unfortunately due to some really incorrect bad advice we are still waiting till tommorrow to get our oxygen..the biggest offender is centrelink..anyhow more about that when I am not paying $2 per 20 mins!
Felix is doing well but the brocialoscopy while enabling the doctors to see what is going on has not provided the answers why?so we are now going to be coming back for a lung biopsy in 3 weeks, due to his age and size it requires opening his chest postly through keyhole but depending on what they need to do to how much thye have to cut him
The specialist thing what the CT scan and brocialoscopy have shown up warrents a biopsy and the good news is that it is a final test, if we dont get answers but they can see clearly the scarring and inflamation they have seen on the scans then even without a dianosise they will trial him on anti inflamatory medication (like steriods or or types)
We also have started suppilimenting but it is being done the way I wanted it, I express 100 mls 4 times a day and I add 1 scoop of goats formula and half a scoop of polyjoule and it makes the EBM double the calories! He drank 250 mls of it yesterday so it seems to being going well so far..fingers crossed this keeps us away from the nasal gastric feeds and another tube at night!!!
So tomorrow they will set up the oxygen at home and train us how to use it..you cannot understand how anxious I am to be going home to my own bed it was a week today since we arrived!!!!!! We are in a ward with several very sick babies including one with a very rare virus, and others over the days who came through emergency with huge fevers or temps, meeting the other parents has been interesting but when a group of parents I shared the room with for a few days left I felt so sad and lonely..It really is the most intense environment, but I am lucky Felix is able to leave the ward during the day for a couple of hours at a time!
Anyhow looking forward to being back on and chatting to everyone again!!
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