Today we got some news that Lung Center wants to wait 4 weeks before they make any additional changes with Ava. That means no going off the vent at night. We are still off during nap time. We really don't know what it means. Does this mean they aren't talking decannulation this summer? Are they only going to go an hour off the vent at night every week? That means it would take 10 weeks which is past August to get her off the vent. Ava also needs to go down to a trach size of 3.5 from the 5.0 that she currently is on. We have to wait until her appointment on June 5th and she is not supposed to have any illnesses which includes asthma. Asthma is considered an illness to them. In our area, the pollen count is high and Anthony's even been having trouble with asthma. It's really frustrating because we know how well Ava did while she was sick and how great she is doing now. In order for Ava to develop mentally and physically, she needs to start experiencing the world, and if she can't get sick, it's a pretty scary world out there. Please pray for God's guidance. He is in control, but he certainly is giving me the will to fight for over 825 days for my baby.
Thanking God for Ava's strength and praying for more strength for all of us...
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