Please, know that I say the following to a very small minority of my readers (I am NOT speaking directly to anyone at Duke).
Unless you've ever been in my shoes, don't even bother trying to educate me about how things normally work in a hospital ICU (ESPECIALLY when I specifically said "and understandably so"), and don't even bother trying to "kindly" (or otherwise) suggest that I mind my own business when it come to my wife's or daughter's care. I am the caregiver, and although I have NEVER "told" a nurse how to do her job, I have and will always continue to advocate for what I consider to be the best care for my family.
I trust the Duke staff tremendously, but I also have enough experience here to know that Tricia's care ultimately rest on my shoulders (and I have been told the same by many of the Duke staff). You will never convince me (and for very good reason) that a nurse or doctor who has known about my wife for 1 hour knows more about what is best for my wife than I do. It is my right and my responsibility to speak up for her and insure that she receives the BEST care. The best care is almost always in line with what the nurses and doctors order and carry out...almost.
There are only 3 people in this world (beside Tricia) who know as much or more about my wife's medical journey with CF as I do.
None of them were in the ICU with me last night when I talked with the charge nurse about my concerns (have you ever had a wife with a double lung transplant?).
None of them were with me in 7800 on Monday night when the collapsed lung went misdiagnosed for 12 HOURS by an inexperienced doctor (have you ever had your dying wife placed in the care of an intern?).
None of them were with me when the LAST TEN pic lines were unsuccessfully placed at Tricia's bedside (have you ever wasted over 5 hours of your life watching people stick a medal wire up and down your wife's veins?).
None of them were with me when the Endocrine Team came a apologized to Tricia for not listening to her suggestions for her diabetes care after TWO MONTHS of erratic blood sugar levels (have you ever heard your wife tell you every day for 2 months, "they're doing it wrong"?).
Neither were you there.
I was there.
As a nurse, you should know that...the BEST nurses recognize that (and we have had lots of best nurses here at Duke, including during our experiences in the ICU's).
If you are or ever may be a primary caregiver to a family member or friend in the hospital, always know your rights as a caregiver and your patient's rights as a patient. Always speak up when something doesn't sound or feel right. Always listen to the patient when he or she in concerned. Always ask one more question. Always talk to the person who does know. Always trust your doctors and nurses if you don't know what else to do. Always be passionate about receiving the best care for your loved one.
I have already deleted one comment today from somebody trying to tell me to shut up, and I will be keeping an eye out for more.
I feel so much better now.