Saturday, April 06, 2013

Good and Bad Day - we'll take it

Today started off kinda as we expected based on yesterday and last night - a lot of respiratory and pain issues, high heart rate, etc. and to top it off all three of us were particularly exhausted this morning. We have been doing the IPV lung treatments every 4 hours, as well as a few other things. Casey has been bouncing from being really upset during the treatments to exhausted after them, and then the cycle restarts. But we know from times before that we have to stay on top of this, even if it upsets her, or it can get worse pretty quick.

This morning's xray wasn't taken with the best angle, so the doctors will just say that it is about the same or slightly better than yesterday's - they want to see a few days in a row before they will stand behind any trend. We know the drill.

Some good news: Casey started getting very small amounts of formula in her new J-tube this afternoon. It will take at least a few days to build up to her target volume, as we have to watch for a number of issues that are common to this type of procedure, but so far it's going good!

The evening is ending well - Casey got some special get well treats from friends. And we are all hoping to get more rest tonight.

Casey's friend Guily is having her own good and bad days, so please continue to keep her in your thoughts.