Its been hard to update, but here goes…
Elie began throwing up after most daytime feeding about a week and a half ago. She was still ok at night however, as we attempted to work with GI on getting to the root of the vomiting. Then I heard her coughing in the middle of the night and had to scramble for the suction machine to clear her out. At that point we started keeping her pulse-oxygen saturation monitor on at all times. Unfortunately, we could not keep her oxygen level up at a comfortable level with just suction and the cough assist. As a result, Bean is now on supplemental oxygen 24hrs a day.
The vomiting seems to be improving a bit since…Nurse Agnes started last week! She’s been a great help getting us more comfortable with the machines, and hopefully soon will allow me a break. Nonni was here all week last week as well which let Elie have an extra playmate besides old Mom and Dad.
Elie is a bit tired today after a particularly rough night. She’s wakes up every hour or so these days, which has exhausted us all.
So now we are tangled in even more tubes which threaten to confine us to the house. But we’re fighting it! About to take a Fathers Day walk with Daddy, just now involves an oxygen travel tank, some hoses and an oxygen monitor.
Sorry about the delay in posts, not to mention Elie’s big THANK YOUs for the books, rainbows and gifts from Amazon!