His oxygen is now 0.5 ltr and around a 1ltr at night. Still dont have SATS machine so I am unable to find out what his SATS are doing over night - I have applied to a charity called REACT for funding for a SATS machine, and I have been told my PCN team has also just requested funding. Hopefully one way or other we will have one!
I did drop his milk intake from 2 bottle of 200 mls in the morning, 1 bottle midday and 1 bottle late afternoon, 2 bottle night time to - 1 bottle morning and night and the 2 bottles during the day. He did lose a little weight last week but it is not as if he couldnt afford to! If he looses weight next week I will adjust again to make sure he is keeping steady or doing small increases as opposed to loosing.
He has managed to be sick during some of his "gagging" episodes, making me nervouse that he has may be managed to undo his nissens. He is only sick after gagging for a while, but I have seen him do his "reflux" thing where he gasps for air while whatever is coming into his airway.
We see his surgeon next month and they have arranged for a contrast study to be done so we can see what is happening.
His Sildenafil is also being weaned after a good appointment with the cardio team! They say his heart is relativity normal, and the small ASD (hole) has closed itself! His right side is slightly enlarged but they