• Airway is stable and she is on a conventional ventilator again. Still lots of support from it but they have been able to slowly wean the support since midnight and Faith is agreeable.
  • Blood losses are getting a little better.
  • Nursing is 2:1. Two nurses, one patient. She is a handful. Just suctioning her ET tube requires 2-3 nurses and a Fellow and a Respiratory Tech if they are available.
  • Increased the sedation to keep Faith more agreeable.
  • Her room continues to get smaller, the walls are not closing in. Her stuff is expanding to fill all available space. Soon Sue and or I will be sleeping in the hallway outside her room. Hope this isn’t the week the fire marshal makes his walk thru.
  • Blood pressures are up-down-up-down-up again that’s a job in itself along with keeping the CVVH dialysis dialed in right to take fluid off at the right rate.
  • She is about 1,000cc’s down from her total of 5,000cc fluid overload so we are trending in the right direction at a good pace.

Everything can and does change so quickly. I will do my best to keep you all informed.

4 thoughts on “DAY 37 – CHONY PICU – DAY

  1. thank you for always sharing your heart with us all. Maybe it does help you to write out your thoughts, and know that you are educating and inspiring so many people with your words, and with your model of parenting. I have to say that “actively dying” is possibly the most heart-wrenching phrase I have ever heard, true thought it may be. Just as true as “she is a handful”. Faith is also blessed that you are committed to her journey, wherever God’s path will take her. Prayers are for you all always

    • I am at times both envious and saddened for “those” families that do not have the strife and challenges mine has. They may never know and appreciate the true gifts they have, or appreciate in the grand tally of life what is really important and to find peace and happiness in the small accomplishments and knowing that the work reaching a goal is often more important than the goal itself. Fair doesn’t mean equal outcomes but rather the freedom/freewill to choose to accomplish what we want from life. Ask yourself the question I always do “What have you done with what has been given to you”

Comments are closed.