Home

I used to call the homestead "Potential", now I call it "Heaven"

ROUNDING THIRD BASE TO HOME

Colleen's hospitals have an undeniable thing in common--they are reluctant to let her go. Time and again, just when she thinks she's out, "they pull me back in." Johns Hopkins, where she's practically got a time-share, invariably says, "One more day, Colleen, just one more day" or "Maybe tomorrow, Colleen, maybe tomorrow." Somers Point, her local hospital, kept her an extra night in early April. Inspira, the Vineland, New Jersey hospital where she just spent the past weekend, also kept Colleen for a second night. And now, the Rehabilitation Hospital of Vineland, is vacillating about whether to release Colleen tomorrow or Friday. The MD's get nervous. 

Hopkins doctors are simply working within their hospital's code to release no one until the patient is as strong as she can be. Hopkins will stop at nothing to ensure that. 

The other hospital doctors Colleen has encountered over time, however, drop their medical jaws when she appears on their watch. Not exactly the effect one wants to inspire in a physician on-call. In short, the exquisite and diabolical intricacy of Colleen's scleroderma blows them away. With each new non-Hopkins  doctor, Colleen must give him or her the lay of the land, so to speak. Inside, she might roll her eyes, but outwardly models patience as she educates them about her disease.

All of this is to say, again, that Colleen is on standby for the rehab's decision to release her either late tomorrow afternoon or early Friday. Stay tuned. She's been away from home for three weeks, ever since we left together for Baltimore on May 9.


Voici le maison de Colleen:

10 Village Drive

          
          Colleen's backyard
          deck, source of
          many happy hours

               

 Photographs by Leslie

                Birdfeeder, behind & to the left of
                of the white rattan chair, filled
                by Camille for Colleen's homecoming 

One More

Pat was here for a visit. The nurse arrives with the medicine in a little paper cup. They witness the patient taking their Meds. She chimes in, "Oh, let me go get your Meds." Okay, who are these for? Pat?

Have a laugh!

As many of you know I once prided myself on having a flat stomach. Well, I let that go awhile ago. In fact, in the recent past I have watched it swell in inches. This morning it was finally confirmed. One of the nurses whom I hadn't seen since my visit to the hospital said, "I've never seen a belly that big, you looked 5 months pregnant". "How do you think I feel? I've started thinking about names."

Reflections from a Hospital Bed

As the days passed in my hospital bed, I was able to see the light from the Baltimore skies show sunrises and sunsets in this old print you'd find in any hospital or doctor's office. This ain't no Picasso but it's a theme I treasure....two chairs. I have two others at home. One is two beach chairs, the other, adirondack chairs on a mountain lake by Sharon Reustle. I spent quite some time sitting in one rocker and visiting with various people, catching up, enjoying the outdoors. (Where else would I be with the state I was in?) Of course, with some I shared wine, others tea and my memory brought back sitting on Bunny Carnie's porch sipping on hot chocolate watching a lightening storm. That was New Castle, Pa and I was in the fifth grade. pondering..enjoying being outside. My dearest chum since second grade and I enjoyed a glass of wine, well, maybe two and giggled about our early days of mayhem. I was rock in' in that rocker for a damn week! Each person who visited me lifted my spirits. So, since I haven't figured out how to get out of the body to go to Paris, this journey with 2 rockers in a cheap poster was the next best thing. It renewed me to get myself home. On my deck, it's 2 rattan chairs under a big ole' oak. Looking forward ...

COMMUNIQUE WITH US AIRWAYS
As recompense for sitting on the tarmac for 1-1/2 hours past the 3-hour federal aviation regulation, during which time we were served a single plastic cup of water, I have requested in writing enough dividend air miles--4,000 to be exact--to add up to another round-trip US Airways domestic ticket. Nothing ventured...

....

Mercifully, our southern California beaches look nothing like the south Jersey beaches on Memorial Day weekend. I have a tall but narrow strip of window in my living room that gives me my own personal view of the beach. The sand is barely populated on this sunny holiday afternoon. Just a smattering of people, towels, umbrellas, and beach chairs down near the water. This in spite of 16.5 million residents in the Greater Los Angeles area.

REPORTING FROM CALIFORNIA

As you know, Colleen has taken up temporary residence in a small hospital, Inspira Medical Center, located only a few hundred yards down the same road as the rehab center she entered exactly a week ago today. Johns Hopkins and Baltimore feel so much further away than that now.

Col is staying a second night at the hospital tonight. She says it's quiet and she seems in no hurry to leave. I think she's feeling a measure of peace there. Kind of makes me want to check-in myself.

The issue that brought her to yet another hospital stay is water retention. Always water retention--since last December, that is. Sounds so benign, doesn't it? What's the big deal about a little extra fluid? But it can be quite a big deal. At minimum, it makes breathing even harder and delivering oxygenated blood throughout the body becomes even harder as well. 

Presumably, the hospital will release Col back to  rehab tomorrow. As her advocate, two days ago I pushed the decision-makers at the rehab facility until they agreed to keep Colleen for her fully entitled two weeks. Once her case manager, in particular, stopped pushing back, things began to right themselves. A few hours later, Col's supervising doctor returned my call and said he couldn't agree more that Colleen would benefit from staying longer to receive more PT.(So why did it require 3 separate phone calls to the doctor, the director of nursing, and the case manager?)

.....

The ten tall, vigorous palm trees outside my large, open, third-story living room windows sway from today's onshore breezes, their thick fronds rustling lightly but audibly enough that I can tune in to listen from my spot on the couch. These palms and I have born witness to each other as the years have ticked by, they watching over me as I've grown older, me watching over them as they've grown ever closer to the sky. Lured by whatever was west of the Rockies, I left the east coast when I was twenty. I'd never been further west than Youngstown, Ohio; never been as far west as the Mississippi, let alone on the other side of it. Had to cross the Mississippi. Had to cross the Rockies. Once across, had to stay.

Where Am I?

After the hoopla yesterday with my days in rehab, I settled in for more days and agreed to move to a new room for the benefit of another patient. I got up, showered and had a nice am visit with Camille. I knew the fluid was building again but I was trying to keep the anxiety at bay. Toni (excellent PT) came to get me for my 1 and 1/2 hours. As soon as I started my walk, within 5 steps...WHAM. Not long after, the EMT'S deliver me to the emergency room. My first question...Where am I? You can imagine how I was phrasing the question in my head. After a couple of repeats, I got it...Inspira

Coincidentally, Pat was on her way for a visit. So, reassuring to nice her face peeking around the curtain. Of course, we're befuddled about the strange name and agreed we could let our imaginations run wild. Then, a nurse informed us, "It stands for inspiration". How chic, right here in the boonies.

So, hopefully, this is for overbite then back to rehab. And, the digs here are quite nice and everyone has been lovely. What an inspiration.

re "NOT"
Negatives are sometimes positives. Colleen having acute rehabilitation therapy for the maximum time allotted by Medicare--14 days or until May 30--is a positive circumstance. Another week of physical therapy will see Colleen home stronger and healthier. More acute PT at home after she returns would be ideal, but it appears Medicare doesn't see the value in that. Nonetheless, we accept the 14 days with gratitude.

Yours from California.

NOT

Change of plans, will be discharged 5/30

HOME
Exactly 24 hours after I left 10 Village Drive in Somers Point, the airport shuttle dropped me off at 2221 Ocean Drive in Santa Monica. Couldn't I have made it to Mumbai by then? Or Tanzania? or Australia? 

But 24 hours or no, it's so sweet to be home. My beloved Finn--my gorgeous, blue-eyed cat Finlay--gave me the welcome I'd been longing for as I got closer to California. The longest cuddle.  

I can't remember ever being away this long before, not even a few years ago when I went to Europe.

The ocean and sky here are perfection today.

Grateful.

Going home

Surprise but no surprise...sending me home sat. Oh boy!

LAX . US AIRWAYS GATE 24
Time bends sometimes. Like it did in the past four weeks. Like it will when my plane sets down on southern California soil tonight at a quarter past midnight PST, a quarter past 3 AM EST. By the time the airport shuttle drops me off in front of my apartment building in Santa Monica, it will be 1 AM PST, 4 AM EST. That's if I'm lucky and I'm the only passenger in the shuttle van. If I'm even luckier, the gibbous moon will be riding high and bright in the night sky, illuminating the incoming waves on my beach.

PHOENIX . 2:30 AM PST . 5:30 AM EST
What did I write 13 hours ago about time bending? Because of a "storm over Pottstown," the pilot announced to the passengers on the full flight to Phoenix, the first leg of my return ticket to LA, we sat on the PHL tarmac for 4-1/2 hours. Storm over Pottstown? I never heard of Pottstown. Two gentlemen with whom I shared Row 10 told me that it's a PA town. Only because of their sense of humor, the laughs we had, did I survive the nightmare of tarmac hell, the
tight quarters, the interminable waiting, the single cup of water given.

We touched down in Phoenix a half hour ago. The best US Airways here could offer me was a seat on a 10:15 morning flight to LAX, 8 whole hours from now. I appealed to the Customer Service desk and was given a standby ticket for the first flight out of here--at 7:45. Show up at 6:45, the rep told me, and I might have a chance. My checked bag to LA might have a chance too. 

Right now, the gate where I'm sitting is empty except for two men stretched out asleep. I may be doing the same in a minute.



PHOENIX . 6:30 AM PST . 9:30 AM EST
Woke up only once during my three-hour-night's sleep, my bed an empty row of attached seats, as long as my six-foot couch at home. Woke up to an already bustling airport, cafes open, travellers having an early bite. I felt like I was in a film that had been freeze-framed when I lay my head down and back in full motion when I opened my eyes. A giddy sensation. But then, since stopping on the Philly tarmac, the entire time-bent night has been a giddy delirium.


PHX . 7:00 AM PST . 10:00 AM EST
A pair of US Airways staff have arrived at Gate A6's counter. All they can tell me is that my name is on the standby list. They are not permitted to tell me where I stand in the queue. The male sourpuss I spoke with must have been the unpopular kid in school, now morphed into a beleaguered, early-morning airport shift worker, who can no longer bear questions from the anxious standby traveller about whether she's number one on the list. 

TUESDAY 7 PM . 10 VILLAGE DRIVE
Drove through the woods to see Colleen again this afternoon, our mother Suzanne riding with me again too. Colleen's doing well, the occupational therapists and physical therapists are cutting no corners, for which she is grateful, but Col's is definitely counting the days until she can go home. We were told today that Medicare will pronounce on Thursday how many acute rehab days Colleen will be allowed.

Today marks four weeks being here on the East coast.  Until someone corrected me yesterday, I'd thought it had only been three. I fly out of Philadelphia early evening tomorrow. I should land in Los Angeles around midnight California time. I'm leaving in the nick of time because the unbearable heaviness of Jersey humidity has arrived, getting a jumpstart on summer, I presume. It lay thick in the air today. But right now, I feel it easing up some. The trees are so green. Colleen's oak, just budding when I arrived in late April, is fully leaved now. Must remember to fill the bird feeder and fountain before I leave.

PART VII:  COLLEEN'S ICU INTERLUDE
I didn't see Dr. Tottenham again. Her shift in MICU, I knew, ended at 7 AM. I'm not sure whether Colleen had even met her. I'll have to ask if she remembers. Three days later I caught a glimpse of Dr. Tottenham on the 9th Floor in her white coat, not a shiny dark hair out of place, no expression on her pretty young face, glancing neither left nor right as she passed by, her glacial exterior intact. If she saw me too, she gave no indication.

Beginning at daybreak on Tuesday morning, other doctors, obviously pulmonary, began coming in and out of Colleen's room to check on her. Each time they told her, "We're going to take the tube out today."

I started reading another magazine article to Colleen to pass the time. Although not as frequently as the night before, she continued to ask for pain medication for her hurting throat. The nurses complied, but not as liberally as the night before. "In order to extubate, we need you and your lungs as awake as possible," they said.

Having gotten a few hours sleep at their hotel, Leslie and Pat returned around 9:00. Colleen's daughter Chelsea and son Ben drove down from New Jersey, arriving early afternoon, around 1:00. Now there were five us standing by with Colleen in expectation of the tube coming out. We waited together, one anxious hour after another, talking, not talking, reading aloud Colleen's occasional notes. Her initial scrawls were becoming more legible.

Would the doctors be successful in removing it? Would they need to re-intubate? The prospect of reintubation was unthinkable to us. It had not been presented to Colleen, at all, as a possibility. She deserved full protection from the fear that prospect would have induced.

Leslie and Pat had persuaded me to pop back to the hotel for a hot shower and change of clothes, Leslie driving me there after a mildly frenzied search to find her car in the Hopkins parking garage. It may have been around 2 PM by then. 

I had been inside the hotel only minutes, standing at the front desk getting the key card to my room re-charged, when my cell rang. Pat was calling to say they were going to remove the breathing tube within the hour.

Immediately, I phone Leslie to come back to pick me up. Even though only five minutes or thereabouts had gone by since dropping me off, she'd driven straight down Lombard Street, going she knew not where to pass the time. So it took her a while to navigate back to the hotel, which was located within a maze of one-way streets.

I stood on the corner of Lombard and Calvert, waiting, waiting. How far could she have gone, I worried and wondered. I stare at each and every passing gold-hued SUV thinking it's her. And then, bam, she's stopped directly in front of me, in a silver-hued SUV, vigorously trying to get my attention. We speed off back to Hopkins, two miles away.

Leslie generously drops me off back at the entrance to the parking garage. She'll park and be right behind me, she says. I fast-walk across the street to the Main Entrance of the hospital, take the elevator up to the 10th floor, take an immediate left to the double-doors of 10E, take another immediately left and then a right to Colleen's MICU room. Pat, Ben, and Chelsea are standing outside Colleen's door. They tell me that Colleen asked for everyone to leave the room during the extubation except for the doctors and nurses, who now surrounded her bedside. I tried getting a glimpse of Colleen through the doorway but all the working bodies blocked a view.

How long we waited is uncertain. A half-hour perhaps? Forty-five minutes? Was it like waiting for a baby to be born? Waiting for that first alive cry?

And then it was over. We were allowed in. Colleen smiled at us.

By 4:30 or so, Pat and Leslie, Chelsea and Ben, had left the hospital to drive back to New Jersey. It was just me and Colleen again, sharing the quiet of enormous relief, of being on the other side of danger.

Colleen began urging me to go back to the hotel, take a hot shower, and get some sleep. Eventually, around 7:00, still light outside, I did.

In the morning I woke up to an email from her. Sometime after midnight, she'd been transferred out of MICU back to a room on the 9th Floor, where she'd been prior to the procedure three days before. It felt like three weeks.

THE END

PART VI: COLLEEN'S ICU INTERLUDE
The armless chair next to Col's bedside had a rocking feature of sorts so it was mildly comfortable. Col continued writing me short notes intermittently, gesturing with her right hand for a pen. Sometimes, in spite of the tube, the note would be accompanied with a smile from Colleen. At one point she wrote, "You had a meltdown."  Immediately I started denying it. "I had a meltdown?" I'm thinking, how did she know? Did she hear me all the way in here? So then I offered a weak, "Well..." and let it trail off.

From time to time, I asked Colleen if she was in pain. Mostly she indicated no, but a number of times pointed to her throat. When the nurse then inquired if she wanted more pain medication, Colleen would indicate yes.  

From time to time, I also checked the round clock on the wall, the kind with the second-hand. Leslie and Pat would make it to Baltimore no earlier than 1 AM. In the interim, Dr. Tottenham finally came into the room to tell me that Colleen's blood pressure was doing well. Out of Col's earshot I asked, "Does that mean no new lines have to be put in?" No new lines, she confirmed. We'll let her rest (this is rest?) overnight, she said, and try to extubate in the morning. I thanked her, and even touched her clinical hand. Fear eased its grip another micrometer.

It had taken an hour or so after first seeing Colleen intubated to notice the ventilator equipment located to the right of her bed, and its unmistakable sound. The pump itself looks toy-like, made out of blue and white accordioned plastic, and smaller and less robust than you'd expect for performing such a life-and-death job. From my bedside chair, the ventilator pump, housed in clear plastic, stood directly in my line of sight. I watched it go up and down in an exact, digitally programmed, unvarying rhythm. A relentless mechanical plodder capable of saving lives, of mimicking the expansion and contraction of real lungs. I watched Colleen's chest rise and fall in lockstep. The sound of a ventilator mimics nothing but itself, however, particularly its downward, percussive thunk. As the clock ticked on into the late night, and as I settled in for whatever was to come, the ventilator pump became the dominant, sometimes the only, sound-print in the room.

Sometime after midnight it must have been, one of Colleen's nurses quietly told me that Colleen was  breathing on her own. She delivered the news so softly, it almost didn't register. Instinctively, I looked at Colleen. The breathing tube hadn't gone anywhere. It remained exactly as it was. Breathing on her own? Several perplexed seconds passed before I understood. The tube was still in place, but the ventilator was no longer pumping. Colleen lungs had taken over. She was breathing on her own. Fear's grip eased a millimeter or two.

I told Colleen the good news. 

A little while later, I asked her, "Would you like me to read to you?" She and I were alone in the room then, the lights still soothingly dim. She nodded yes, and then hand-gestured her wish for the pen. "No drama," she wrote.

I had purloined a copy of Vanity Fair magazine from one of the many waiting rooms I'd waited in over the past few days. I asked Col if she'd like me to read a piece about Audrey Hepburn written by her son Luca. She nodded yes. I was mid-sentence, Colleen actively listening to me reading, when Leslie and Pat came quietly into the room. It must have been 1 AM by then. Colleen brightened at seeing them. A few hours earlier, encouraged by Colleen's increasing alertness, I'd called Leslie and Pat en route in the car to let them know things seemed to be trending upward. Now  got to tell them that Colleen was breathing on her own. It was a warm reunion.

The three of us stood around the bed, sat around the bed, took turns reading Colleen's hand-written missives, and told stories. Colleen used her fingers to indicate "LOL" in response to one of them, which made all of us laugh, as Colleen smiled beneath the obnoxious tubing.

Around 3 or 4 AM, Leslie and Pat left for their hotel room--they'd reserved a double in the same hotel as me. I stayed on and kept vigil for the rest of the night, dozing for minutes at a time. I had the sense that Colleen was doing the same. By this time, the nurse had removed Colleen's hand restraints. I marveled that Colleen was able to lay still, to refrain from trying to rip out the breathing tube herself.

When dawn's first light filtered through the windows, I couldn't believe we'd made it through the night.

MONDAY MAY 20 . 10 VILLAGE DRIVE
My sister Camille and I drove the back roads to see Colleen this afternoon, her second full day at the rehab hospital, tonight her third night. She's definitely feeling more comfortable being there. I think tomorrow the rehab center will present its team assessment of Colleen to Medicare. After reviewing this information, Medicare will proclaim how many days of acute rehab for Colleen it will pay for. The maximum coverage is 14 days. 

PART V: COLLEEN'S ICU INTERLUDE
Immediately after inking my approvals, I called Leslie. "I need you to come," I said. I need you here   plus, if they can't remove the tube, someone else needs to be here with her too."

"I'll leave right away," she said. And she did, picking up Colleen's close friend Pat Larkin, who lives nearby, to make the trip with her down to Baltimore.  

Dr. Mathai called. He said he'd wanted to see Colleen after the procedure but, because it didn't finish until after 7:00, he'd had to go home to babysit his three boys. He listened to my distress. He listened to my anger at our not having been told upfront, even days before the procedure, that general anesthesia was Colleen's only option. She may have decided against the surgery if she'd known, I told him. And now she's in danger of extubation failing and, since her wishes are not to be kept alive on a ventilator, she may die. He listened to all of it. I can't remember all that he said but it helped. And he would see her in the morning.

It was now around 10:00 PM on Monday night. Seventeen hours of unknowing remained.

After speaking with Dr. Mathai, I went back to Colleen's bedside and pretty much stayed there until 7 PM Tuesday night. Her eyes continued to be closed. I told her that I'd spoken with Dr. Mathai and relayed to her the message that he would come by in the morning to see her. 

The new lines had yet to be put in. But what about the dopamine? Colleen's dangerously low blood pressure?

Dr. Tottenham came in and said they were encouraged. That Colleen was responding to the single dosage of dopamine she'd been given, well over an hour ago now. Having to do something more invasive might not be necessary after all. But it was still wait-and-see.

Not long afterward, Colleen opened her eyes fully. She looked more alert. I was encouraged. Not long after that she tried to speak, which was impossible. She hen tried communicating with her hands, which were loosely tied down so she wouldn't intentionally or unintentionally tug at the breathing tube. A nurse and tried to guess what she was trying to tell us. Her frustration visibly mounted. The nurse finally guessed it right--Colleen's hands were cold. Scleroderma gave Raynaud's disease to Colleen two decades ago, which causes her hands to turn blue and to feel extremely cold. Her hands were blue now and obviously painfully cold. The nurse quickly fitted a pair of large down mittens over Col's hands. Colleen looked relieved. The nurse asked her if she'd also like additional warmers inside the gloves. Colleen nodded yes.

Not long afterward, realizing that as hard as we were trying, we weren't going to be able to read her mind, Colleen made a writing gesture with her hand. The nurse scurried for pen and paper. I put the pen in her right hand and propped up a blank piece of paper on a piece of cardboard the nurse had also scavenged.

Colleen scrawled, "What happened? Where am I?"

And so, my eyes looking into hers, I told her everything. That she was now in the ICU and why, that they'd had to use general anesthesia after all and had put in a breathing tube. I soft-pedaled in one area only. I told her that they were going to take the breathing tube out in the morning.  Withheld the doubts about whether they would try to take it out in the morning, about whether they could successfully take it out at all. This lack of full disclosure would have been deemed a "sin of omission" when I was growing up Catholic. To me, in this instance, it was none other than the saintly thing to do. To bring to my sister as much peace as possible as she lay  utterly helpless, unable to speak, and in full knowledge of her hazardous state.

She lay still, taking in what I'd said. She then began to write again. "Is the worst over?" Four words that took my breath away in their poignancy--please say "yes"--and their bravery--but tell me the truth. She looked directly at me and waited for my answer.

"Yes, Colleen, I believe the worst is over. Yes." 

SUNDAY PM . 10 VILLAGE DRIVE
My mother and I drove through light rain to Vineland to see Colleen today. By the time we arrived around noon she had had her first meeting with an MD whom she liked and felt understands her medical conditions. Colleen also had had her first "assessment" meeting with an occupational therapist. It was a day of first meetings. While we were there, her case manager Suzanne, the same name as our mother, came into Colleen's room to introduce herself, talk about goals, and brief Colleen on what to expect over the next ten to fourteen days. We left as the first physical therapy assessment began. The gym looks terrific. As does Colleen.

It's going on 5:00. I've crawled into bed under a down comforter. Only thing missing here is Colleen.

SUNDAY AM . 10 VILLAGE DRIVE
I just spoke with Colleen. She's continuing to adjust to her new environment and new carers, but tells me she's "okay" and was able to sleep last night. Her first occupational therapy session and physical therapy session begin today! She is happy about this -- that's why she's there. No time to waste.   No body in idle.

As for me, last night I slept ten hours straight. Time to get up, put my grossly dirty clothes in Colleen's thoroughly modern washer, and then present my somewhat grossly dirty, aching body to a hot shower from Colleen's best-in-the-world showerhead.

9:15 PM . BACK IN THE GARDEN STATE
Colleen in settled into her room at an acute PT rehab center in Vineland, thirty-five miles inland from the Shore. We checked into the center around 4:30 this afternoon, the interstate drive from Baltimore uneventful but smooth-going. Being finally discharged from the hospital today brought a feeling of relief, but Colleen not being able to come directly back to her own home didn't feel so good. I'm already in bed in my room on Village Drive, but it's not the same without Colleen being here. And I know her new non-Hopkins surroundings aren't feeling remotely cozy to her on this her first night. Nothing and no one is familiar. Fortunately, although she's in a double room, she's by herself at the moment, assigned to the bed by the window. From Vineland I caravaned down wooded backroads to the Shore behind Camille, who'd come to meet us at the rehab center. Saw two lithe deer dash to safety across our path.

12:15 PM . DEPARTING HOPKINS WITHIN MINUTES 
At 10:00 AM there was a heart glitch that might have meant a problem, a problem that might have kept us here. After an hour and a half of uncertainty, Col was given the green light to go. All IVs have now been removed. All extraneous cords, except for Colleen's oxygen cannula, have also been removed! At this very moment, Colleen has on street clothes. We're only waiting for hospital "transport" now to wheel Colleen down to the Main Entrance of the hospital.

PART IV: COLLEEN'S ICU INTERLUDE
After sending off the email to Mathai, Dr. Tottenham and I sat in a windowless break room or conference room just yards away from Colleen's room. She took me back through all the risks again of the two lines she felt were likely to be needed. I signed off. Her demeanor remained detached and clinical, with an I'm-just-doing-my-job-ma'am manner. Before finally initialing the documents, I asked her if she was going to be able to remove the breathing tube. "Your sister is very, very sick. I can't give you any guarantee," she said.

"Have you removed breathing tubes before?" I asked her point-blank.

"Yes."

"Are the nurses and techs in Colleen's room experienced in removing breathing tubes?"

"Yes."

"Put in the other lines if you believe they are necessary. I ask only one thing. Do not add one iota of physical or mental suffering to my sister. She's suffered enough," I said through sobs. The doctor's eyes teared up, which surprised me.

She continued, "I will make sure to inform your sister of the risks before doing anything."

"No," I said. "I've just taken on the responsibility of the risks. I don't want her to hear them. If the new lines need to be inserted, I also don't want her to see them. I don't want her frightened any more than she already is. If she looks inquiring, please tell her you're merely putting in another IV."

The doctor agreed to that.

SATURDAY 8:30 AM . HOPKINS REFLECTIONS
For the past ten days, every day, I've walked the long hospital halls here when arriving in the morning, leaving at day's end, heading to the cafeteria or Balducci's Market or Salad Sensations. As the days wore on, fragments of this long forgotten phrase kept coming to mind: "There are eight million stories in the naked city," a line that ended every weekly episode of a major New York City cop drama from fifty years ago, a line that has run through my head like a refrain since I've been here. Because you can't help but feel the thousands upon thousands of human stories recorded in the venerable halls and walls of Hopkins. You can almost hear them being told.

....

Sampling of names of those who've been taking care of Colleen here: Cynquetta, Towanda, Cornelius Red Deer, Mohammed, Quetta, and nurse Cara from time to time took to calling Colleen "Lovington." 

....

PART III: COLLEEN'S ICU INTERLUDE
Before leaving Col's ICU bedside, I spoke again to the nurse standing opposite me. "Is my sister sufficiently sedated to protect her from feeling extreme distress when she becomes fully conscious of the breathing tube?" 

"Oh, yeah, you mean if she gets crazy?" she said with a jokey tone.

I heard myself forcefully saying back to her, "Do not use the word 'crazy' about or around my sister. Do not. And this is not funny." 

I left to speak to Colleen's ICU doctor, the same Dr. Tottenham, who had called me to ask about Colleen's DNR wishes. She had found out for me that the pacemaker procedure had gone well. I registered the good news dispassionately. The doctor proceeded directly to asking for my approvals on treatments that might be necessary to perform on Colleen within the next twenty minutes. Her blood pressure had plummeted to dangerously low levels. Dopamine had been administered immediately to bring them back up but, the doctor explained, dopamine is dangerous in itself at higher or prolonged dosages. If Colleen's blood pressure fails to return to normal in the next twenty minutes, drugs other than dopamine would need to be given. And administering these alternative drugs would require putting in a "central line," probably on the right side of Colleen's neck. 

At this point, I'm reeling. Nineteen minutes to go? Eighteen?

"I don't know what a central line is," I tell her. "It sounds big."

She used her hands to illustrate eight inches. "It will allow us to administer multiple medications," she said. "And we most likely will also have to put in an arterial line, but that can be inserted into the groin area."

"I need to contact Colleen's doctor before I sign anything," I said. "By the way, I am not comfortable with one of the nurses taking care of my sister. Her choice of words within earshot of my sister was highly insensitive. I do not want her in the same room with my sister. I do not want anyone near her who could hurt her in any way." (The nurse was removed.)

I dashed off the following email to Dr. Mathai, whom I knew must have gone home from the hospital by now:

       
       8:53 PM, Monday, May 13, 2013
       SUBJECT: Need You
       Please call me. Colleen is in ICU, as
       you probably know. On a ventilator.
       The ICU MD wants to do all kinds of
       things with all kinds of risks.
       Mignon 310-889-8583   

SATURDAY . DAY 11 . COL'S ROOM
I just survived a night in the hospital quasi-sleeping in a chair. Colleen has just survived 10 hospital nights quasi-sleeping in a series of 3 different beds during this particular Johns Hopkins admission.
It's now 7:30 AM.  I estimate we both awoke from our respective quasi-sleeps at 6:00 AM. I can't be sure what exactly we've been doing for the past hour and a half but it did include early morning groans and such.

A doctor just came in to confirm Colleen's 11:00 AM discharge. We're too punchy from yesterday to be excited. I imagine, though, that we're both going to be feeling quite good once we're actually in the car with the wheels rolling.

MIDDLE-NIGHT . COL'S ROOM
2 AM. Nurse Liz just came in to start a one-hour magnesium IV drip for Col. Intravenous magnesium burns at the IV port site as well as the length of the arm, just like intravenous potassium which Colleen has gotten multiple times since being here. Her hands, wrists, and inner elbows are thoroughly black and blue from all the IVs and blood sticks. I hope she can fall back to sleep. It's been surprisingly quiet, only two intercom blasts so far.

....

A word on Colleen's pulmonologist, Dr. Stephen Mathai, whose name you've encountered many times here. Months back I posted his official Hopkins photograph in which he looks like a 15-year-old boy, smallish, and wearing an outdated bulky tie and outdated hairstyle. Having met him on this trip, I can tell you that his old photograph hardly resembles the mature man he is now. I scoured the internet for a more recent photo and found only the one below, which is better but still fails to reflect the tall, vibrant, handsome, au courant man that he is.

 

    Old Photo                        Later  

I met his assistant Traci, an RN, today who told Colleen and I that he is the "fashion plate of the department," that no one other than Mathai could pull off wearing bright green or even bright orange pants. His socks, when he's wearing socks, are also far from ordinary, anything but dull brown or black. Traci confirmed that Mathai (pronounced Ma-tai') is an Indian surname. Dr. Mathai's father is Indian, his mother American. She told us, when I couldn't help asking, that his wife, who also works at Hopkins, is quite beautiful, "a catch" is how she put it. And his three sons are also gorgeous.

....

And now to try to fall back to sleep. My bed is a very good reclining chair, yes, but a chair nonetheless. It doesn't allow sleeping comfortably on your side, and certainly no turning over onto your stomach.

FRIDAY 10 PM . OVERNIGHT IN ROOM 956
Okay, so it turned out not to be our last day here. As a matter of fact, it's not only not our last day here, but guess where I'm sleeping tonight. St Johns Hopkins Hotel, Room 956, in the reclining chair positioned right next to Colleen reclining bed. In fact, we are wearing matching mint-green cotton gowns, except I'm tying mine in the front and Colleen ties hers in the back. I've elected to don hospital bottoms as well; Colleen prefers not. 

As noon struck today without any sign that Colleen was being discharged, we both fell into a funk. The social worker who arranges transfers to physical therapy rehabs finally came by and admitted that she had only begun today seeking a facility for Colleen. We'd thought yesterday. She came back a while later to report that Colleen's first choice near Somers Point didn't feel medically confident enough to manage Colleen because of her oxygen needs. By this time, it's closing in on two o'clock. She proferred two others, another one not too distant from Somers Point and the other Hopkins own acute PT center on an adjoining campus. No matter what, it looked likely we'd be spending another weekend in Baltimore. These transfers involve paperwork and take time.

How could we survive another lost weekend here? Plus, I'd checked out of my hotel this morning and, because of the Preakness Stakes running at Pimlico here tomorrow, there are no rooms available anywhere in Baltimore tonight and through the weekend. My only option was to sleep in the hospital for the next three nights, which felt like the dimmest of prospects.

At 3:45, the second New Jersey prospect called Colleen. She calmly answered the rehab liaison's many questions and ultimately was given the green light to check in tomorrow. Colleen's face lit up at the news. We were leaving after all. And she'd been admitted to rehab. Suddenly, sleeping overnight in the hospital seemed not so bad. In fact, it's turned out to be rather fun. Colleen's a few yards away reading a novel she just started called "The Magician's Assistant" by Ann Patchett. I'm propped up in this comfortable but temperamental recliner writing. So far no blaring intercom.

The plan: Colleen is supposed to be discharged at 11 o'clock tomorrow morning. I will pick up our car that's been gathering dust for the past ten days in the Hopkins parking garage, drive back to my hotel to pick up the bags I left behind with the valet, and then swing back to the main hospital to pick up Colleen. Up I-95 we will go, go, go.

Our eyes are at half-mast. Petite Nurse Liz of the long blond hair, our favorite, will soon bring in Col's last meds of the day. Voices from the hall are audible but blessedly muted. The plastic water tank attached to Colleen's oxygen sounds like a babbling brook, truly. I like this.



 

FRIDAY . DAY 10 . MAYBE LAST DAY
7:15 AM. Unlike the majority of American hospitals who kick you out as soon as they can, even before you're medically ready, Johns Hopkins does the opposite, not releasing you until you can fly again, or fly as best you can. Thinking about this upon awakening this morning, the restlessness to bolt out of here is eased a bit.

9:00 AM. Two docs, Mathai colleagues, just came by to see Colleen, remarked on her improvement and related that the CAT scan done earlier in her stay showed nothing new of concern.

Yesterday, more than one member of Colleen's Hopkins team recommended strongly that upon her discharge she transfer directly to an acute physical therapy rehab center to assist her in regaining her strength following the surgery, the ICU experience, and her ten days in a hospital bed. It took a few hours for Colleen to accept and see the wisdom in this idea. She's fully on board now. We're just waiting to hear whether the rehab center she's chosen, reputed to be the best at the Jersey shore, has a bed available for her. The lack of an available bed could delay Colleen's discharge. This morning's docs are all too ready to keep her here over the weekend to work with the PT lab downstairs.

And so again we wait. "Colleen, shall I try to find out what's happening?"  "Let's give them some more time," she says.

wait: to remain stationary in readiness or expectation, to look forward expectantly, to be on hold, the side effects of which are frayed nerves, glassy eyes, melting brain cells, torn cuticles, hopelessness, and failure to thrive

THURSDAY AFTERNOON . COL'S ROOM 956 
At this very moment, Colleen is working with an occupational therapist whose helping her learn how to manuever over the coming days and weeks, particularly with respect to her two surgical incisions. Earlier, the physical therapist was here too. 

I succeeded in finding a doctor who immediately gave the go-ahead for Colleen to eat normally again. So off I went in search of a milkshake off-campus, walking two blocks to Northeast Market, an aggregation of stalls under a single roof, stalls selling things like "maws," "chitlins," "pig's feet," fried chicken, and fresh fish. I found smoothies for sale but no milkshakes, which meant bringing nothing but disappointment back to Colleen. Her second choice was a plain donut. I couldn't score a donut of any kind either. She took the bad news in stride though. We counted up the days since she'd eaten anything solid. She'd had nothing since last Sunday night when she began fasting for Monday's procedure. But do I want to drive myself insane questioning the doctors?  No, not on this one. "Ours not to question why, ours but to do or die, into the valley of death rode the six hundred." Courtesy of Alfred Lord Tennyson

We've entered the doldrums of late afternoon, going on 4:30. Are we checking out of Baltimore tomorrow?


10 PM . BACK AT HOTEL
Before leaving Hopkins at 8:00 this evening, sunset colors still evident in the sky, Colleen and I each ordered a mini-cup of Haagen-Daaz ice cream off the hospital menu, the only size on offer. By the time I said goodnight, Col was tucked into a freshly made bed. We now end the day asking the same question we started it with: Will Colleen be released tomorrow?

PS: Colleen's cell phone charger went missing during the transfer of her belongings from her first room in Meyer to her room in the ICU. Her phone is now dead, which means we have no easy way to contact each other once I leave the hospital at night. Don't like this state of affairs. One more reason to go home.

THURSDAY AM . DAY 9 . BALTIMORE
I'm here in Room 956 with Colleen, who was awake and playing "Words With Friends" on her iPad when I walked in around 8:30. Slowing down, I've started taking the 8 rather than 7 o'clock morning hospital shuttle. Colleen was allowed only thin liquids yesterday, i.e., no milkshakes or ice cream, so we're waiting to hear today's ruling. She's hungry. We also hope that this is her final full day at Hopkins.

10 AM 
We just heard: thin liquids it is, again. My thought is this: today's new food orders just haven't made it onto the hospital-wide computer yet.


Part II: Colleen's ICU interlude 
I've tried to describe verbally to my sisters the emotional, existential jolt inside me upon seeing Colleen lying in the ICU hospital bed, eyes closed, intubated and on a ventilator. I doubt I'll be any more successful in attempting to describe the ineffable in writing. (In anticipation of our sister Leslie asking me the meaning of "ineffable," I give its definition here: "in.ef.fa.ble, incapable of being expressed in words."}

By this time on Monday night, it was dark outside and must have been around 8:30. I had last seen Colleen 6-1/2 hours earlier as she was being wheeled on a rolling bed into the procedure room. Any surgery has its risks. Yet I had no sense that Colleen was heading into harm's way. She smiled her Colleen smile at me and I smiled back before settling into the waiting room for the duration.

Now I'm standing at Colleen's ICU bedside, the breathing tube Colleen has always dreaded thrust deep into her throat, rudely trailing from her mouth into two much wider tubes, one white, one blue, that connect to the ventilator machine, which is now doing Colleen's breathing for her instead of Colleen breathing for herself. My eyes are fixed on her face, and the sight of the breathing tube, the shocking intruder that could kill her. How could this have happened? We had been so careful, so deliberate with the anesthesiologists, and they with us. And now the very thing we'd done everything to avoid had grabbed us from behind anyway. In less time than it takes to snap a finger. The ground had given way beneath us. 

A nurse stood opposite me on the other side of Colleen's bed. I asked her if Colleen had woken up yet. I asked whether Colleen knew she was on a ventilator.

"Oh, she's awake," the nurse said. "Ask her to squeeze your hand."

"Colleen?" I said. And, with her eyes still closed, she squeezed my hand. I held onto hers for a while before leaving the room to speak again with the doctor. "I'm going to talk to the doctor, Colleen," I said. "I'll be right back." I didn't know what Colleen knew. I didn't know what she was thinking or feeling. I didn't know how sedated she was. She couldn't have told me anyway. The breathing tube had rendered her mute.

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'.

TUESDAY AM . HOPKINS 10TH FLOOR
Colleen is still in recovery after yesterday's long procedure, which was a success. More to come.

PROCEDURE OVER . COLLEEN IN RECOVERY
Colleen went into recovery about a half hour ago. I'm waiting to go back to see her. I'll keep you posted. (Truth is, turns out the procedure staff forgot I  was sitting in the waiting room, so I didn't find out the procedure was over until I spotted RED on the monitor.) More to follow.

FOR YOUR VIEWING PLEASURE WHILE WAITING