Toronto Day 29

A good day with slow and steady progress. Noah had a bit of a wierd night, needing 5 litres of oxygen through his CPAP. But we are down to .5 litres during the day now through nasal prongs. Although, a rough afternoon with the lungs again...ventolin every half hour for a few hours and again SO much secretions. It seems that those lungs do really well in the morning after the night of CPAP, but by afternoon he starts to struggle a bit. So thankful for the CPAP to give his lungs a rest each night. He is still a bit fluid overloaded which is part of the lung issue, so more lasix today to try and get him fluid balanced. The team is still quite confused as to how Noah's respiratory status seems so closely linked with his tummy off suction and feeds started. Oh yes, did I mention that we actually started feeds today?? Just a trickle of 2 mls an hour through the J tube, with his G tube open to vent/drain, but so far so good. And the NPO sign is off our door! Baby steps...but it's something. I expressed my apprehension about pushing feeds again, and I was reassured that we wouldn't be "pushing", but rather Noah would tell us what to do. And they have no intention of taking away the TPN if Noah can't gain weight on whatever amount of formula we manage to get into him. Makes me feel better as last time we pushed Noah so hard, and went so downhill. I refuse to lose all the ground we have made with his weight.

Morphine is almost weaned...by tomorrow he should be off the infusion. This will be nice as it means he can be off the monitors too. Still very low energy, but in time that will come.

Brad and the kids have arrived safe and sound...it is very busy now, but so good to be together again. A month is just far too long to be apart. Noah was quite thrilled to see everyone, although he didn't seem to sure of Joshua with his new haircut (even I can't get over how different he looks!). Thank you, Alison for the welcome packages for the kids, and for the gift cards you brought last week...you have been so good to our family.