Im not really sure what questions to ask here or if there is anyone to even listen.
I feel so out of the loop on everything it seems all you guys know more than i do, maybe i am not asking the dr’s the right questions?
So now ive confused you all let me tell you about Gabe…
He was born on the 15th Oct 2007 11 weeks early and weighing in at a whooping 770g.
At 3 weeks of age he developed NEC and we were told to prepare ourselves as he may not make 24 hours. At 2 am the following morning (9hrs later) he was taken into surgery and had some of his small bowel taken (there words were he cant afford to lose anymore). This could be a long story so ill try to cut it down.
He has had 2 surgeries since and is doing ok. They took him off PNS about 3 weeks ago only to put him back on it today as since he was put onto 2 hourly feeds he has been losing weight (around 50g a night)
Gabe will be 18 weeks old on monday and has not yet left the hospital.
Im in Australia so I’m not sure about what Omegaven is and everyone is raving about the stuff, als intestine transplant? Dr’s told us early on that there is no such thing.
What questions should i be asking? I have know idea on his billiruben levels, i know i have asked about what sections of the bowel were lost but keep forgetting so i will need to write all that down.
At what stage in treatment did you all get to go home?
Sorry for all the questions im just very confused right now after reading other peoples stories and how they all know and i know the basics but not the knowledge you guys have.
And to be honest i just want to go home, ive been living 4 hours away from my hubby and kids for 18 weeks when will it all end and i get o take my boy home?