tube feeders roll call

[Nowhere]

hey NG, NJ, J, G and TPN mummies

just thought i would do thread to see how all of our tube dudes and tube divas are going, any one got any great ideas to share or just want to vent lol

so i will go first lol just to get us started

mikenzee is 20 months old
on continuos feed for 24 hours a day
neocate normal stregth 35 an hour if we lucky of late its diluted with pedilite and rate not going so well
she has a Infinity pump we got it though nutricial its the tiny one fits in toddler back pack
she has a bard G at the moment getting a Mic key GJ on thursday next week


mikenzee is diagnosed with servere GERD servere DGE, and bowel dismotility, she is also intolerant to every thing and malabsorbs fat, carbs and sugar, she eats nothing by mouth not sure is she ever will,she is happier not to kwim, we are not sure whatis causeing all her issues she has other hurdles other than her GI issues but the GI issues are by far th most frustrating at the moment

she is curently waiting on chromosone test results the main syndrome they are looking at i velocardio syndrome, or a neuro issue that causes vomiting and seizures

meds she is on for GI issues are
losec
domperadone
maxalon
gastrogel
movacol ( not at the moment she is leaking)

So thats mikenzees tube feeding story please go ahead and share yours

[kiwibird27]

Megan is 17 months old

Gastrically tube fed 22 hours a day on a rate of 47 mls an hour on 20 cal Elecare. Doesn't eat as it cause her to stop tolerating milk too and she can't live on gastrolyte. We have a nutri-port and a kangaroo backpack.

She has a rare genetic metabolic condition known as Congenital disorder of glycosylation 1a

Failure to Thrive
Liver disease
Hypoglycemia (HHI)
Protein leaking kidneys
Chronic reflux (had a fundo 5 months ago)
Global developmental delay (at a 6 month level)
Moderate to severe hearing loss (wears aids)
Short sighted (no glasses yet)
Leaks out immunisation antibodies
Pericardial; effusions resulting in a window (cardiac)
Perforated bowel from an NJ tube last Xmas
GOOD LUNGS
Slow bowel motility

Medications
Losec
Zantac
Urso
Diazoxide (for hypoglycemia)
Ondanzatron
Pentavite

Currently have in home...
Physio (Every 3rd weekly)
OT
Fine Motor therapy (fortnightly)
Royal Institute for the Deaf and Blind (Weekly)
Learning links playgroup (weekly)


All up 7 1/2 months in hospital, currently home and all is good!!!!!

Otherwise, happy cheerful, funny baby, never bored have lots of appointments to keep us busy

[kiwibird27]

Forgot...Am without a computer from tonight till Dec 3rd cause we are moving, will catch up with u all then

I want to see Fiona list her medications.......LOL........That would take a week!!!!!

[fiona76]

Stacey, you asked for it!!

My dd is two and a half years old. Diagnosed with Complex 1 and Complex 4 Mitochondrial Disease. Way too many issues to mention, but the biggest issue is a dysmotile gut. Started with delayed passage of meconium when born. Sever GORD, Delayed Gastric empting (took 96 hours for stomach to empty 20mls gastrograffin), 3 unsuccessful fundos, 3 bowel resections, pyloriplasty, ileostomy, malrotated bowel, no peristalsis what so ever! Cannot tolerate any type of oral or tube feeding and have spent 20 months out of 30 in hospital. Last admission spent 4 weeks in ICU for poly bacterial septicemia caused from her gut.
She has a gastrostomy (on free drainage), a formal jejunostomy, and a double Central Hickmans catheter for TPN.
Meds: Losec, Zantac, Maxalon, Domperidone, Cisapride, Ondansetron, Carnitine, CoQ 10, Lipoic Acid, Vitamin C, Vitamin E, Riboflavin, Bactrim, Gentamycin, Ursodeoxycholic Acid, potassium chloride, Octreotide injections.

Other than that, she really is a normal toddler!!! :flowerz:

[Nowhere]

hugs to you fiona

poor litle baby, glad she is a normal toddler other than all that

i feel like i spend all my llife doing breathing treatments and meds my god you must go for hours

lets hope no more long stays in hostpital for her

[naiwen]

Well DS is rotating between NG, IV and oral feeds every couple of weeks (he has a suppresed immune system and every time he gets something he gets put on bolus and then graduates to NG).
I am not sure if I can join the rollcall but our meds are as follows;
Losec
Zantac
Duocal
Pentavite
Ferrus sulphate

Edward was born at 30 weeks he had IUGR (interuterine growth retardation) and Respiritory distress syndrome. He has a suppressed immune system. Reduced lung capacity (functions at 90%) and failure to thrive. Severe reflua and developmental delays.
He is a very beautifull cheeky boy though.

[kiwibird27]

FIONA......your such a show off if all your meds.....LOL

Naiwen, of course u can join!!!!!