THE TUBE IS OUT we are being reviewed after christmas ..despite no real gain since 11 days ago, the pead (not his usual thought we should give it a go out..so he's the grand ole total of 9.7 which is a kilo heavier than 3 months ago..still petite but SOO much healthier looking
thanks for all the good vibes everyone, must have helped
YAY for Felix!!! That is wonderful news Katanya!!! 1kg gain is still heaps though!! =D>
Hopefully all of the yummy christmas food will help him fatten up more too!
(ps. pretty please come and chat with me in the new Babies Born in May 04 thread, cause I'm the only one there atm!!)
Felix recently had a sleep study up at the Royal Childrens Hospital this week, testing his oxygen levels at night (he is prescribed 0.5 litres an hours overnight currently)
IT was a bit of a drama, as we stayed in the Lodge near the hospital so we wouldn't have to saty in the ward (was happy about that ) but they didn't tell us we needed to bring our own oxygen cylinders (I thoughtit's a hospital facility they have it there??) so took awhile to organise that..then we needed a chest Xray and Felix got lost in the X-ray waiting area (locked him self into a cupboard) and then it was a big drama getting Felix and all the oximeter, oxygen, luggage etc into the lodge room..and it was meant to save us a the hassle of driving up and back to the Coast..
Next time we are going to have the oximeter dropped off down here on the Coast and then only one trip to take it back up..and can have our own bed and oxygen yay!
Anyhow the good news is Felix's specialist, Dr Francis, is very happy with him..he has managed to get through the virus ladden winter (and summer!) with little infection and increase in his pneumonitis, but it has taken a toll on his weight..
His chest X-ray shows only minor inflammation on the area where the biopsy was conducted and hasn't gotten worse..
His oxygen levels overnight weren't fabulous and the plan was meant to be to reduce the level to 0.25 and gradually wean him..however due to the cough he will stay on 0.5 till feb and another sleep study..at home!
Anyhow so the news is good so far and his condition isn't decreasing so this is wonderful for us..
ALSO on the good news front..this week (was planning on writting a pst earlier but didn't want to count chickens) he has eaten 3 meals a day all week, and at dinner he has eaten up to 10 pieces of food ..this is unheard of for him and he is really getting to eat what is needed to gain weight naturally..
SOOO..alll we need now with this good news is to have him gain the weight naturally and not have the NGT tube back!@!! We have an appointment on the 13 th of Jan and I am hoping that with Christmas we can get a gain by then so we wont get the tube back in and we can start Swimming lessons at last! (we just dot want another loss )
Ay least we get Xmas with out the NGT..next one we want no oxygen!
Sounding good Katantya. I wish Angus was eating as well as that atm. Certainly was a bit of a drama setting up for the sleep study, you'd think they'd make it a bit easier for you. Oh well, done now.
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we are being reviewed after christmas
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