June 29 Update

• Olivia weighs 4.9 kg or 10 lbs 13 oz

Respiratory

• Olivia’s PEEP was weaned to 7, and then 6 in the last week, and her pressure support went down as well
• Today Olivia spent 15 minutes off the ventilator!!!!!!!!!
  • Called a “trach mist” or “sprint”, Olivia was disconnected from the vent completely
  • She was provided with humidified supplementary oxygen at 28% (we breathe on 21%) for 13 minutes
  • She then spent 2 minutes on room air!!!
• EDIT: She later did a 30 minute trach mist as well!

• Her NP, nurse, and a few respiratory therapists cheered for her when she finished this first sprint
• Tomorrow, she will attempt to spend 30 minutes off the vent

Training

• Becky finished her last trach change, and is independent on all of Olivia’s trach cares, in case of emergency! This means that a nurse or RT doesn’t have to be in the room every time Becky and Max do trach tie cares (a daily activity)

• The home vents and other equipment have been ordered, and should be arriving any day now. Once arrived, they will be checked by staff, and then Becky and Max will have a few 2-hour sessions of training on the equipment. Olivia will be placed on her actual “home” vent for a few days.
• After training is complete, after Becky and Max have finished checking off the items on the nursing and RT lists (proving they will be able to care for Olivia once home), they will get to do 48-hour in-house stay (at The Fran, not in their house).
  • At the stay, they will respond to every alarm, notify the nurse when it’s time for Olivia’s meds and feeds, and essentially be the sole caretaker for two days. They cannot wait.
• The team is planning a preliminary discharge meeting for next week!

Personal Note from Dan: For those who aren’t reading between the lines, our little girl is doing tremendously well. It’s no longer “scary” to go visit her anymore, now it’s something we all look forward to! She’s active and aware, and just like any other baby…with a few more wires and tubes! Becky spends most of her days there, Max is there before and/or after work (but has discovered that he can’t get much work done while distracted by her cuteness and staff interruptions), but the two of them are just absolutely crushing it. If you were ever worried about reaching out, please don’t hesitate now, spirits are high!