How to tell you.... Part Two

I don't know how to tell you this...

At five am, after 90 minutes of sleep I am listening to a complete stranger who has identified herself as the doctor assigned to my husband's comfort care and end of days tell me that when she went to check on him, he sat up in bed, was totally alert and oriented, gave an accurate case history and then informed her that he wanted her to do everything possible to give him “one more chance.” He used words and phrases known only to me so I knew what she was saying had to be real.

I realized she was as confused as I was. She told me she was stunned by their conversation. She excused herself from his room only to make sure she was in the right room. She called down to ER and had the doctor there reiterate the report they had previously given her. Because, in her words, this didn't seem possible. It seemed she was trying to convince herself as much as me. She explained in detail how she had verified Rich's ability to make decisions despite the papers I had signed and the account from ER.

“So what I need to know from you,” she said hesitantly, “is given his diagnosis, and everything you have in place, and what I've just told you....what do you want me to do?”

Without hesitation I told her “Do whatever he asks. Please do whatever he wants. I promise I will back you.”

She started back peddling on the lack of guarantees, and blah, blah blah. I did not have the desire or energy to listen. I got another couple of hours of sleep and headed back to the hospital. He was in PICU. He appeared exhausted, but now and then he was able to converse. Saturday was a blur for me. Further confirmation of why I have NEVER enjoyed roller coasters. Especially those powered by my own adrenalin.

They placed an NG tube. They placed a central line on the right side of his neck. His feet and legs began to swell. His hands were slightly puffy. He drifted in and out, more like he was just very sleepy rather than confused or disoriented. Family appeared. Staff wandered in and out and delivered information that boiled down to controlled confusion. He was septic, his kidneys had shut down, liver function was maybe 40 percent; his A-fib—controlled for over four years was now out of control and complicating everything.

Every time a doctor entered the room I was given information that made me feel I was about to agree to everything that Rich and I had agreed we didn't want him to suffer through. At every one of those moments of doubt, Rich would magically enter the conversation—smile at me through his fog and say, “hey, pupshun...” squeeze my hand and drift away again.

By 7:30 pm I was dead on my feet and didn't argue with my brother driving me home. The next morning I got a text from my son. “Rich moved to MICU. They're going to intubate.”

The difference between PICU and MICU is the difference between a punch to the gut and having your heart ripped out.

I got to MICU at 07:00. THE visiting HOUR was over. The hospital had not called to inform me of his move. I was desperate to see him. Too bad. I managed to sneak in because I know how to do that but his nurse caught me in 5 minutes and informed me I would have to leave “because the doctors will be rounding and they don't like family present.” I explained that I would sit quietly until they arrived and then slip away...I begged for just a few minutes. His nurse explained the rules, and when I attempted to offer a deal, she offered to call security. I was in tears and begging her, explaining his diagnosis and this might be the last time I would have with him, “Please don't take this from me...” and she said “Please don't make me call security.”
I got up off my knees with the little dignity I had left and whispered “bless you”.
I don't know how I managed that. I was totally exhausted from the effort of not slapping the Ba-jeezus out of her. I found my way to the MICU waiting room, thinking “this is a marathon, not a sprint, and I cannot afford to make any enemies”.

For the next four days I lived in MICU limbo—visiting hours 5 am to 6 am; noon to 1 pm; 4 pm to 6 pm; 8 pm to 9 pm. Think about that schedule. The long hours between the precious minutes of sitting bedside, during which time you have hit the lottery if a doctor walks in the room and speaks to you. Should you miss that small window of opportunity you are screwed because they will NOT come find you in the MICU waiting room to tell you ANYTHING. Leaving your cell phone number with desperate requests just annoys them.

About every third visiting window I got lucky and was blessed with the presence of a doctor. They told me what they were doing and I gushed gratitude. I got the menu of “If—Then Scenarios” without knowing who was ordering or who was cooking. I just had to keep swallowing.

All I could do was focus on Richard. Once in awhile he would have something to say. He seldom knew where he was. Usually he would claim he was in Orville. When the alarms were going crazy on his monitor he would ask why we were in the airport and couldn't we go home now? He always recognized me, and the “family” I would take in to see him. To medical staff he did not speak unless spoken to and it would be weeks before I learned why, but as ever he was always “please” and “thank you”, even if it was hard to understand the rest of what he said or asked.

With six IV's going non-stop, a feeding tube, a monitor that was almost constantly alarming and his face nearly covered by a re-breather mask, I was a bit disturbed by what captured my attention... Each time a doctor entered the room, came up to the side of the bed and introduced himself, Rich would reach up his right hand toward the doctor. Even if his eyes were closed and he could barely speak, the hand would go up, reaching. And the doctor would back away. And Rich would keep reaching for him until I took his hand. The third time I witnessed this I said politely, “he's trying to shake hands with you.” The doctor looked at me like I had lost my mind. (no shit, really?!?) I didn't bother again.

Only one doctor took Rich's hand immediately when it was offered and it was all I could do not to burst into tears of gratitude. He held Rich's hand the whole time he talked to us. Rich appeared totally “out of it” but when the doctor was done answering my questions, Rich nodded, said “thank you” and released his hand. Rich spoke of this experience weeks later, but his version in no way resembled anything that actually occurred.