 'babe' even DH cries more than I do!! but just felt so vulnerable and like she was the only one who could put my mind at rest and was so relieved when i heard his heart beat that I just broke down. why do they have to be so snappy she made out like I was wasting her time. I was the only one there!!

having a baby born with no signs of life and being told that you were both lucky to survive kind of puts you on edge a bit.
I would never dream of being rude or short with any of my patients (even if most of them are sedated)

Isitme. Its so nice to hear that DS has bonded with daddy Hope he comes back soon. When you are pg and alone you are so vulnerable you need someone to lean on.

So pleased all us wimin can turn our hand to a bit of DIY. I have a mitre saw It is terrifying to use but needed it to do the skirting board on DSs 100 year old farmworkers cottage as they hadn't invented set squares and spirit levels back then = (wonky walls!) following laying the laminate flooring

Periods at 10 ..20ld.(visions of 'Carrie') .omg ...I was about 16!! cringe cringe cringe at the whole thing (mattress stuffed between your legs) more cringing.

Giddy ignore the bitch.
I know it's easier said than done.
Sneeze he was at walk ib centre today as he screamed while urinating. He wouldn't urinate there so they sent us home and said bring it in tomorrow. All he asked for was his daddy.
It's just hectic. Ds has baf chest ive got sore throat and ear ache. Will get it checked when i go back with ds pee.
I miss my hubby :(
Granny hope your well.
And everyone x

Throat feels better. Still got snotty nose.
Took ds back hes got uti. He needs to be referred to specialist as hes had a few and the uti should of cleared up as hes on antibiotics so it shouldn't of showed up on there machine. They know of my kidney problems and think he might have something wrong too.
:(
How is everyone? X

All OK here. Hope little DS is OK, seems to be one thing after another with the poor little soul

Thanks sneeze. How's giddy? X

im fine thanks dh off work now which helps with ds but he does my head in with all the mess he makes
poor ds still has the runs and now has an infected peg site all crusty and oozing pus gp can see us at 5pm but poor ds crying in pain. Going to be a long day.
do you think it reasonable to ask for some instilagel to help with the pain until it clears up?

Sent DH to get some intilagel, they sell it over the counter which I didn't know, seems to be working already, DS giggling at mr tumble! Will keep applying it until we see the dr.
Hope it's not an anti biotic jobbie

We've seen a locum doctor and he was brilliant. See him again next week and if theres a bug in urine (waiting for results) then he will refer seen as our gp doesn't like yo refer.
Hes still screaming every time he wees.

X

Poor ds. Ive never used instagel so will remember the name. Hope he feels better soon x

its awful watching them in pain
can you put more water down his ribe I know it will make him wee more often but it will make it more diluted so maybe not so painful?

the nurse has been out to see Elliot and his peg site she said that its an anti biotic job

have managed to give it a really good clean with the instillagel ans its still oozy and leaking think it's from him having a cold. ah well hes gone a year without much going wrong with it so can't complain really
just trying to get to have a little nap with mum. he qas getting frustrated with me cuddling him and the bump being in the way

Started with some fluclox so hopefully that will clear it it, he's still wincing in pain so have put some more instillagel and a padded dressing for over night as well as some calprofen, and got some carpool on standby for later if he needs it in the night.

He's still resisting sleep now wiggled off his pillow and having a little moan to himself. Hopefully he'll be asleep soon
Night all x

Sleep sounds good. Ds napped during dsy so he wont sleep to easy tonight.

I miss ibuprofen lol. Ds cant have it any more but its soo much better than calpol.
Yes you cant complain lol hes been a good boy. :)
Have give him lots of fluids today and hes turned around and said mama tummy hurt so its a catch 22 really. On the plus he had a really nice big sopping wet nappy doesnt take much to please me
Was at mw/consultan5 appointment today. Shes got me emergency renal scan for tomorrow so we can decide what to do as I keep getting infections.

Im knackered. Really am. I don't drive so public transport is how we roll and I can only just zip my coat up (its lasted 5 and half months of pregnancy which is ok)
We've got another almost 45mins-1hour journey tomorrow. Today was gp (20mins+wait) then hour at home for dinner then off on the hourish journey to the hospital.
X

DGS sorry you are having such a rough time hope things get better soon.
Perhaps we should have a "mucky gastrostomy" thread am sick and tired of the bloody things. Will DH be back in time for your baby's delivery? Keep your chin up XX

Giddy glad you are trying to rest it must be difficult.But not much longer now.

Things are a bit manic here (what's new) several hospital appts this week including one in Nottingham (4 hr drive) for a SDR assessment....we shall see.
As I have said Annabel's gastrostomy is so sore but it is thought to be due to her crap immunity despite weekly IGg infusions.

Sleep well you little tinkers.

Ds is buzz lightyear atm. I bought him an all in one from primark that is buzzs costume (they are night clothes) and he loves it. He keeps tryin to say to infinity and beyond lol. He even sticks his hands up in the air!

On the way to hosp. Got banging headache. Will ask them for paracetamol. Will ask them to do quick check on baby too. This one seems smaller than ds and only kicks at the bottom x

Aww poor princess hope shes better soon. X

Had a bit of a reality shock today. The consultant spoke to microbiologist and he said he thinks im becoming resistant to antibiotics. They wanted to start drip ab but then thought they should leave it for the last resort. She will ring end of week to let us know which antibiotics I need and what dose. Cefalxin and amoxicilin and trimethroprim dont work on me (have been taking them long term years ago) by the look of things I think I will be induced to be on the safe side. Will know more next month x
How is everyone?

Dh feels awful as hes not here to help x

That sounds very dire isitme. The antibiotics not working is so difficult, but at least they are taking is seriously at last Your DS sounds a bit perkier anyway. Infinity and beyond. DGS is a Wall-E fan

PEG sit looks better apparently today for DGS and not in pain. Racing around in his KidWalk walker and getting hot and sweaty, but happy

20ld. someone on BD site has suggested Flaminal for the muckiest of peg sites so getting nagging your nurse! SDR. Brilliant but big and scary! Hope it helps him even it it is just comfort

xx (giddy 7 days and counting)

DGD please take of yourself kidneys are very precious. Glad DGGS is a bit better

Oldsneeze thanks for advice will try Flaminal, our brilliant pharmacist suggested chloramaphenicol ointment so I am trying it out. Have just posted on CP thread re SDR
Thinking of giddy ah well this time next week
night night scallywags xxx]