WEDNESDAY . DAY 8 . ST JOHNS HOPKINS
Possibly some of you have wondered about the skimpy  blog entries for the past two days. Perhaps you suspected something was amiss. You were not wrong. Colleen's pacemaker procedure was successful. I wrote the truth about that. I simply didn't write the whole truth. There was a complication. With its outcome uncertain. If I were an objective journalist, posting minute-to-minute updates during a crisis would be imperative. But I happen to be the emotionally-involved sister of this story's protagonist and, additionally, as her co-blogger, know that you are subjectively involved too. There was no way I could blog as usual. But now that Colleen is on the other side of Monday and Tuesday's crisis, I'll give you a synopsis of what occurred.

For Colleen, general anesthesia is a high-risk proposition because it requires the insertion of a plastic breathing tube down into the entrance to the lungs. The other end of the breathing tube is connected to a ventilator machine that helps you breathe when asleep under anesthesia. 

If you have systemic scleroderma like Colleen, the passageway to the lungs is most likely tightened, but intubation, or putting the breathing tube in place, is only minimally difficult for anesthesiologists. They have their ways. Extubation, or extracting the breathing tube, on the other hand, is another matter entirely when scleroderma has rendered the lungs fibrotic. Healthy lungs spring back instantly when the breathing tube and ventilator are removed. Highly fibrotic lungs, like Colleen's, lack this speedy bounce-back. Removing the tube and ventilator requires the utmost care.

Got all that? It may help you better understand events that ensued on Monday.

Some days ago, I wrote about the highly experienced nurse anesthetist, Bonnie, visiting Colleen in her room to discuss her anesthesia options for the upcoming pacemaker procedure. On Monday afternoon, we saw Bonnie again in the cardiac holding room along with the lead anesthesiologist, Dr. Ramola Bhambhani, whom we liked equally and who went over the same options reflecting her thorough understanding of the anesthesia challenges for sclerodermic lungs. "We will keep you safe," she said. "We will do everything we can to avoid general anesthesia. General anesthesia is our last option." 

Cut to:
Cardiac Electro-Physiology Waiting Room, 5th floor, an hour or so after Colleen was wheeled into the procedure suite. Dr. Bhambhani, in a long surgical gown over scrubs, her mask draped around her neck, comes out to speak with me.  "I'm so sorry," she said. "We had to intubate your sister." She told me that the alternatives to general anesthesia were unacceptable to the surgeon. He needed Colleen lying completely flat on the table and also completely immobile. Colleen is only able to breathe with her upper body at an angle; without general anesthesia, there is also the likelihood she might move or cough during the procedure, which requires extremely delicate maneuvering of wires through veins, including one vein within the heart itself. Colleen was briefed on the situation as she lay prepped on the table and gave the go-ahead. (Later she would say, "No choice.")

Dr. Bhambhani apologized over and over. The plan was to take Colleen immediately to ICU on the 10th floor following the surgery. She would still be intubated and still on the ventilator. She told me that the surgeon estimated the procedure would finish around 7 pm; so there were three hours more to go.

Just minutes after speaking with Dr. Bhambhani my cell phone rang. It was Dr. Tottenham from ICU on the 10th Floor calling to tell me they were preparing for Colleen's arrival and to ask me for Colleen's Advance Directive wishes. 

From that point on, everything went Mach 10.

I told Dr. Tottenham that I knew Colleen wishes were not to be kept on life support. "What if her heart stops beating?" she asked. "Would she want to be resuscitated with paddles? Would she want someone to beat on her chest?" This question upped the terror quotient while sounding wildly insensitive, dumb, and unprofessional at the same time.

"I'll get back to you," I said and called Leslie in Ocean City, whom I knew was entrusted with Colleen's Advanced Directive. I had no choice but to call her, even though I knew it meant widening the outbreak of fear. Leslie picked up at home, hurriedly found the 6-page legal document,started reading it aloud to me, whereupon I said something like "just the highlights, please," whereupon Leslie said something like "I don't know the highlights."  Great, I think to myself.

We made a plan for her to scan the document even though she didn't know how to work her scanner. Then we made a plan to merge all six scanned documents into a single document. Then the document didn't come through in its entirety. And so on. This process took over an hour and included calls to Kim in Boston and help from Leslie's sons Robert and Kyle. Even after all that, the answer to Dr. Tottenham's problematic heart resuscitation question remained unanswered.

Dr. Tottenham told me that she'd spoken with Dr. Mathai who told her that he and Colleen had spoken about DNR (Do Not Resuscitate) many times, including no heart resuscitation. But, I asked her, what if resuscitating Colleen's heart didn't mean her ending up on life support? What if it merely restored her to where she'd been before? "That's the problem," she told me. "We wouldn't be able to be certain of that."

Seven o'clock came and went as I continued to sit in the waiting room, which by then had emptied out except for myself and an older gentleman whose wife had been in the OR for the past 12 hours. At 7:30 I checked the monitor for the upteenth time. Colleen was RED, which meant she was out of the procedure room. Time to move and move fast.

I sought the help of an attendant at a desk in the hallway. It took several calls to discover that  Colleen had already been whisked up to MICU, Medical ICU. "10 East," he said and gave me directions. I concluded that the surgeon must have forgotten Colleen had family on the premises. 

The receptionist at 10E told me that Colleen was being "settled in" her room and asked me to take a seat back out in the lobby. Twenty minutes later I walked back through the double doors to inquire again. Colleen was still being "settled in." I told the receptionist that no one had told me how the procedure itself had gone. She said she would let  Colleen's attending ICU doctor know about this--Dr. Tottenham, I presumed.

All I remember about the wait to be admitted to the inner sanctum of the ICU is sitting down near an African-American eleven-month-old boy who was surrounded by a bevy of doting aunties. I wondered what family member of theirs was also on the other side of those double-doors. I didn't ask. Nor did I tell them about Colleen. I simply drank in this little one's presence as balm to a mind blinded by this single overriding thought: if the breathing tube can't safely be removed, Colleen will be sentenced to a ventilator, and if Colleen is sentenced to a ventilator, that will be the end.

A half-hour may have passed in the lobby until I was summoned inside. Go down to the end of this hall and make a right, I was told. Your sister is in Room 58. There's no escort or anything. You walk down that hall on your own. I made the right turn and spotted a dark-haired young woman in a white coat and asked if she were Dr. Tottenham. She was. She told me she had some things she needed to speak with me about. I told her I wanted to see my sister first. I also told her that I hadn't been told how the procedure had gone. She said it had gone very well. Ah.

Room 58 was a corner room with a very large floor-to- ceiling sliding-glass door, typically bland hospital drapes pulled partway across. As I neared it, the room appeared noticeably dim, especially in contrast to the brightly lit hallway. Entering felt like crossing a threshold of an unknown kind. The atmosphere was subdued, intimate almost. Two or three hospital-garbed personnel busied about and spoke to each other in muted tones. An array of digital color monitors surrounded the one solitary hospital bed in the dimly-lit, unusually spacious room. From the doorway, the bed appeared smallish, oddly faraway, and more golden-hued than white-sheeted. That's where Colleen was...to be continued                    

. . . 

Sometime after midnight last night, Colleen was moved from ICU back to the 9th floor of the Meyer Building, into Room 956 this time. She's physically beaten up from all that's transpired since Monday, but on the mend. She's looking rosy-cheeked. She's breathing more easily. She's on the other side of a hellish ordeal. Dr. Mathai came by this morning. We talked about a number of things. He may discharge Colleen on Friday. Oh, to be back on the road again, in spite of how much I've enjoyed my daily trips to and from the hospital, passing block after block of attached red brick houses with front stoops, each front door proudly differing just enough from its neighbors'.