Just spoke to Mama and Daddy rested peacefully last night. She was also able to rest more than usual, probably b/c she is so tired. After all, there's really no comfortable way to sleep in a hospital, even for the patients!
Prior to this weekend we've been mostly pleased with the level of care that Daddy has received at Vidant Medical Center (formerly Pitt Memorial) but that is unfortunately beginning to change. This past weekend it seemed that there was very little communication between staff at shift changes and missing notations in the medical records; for example, the doctor explained to us that Daddy needs to be on the bi-pap machine any time he sleeps, naps included. He was not placed back on the mask during naps yesterday, even though Denise notified staff several times that he was beginning to act as he does when the co2 levels are rising. He was finally put back on it just after shift change yesterday evening, at her vehement insistence. She was told that the nurses (or perhaps the respiratory therapists) "did not want to run in and out every little while to put on and remove the mask" and asked if we "could just monitor him and let them know when he seems to be declining". I personally do not find this acceptable, particulary since we are trying to follow the doctor's orders for the sake of Daddy's health. I certainly expect the people who are paid to provide him with proper care to follow those instructions!
As of now, he has not had food or water since around 1p.m. on Sunday. A swallow test was ordered and seems to keep getting put off. This is very discouraging to him, and at one point he stated (and I paraphrase) that if the doctors and nurses were not going to do what they say then he may as well give up. Mama was told this morning that the swallow test would be performed sometime around lunch time today, after Denise was told it would be first thing this morning. We are beginning to lose trust in their ability to communicate and perform necessary tests and care on schedule. When Denise said this to them they basically told her that there had been miscommunication among the staff - this does not add to our confidence.
Unfortunately, we cannot help but feel that since Daddy made his wishes not to be placed on life support or be resuscitated in the event of heart failure known that the level of care has declined. He never said he didn't want the treatment he did choose carried out properly. We have encountered some fantastic nurses and respiratory therapists during his stay so far, and I commend them for doing their jobs with efficiency and compassion - but at the moment, we are overall unhappy with the past 48 hours.
As I was typing, Sheila called me to say that the bi-pap is back on as the co2 levels rose to 79. After awhile, they will retake the ABG and if possible take the mask off long enough to perform the swallow test.
I am not filled with confidence that he is receiving the best possible care at the moment.