Ava had a swallow study done today at Children's Hospital in Buffalo. We brought her baby food, her sippy cup of milk and a couple of cheese puffs. The speech therpist mixed her food with barium and I got Ava to eat some. We found out she has a "good safe swallow for small amounts of food." She also has a delayed swallow. The food stops for a couple of seconds in her esophagus. It's not as bad as the speech therapist has seen it before. She actually asked if she could use the study for her students that she teaches at UB. Her swallow study looks pretty good for a baby on a trach and ventilator. Her delay could be because of her respiratory issues or neurological. I don't believe it is neurological.
We are also having issues with Low Minute Volume on the ventilator. It alarms if Ava's mouth is open or if the air is coming out around the trach. We have tried repositioning but for our new night nurse, the alarms were going off all night - every 2 -3 minutes. Anthony is away all week so this is making me exhausted having to get up at 6 am, going to bed after 11pm and then not getting any sleep at night. Not sure how to keep it from going off. We move her around and not much seems to work.
Ava weighs 11.90 kg = 26.24 pounds. She spit up yesterday too. Hopefully she keeps her food down like she has the last couple of weeks.
Thanking God for more good news and praying for Ava to eat...
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