Gadgets and Gizmos...

...that's what we have begun calling all of the equipment we now have at home for Alegria. We have an apnea monitor which alarms if she stops breathing more than 20 sec. We have a pulse/oximeter which alarms if her oxygen saturation drops below 90%. We also have a suction machine to help keep her airways clear. We have an ambu bag connected to an oxygen tank in case of emergencies in which she actually stops breathing again. And we have lots of wires, cords, and tubing :)

Thankfully so far we haven't had another episode since Saturday, but the doctors felt it would honestly be a matter of how frequent (not if) they would happen again. So Ali is continuously hooked up to the apnea monitor and she is on the oximeter as needed (especially at night). Her siblings have all been enjoying frequently reading the numbers on all the machines. "Mom, the green number (heart rate) says 142... 143... now it says 150!"

I am so thankful to be home and thankful for the tools God has provided us to better care for Alegria. We arrived home after 7pm on Monday, and I must admit it was a bit overwelming to be troubleshooting 2 new machines in the middle of the night the 1st night. I had to keep reminding myself that we would eventually get them figured out and that they would be helpful when we did :) Now the machines are under control, and while the oximeter does have a lot of false alarms, we are learning to adapt again.

Alegria's PEG tube feedings are going fairly well. We have not had as much problem with projectile vomiting since coming home this time. I have decided to try to eliminate all dairy from diet to see if that will help more though as I read one statistic which said over 50% of reflux is caused by intolerances to dairy. I figure it can't hurt to try it at least.

Thankful to be home again,
Jill