They have had Sandra resting with full pressure support for the last few days as they try to stabilize her meds. They had been giving her methadone via her feeding tube which she has to digest it to take effect, obviously. The rate it is absorbed through digestion (and amount?) can vary so they've switched her to fentanyl via IV drip which is more accurate and easier to titrate. Unfortunately she seems to have fallen out of her narrow sweet spot as her peak airway pressures are high and her heart rate a little high also (40 and 120). Her face looks puffy and they report her lungs to be wheezy - puffy face, wheezy lungs and high peak pressures are sort of classic signs that she is too wet/too much fluid. Although her body weight is 49.6kg, which otherwise would seem good (this perhaps goes to show that body weight alone is not a great indicator). There are some other meds she's gotten with various side effects they are trying to manage.
Basically they are trying to get her back into balance and to start a more controlled reduction of her sedation level, to get her back to weaning. -Willem
Sounds like the name of the game is "one step forward, two steps back" and on another day, "two steps forward, one step back". Let's just hope that the "two steps forward, one step back" begins to be more the norm. Love you three...keep the faith. Cousin Marilyn
Posted by: Marilyn Tackitt | 10/30/2009 at 09:49 PM
We love you Sandra, Will and Eunhae.
Posted by: Kathy | 11/02/2009 at 02:03 PM
My love and appreciation for your life and your gifts to us all. Endless thoughts and wishes, always, Beth/hugh/Darrell
Posted by: beth devereaux | 11/02/2009 at 06:21 PM
Dearest Sandra,
AS you now rest peacefully, please be assured that your legacy will always be appreciated! Your spirit is in our hearts!!!!
Always,
Cathy Van Winkle
Posted by: Cathy Van Winkle | 11/02/2009 at 06:26 PM
Dear Willem, my heart is heavy with sondra leaving us..she is such a trickster...leaving us on a full moon on all saints day!..She's truely the SAINT!!! She's at least free of her suffering body & can now play tricks on all of us....Please let us know if we can be of any help to you & your wonderful child...much love agyana & vineet.
Posted by: agyana & vineet davidson | 11/03/2009 at 02:31 AM
Nov. 3, 2009 Although I had been keeping up with Sandra's progress on a weekly basis all these months, I went back this morning and reread every entry you had written, Willem. When I finished reading, I was profoundly struck by the love, vigilance and passion that was in you to bring Sandra home again. For all the care of the hospital personnel and for all who supported you and Eunhae through this difficult journey, I am grateful. Hopefully the love and strength of the life you had together will continue to feed you and sustain you in the hours, days, and years to come. Love, Marilyn
Posted by: Marilyn Tackitt | 11/03/2009 at 09:12 AM