Sunny Days

  We had a busy week this week! Between doctor's appointments(both scheduled and unscheduled) and our first meeting with our Early Intervention Physical Therapist......we're just grateful for a chill Friday. Monday was just one appointment at Nemours - and hour and a half drive, but it was good! The Pulmonologist said she sounded great, and wanted to experiment with bringing her vent support down a little bit more by deflating the cuff of her trach. Sunny's trach has a water-filled cuff that, once the trach is in place, gets filled to seal off her trachea so that no air escapes. By doing so, it cuts off air from getting to her nose, mouth and vocal chords.  Deflating the cuff - he suggested for a few hours a day while she's awake - will allow her to breath a little bit more on her own through her nose and mouth, in addition to her trach breathing. We're excited to try it, and also quite excited to be able to hear her a little more:) Tuesday was rough, and she was ge...

  Somewhat surprisingly, last Sunday we were able to stay at church throughout the whole service! Sunny's end of the week and weekend were a bit off - she was nauseous and we were having a hard time figuring out if this was her typical "retch days", UTI(again:/), or something else.  At the beginning of last week, Chris had purchased some at-home UTI test strips as we were all paranoid of another infection when her retching began. So, Sunday night after a sad and gaggy day, we tested her urine and it showed positive for leukocytes; likely an infection. We took some time and got ourselves ready for likely another hospital admittance, and then took an early Monday morning trip to the ER.  When Sunny is doing okay and not needing emergent care, we drive to the Nemours ER so that if she does  need to be admitted, she's already with her team.  Around 4:00AM we were situated in a room in the Emergency Department and told them about the positive UTI test, her recent UTI...

  Sunny's week was a little weird, but pretty good.  Sunday, we had planned to head to church and then a cute little makers market afterwards. We did a reeeeeally good job at working as a family to get ready for both. We had to get Sunny in her "to-go mode", pack meds and milk, and get all of outside dressed (& caffeinated;). It went very smoothly! We weren't rushed, and even left early!? But right as we were pulling into the church parking lot, Sunny started crying. While the trach makes it impossible to hear any noise when she cries, there's still a difference in her cries. This one wasn't her normal could-be-fixed-with-a-suction-or-diaper-change cry, it was different. It was harder, her heart rate was going up and her blood oxygen saturation was still within her goal range, but it was going down. We tried a few things in attempts to fix whatever was bothering her, but nothing was cutting it.  We loaded everything (oxygen tank, ambu bag, pulse-ox, suctio...