The Blog of mamapolo

My most excellent and beloved daughter Abby came from Virginia on the day before Thanksgiving, and not a moment too soon, may I add.

She came into the house and gave a subtle but audible squeak of dismay. One of the many problems with a task that requires you to be out of the house many hours a day is that the dogs keep on shedding, and because they have a doggie door, they keep on tracking stuff in, and so it goes. In essence, the life of the house (its only purpose being to create work!) continues in your absence. It can (and in my case did) get ugly.

She spent the first night helping me get our Thanksgiving Day celebration with Tim organized - someday I may tell you about the obstacles THAT presented - but the bottom line is, we (mostly Abby) got 'er done.

I went in to sit with Tim early, then Abby took over while I packed up the vittles and went to pick up Tim's elderly music teacher who joined us for our feast in a private dining room at the rehab - complete with tablecloth, flowers and music.

It was truly a joyful time, and Tim ate like the proverbial lumberjack. We chatted and ate and then Tim & his teacher visited in his room while Abby and I cleaned up and packed things away. I took the leftovers to the staff kitchenette and put the word out that there was food for the taking.

We shared sitting responsibilities in the days that ensued. Today, Abby was with Tim when he made her call me (in one of his foggy periods) and began the conversation with "Your daughter is gutless."

"What?"

"I asked her to take me to the music store because I want to get some Irish music, and she won't take me."

"That's because she's not supposed to," I told him. "And you know it as well as she does." I went on to tell him he owed her an apology, which he offered freely. It was clear he lay there in his bed plotting an escape and figured, 'Abby's young and fearless - SHE'LL spring me!"

Abby told me later that in the conversation prior to the phone call, when he proposed the illicit trip to the music store, she did as I had instructed and began the "grounding" litany - what kind of bed is this? (answer: a hospital bed) - so where are you? (logical progression: a hospital)

She said those words were barely out of her mouth when he looked at her with disgust and said, "Oh, please, don't start THAT **** with me!"

I'm sure he wearies of it. So do I. But like so many wearisome things, it needs doing.

Abby will return to her home tomorrow - having gifted me with days she can ill afford, since she is planning a wedding for the Christmas holidays - a subdued and small wedding, to be sure, but still HER wedding.

I am a lucky mother. I am thankful for that and my husband's improving health. I could hope for a bit less crankiness on his part, but if the truth were told, I am growing cranky myself. That's not accurate - I have BECOME cranky myself.

Happy Thanksgiving to you all.

Today we loaded my husband into an ambulance for the strenuous trip to Pittsburgh for his follow-up appointment with the lung surgeon.

The important part of this story is that the surgeon advised us that if his progress continues at or near the same rate, after his next appointment with that doctor in three weeks, he plans to remove the feeding tube and discharge him to my care at home.

Thank you, Lord. His recovery is not yet, nor will it be, complete for a while yet, but every day the decision I made standing there looking at the psych evaluation, and discarding it as incorrect, is proven more accurate. What I thought as I looked through tears at the "dementia, likely from organic causes," diagnosis was, "Ah, but you don't know Tim."

My joy is blunted by frustration at the day's events.

Tim has had a low-grade fever off and on since last Wednesday. The rehab did blood work, and save for a slightly lowered hemoglobin count, all was well. I requested a urinalysis, and the nurse told me this morning when I asked if it had been done, to discuss it with the doctor at his appointment today.

The ambulance arrived at 12:30 for the only-optimistically-one-and-a-half-hour trip to the 2:00 pm appointment in Pittsburgh. It was snowing enthusiastically as we drove off the convent grounds. We arrived, not as late as I anticipated, at 2:20.

If the no-longer-young blonde drama queen at the registration desk had spent as much time registering folks as she did complaining about how many folks she had to register, she would have been done in a third the time. We wheeled Tim in on the ambulance gurney, and Blondie told me, as though he were a side of beef, that I should go back to Section C and ask "What they want done with him." I left the pair from the ambulance with him and did as instructed. The nurse there asked if he could sit in a wheelchair and I said yes.

I wheeled a chair back to him and we helped him from the gurney to the chair. The nurse told me to stay there and register, and she would take Tim back to Section C, where I was to join them. I reminded her that he does not remember that he is not to stand by himself, and needed someone with him to protect him from himself. She nodded impatiently and wheeled him away.

I was fretting about whether someone WAS watching him, and I remembered from our previous visit that we were all set up in the computer and nothing had needed done for registration. I told Blondie that and she gave me that harried bureaucrat glare I recognize so well and told me coolly to have a seat and I would be dealt with in my turn.

So I waited with visible impatience until the man next to me looked at me as though he suspected I might be armed and ready to take our relationship to the next level. I said, "Seriously, I used to be a nice, wait-my-turn kind of person." He laughed and said he understood.

After nearly fifteen minutes, Blondie called my name, checked her computer and said, "Oh, you're all set up. You can go on back."

Choosing not to waste the time it would have taken to blister the large pink ears that jutted out from her upswept hairdo (meow), I hustled to Section C and was directed back the hall to the first exam room.

Guess who sat there in the room, in his wheelchair, in solitary, unsupervised splendor?

I stepped out into the hall and intercepted the nurse who had taken him from me and brought him to the exam room. "I told you he needed to be watched for his safety!"

She looked at me. "I got busy," she said lamely.

"Well, thank your lucky stars that nothing happened to him," I answered. "Next time you get busy, consider how that explanation will sound in a courtroom."

She blanched and I felt a small thrill of satisfaction.

The doctor came bustling in with his lackey, who handled papers and did stuff. Almost immediately the doctor's cell phone rang, and he took the call, clearly a personal call. Twice more in the five minutes he spent with us, his cell rang, and he took the calls. Already irritated, I began to imagine how it would play when he visited a proctologist friend to retrieve the cell phone.

"How's it going?" he asked cheerily.

"I would like to point out that it was YOUR office that instructed me to make sure he had round-the-clock sitters so he didn't try to walk alone and hurt himself."

He blinked. "Yes?"

"I was stuck out in registration and your nurse wheeled his chair into this room and left him by himself, AFTER I reminded her that he needed to be watched. For about fifteen minutes. Plenty of time for another subdural hematoma or broken bone or worse."

He frowned. I didn't have the impression he was frowning because his nurse left my husband alone, but because I had the audacity to suggest it was improper procedure.

He shook it off, and asked a few questions, dictated a couple of lines to his flunky, and said Tim 'looked' stronger and he expected in three weeks 'we' could remove the feeding tube and discharge Tim to home. He emphasized that my husband had to be eating well - which he is not, yet. I requested a prescription for Megase, an appetite stimulant that worked well earlier in the summer. He thought for a moment. "That's a good idea," he said, and motioned to his aide to write that down. He smiled at Tim and shook our hands. "You're going to make it!" he told my husband.

I asked him (as instructed by the rehab nurse) about the possibility of a UTI causing the intermittent fevers and agitation. The expression on his face said clearly that he was a lung surgeon, and he did not do pee. He told me the rehab doctor would have to address that topic.

He was out of the room in minutes - most of which were taken up by his cell phone calls. With a webcam, we could have done the appointment by phone.

The flunky came hurrying back after a couple of minutes and gave me an order for blood work to be done for the next visit. "Did you get the Megase prescription?" I asked.

The flunky gave a really creditable imitation of the doctor's frown and excused himself. He came back five minutes later with the prescription.

He held the door open at the end of the hall as I wheeled Tim through and I asked him to call the ambulance crew to tell him we were ready to go. The cell phone number they'd given me was an 814 area code. The cancer center is in the 412 area. He frowned again. "This is long distance," he told me.

I looked at him hard before I opened my mouth, and he reconsidered and dialed the number. Good thing. I haven't seen a bill for my husband's medical care, but I'm guessing it's well up in six figures. Certainly enough to warrant a 15 second long distance call.

On the way home, the roads were terrible and traffic was worse - it took us over an hour to get out of Pittsburgh, and over two more hours to get back to the rehab.

I was getting concerned because Tim hadn't eaten since 11:30 am, and I asked the ambulance crew to check his glucose.

They couldn't find a glucometer on the ambulance. What? I made them stop for orange juice and milk and crackers just in case.

As the ambulance rolled through the near-white-out of the winter storm which left us with about three inches of snow in a couple of hours, the driver pulled out her cell phone and called home to chat a bit.

I believe my tone was fairly reasonable when I called up to her. "Please, if you're going to talk on the phone, pull over. If you're going to drive, hang up."

She said in an aggrieved tone, "Geez. SORRY."

Those of you who knew me when I was sane will understand that after the past four months I was in no mood for a cell-phone-induced ambulance accident.

Right?

Back at the rehab, I told the charge nurse that the lung doctor did not handle pee problems and to please have the rehab doctor address it. She nodded.

Today was the fifteenth day Tim has been back in our hometown at the rehab/nursing home.

I inquired today, expecting a rebuff, if there was another room we could move to, since Tim's room-mate, a nursing home resident for twelve years (which, in my mind, excuses a great many idiosyncrasies!) was there first, and had the bed by the window.

As senior resident, he felt, and rightly so, that he had control over the room's functions, including heat, light, and sound. He insisted the Venetian blinds be drawn tightly closed, day and night, allowing no natural illumination and creating a spaceship atmosphere. He does not like blankets, and sleeps under a sheet and a light chenille throw. He gets cold, so the heat was always set on "broil."

As an added attraction, he is apparently fascinated (as are most men) with remote controls, and uses them liberally. Approximately 4,922 times daily, he pressed the volume up button until his TV was screaming out the answers on "Family Feud" loud enough to be heard in Philadelphia, and when that paled, he hiked his bed up and down, foot up and down, head up and down, the bed's motor whining in protest.

I don't know if it was bothering Tim, but in my sleep-deprived and raw-skinned state, it was driving me to distraction.

I imagined sitting in that room was like being an embryo in the pregnant belly of a hot-blooded motorcycle mama, roaring through the night on her Harley.

Anyway, to my surprise, within 10 minutes of making my request for another room, we were on our way. His new room has no room-mate (although there is a bed waiting for one). We can control the heat and the blinds, and the quiet was blissful.

Maybe because I did not have to try so hard to hold onto my sanity for the twelve hours I was there, when I left this evening I discovered the answer to a mystery that has been bothering me for two weeks.

The mystery was: How come when I LEFT the rehab hospital, it was a mere hop-skip-and-jump to the main road, but when I entered, it was a long and winding road that led past all the convent buildings? Each night I mentally remarked to myself how amazing it was that night shortened the trip. Each morning I puzzled over how come daylight lengthened it. Was it something to do with one of Einstein's theories? I've heard that the sunlight bathing a wheatfield has weight. Maybe the sunlight drenching the convent during the day pressed down the road and flattened and stretched it? It seemed unlikely.

Anyway, tonight I realized the problem. There are (duh!) TWO entrances to the grounds. The first one I happen on on the route in leads to the spiraling journey. The SECOND one is direct and uninspired. Ah!

Flushed with having solved this conundrum, I exited the convent grounds and headed through town in the gray sluicing rain of a November night. At the red light where I turn toward home, there was an Oriental girl in pajamas (not the traditional 'comrade' pajamas of the Chinese worker, but ribbed white leggings and long-sleeved top cheery with bright yellow flowers).

She was standing in the almost-a-downpour, her long black hair clinging wetly to the shoulders of the pajama top, screaming angrily into a cell phone, the middle finger of her unoccupied hand thrusting furiously and repeatedly toward the moon.

So, either there was an enraged Oriental girl standing on a street corner in the rain making obscene gestures at the man in the moon, or I am very tired.

Or both.

Good night. I am only up to solving one mystery per day.

Mama

I came back to sit with Tim at midnight tonight (because I am truly terrible at scheduling assistance and ended up with this screwy schedule!).

The daughter of a friend who is sitting with Tim some of the time is on a break from nursing school, and we settled on a plan of trying to keep Tim awake and moving as much of the day as possible, so he is weary and prepared to sleep at night.

I must exercise more caution in giving her instructions. She had Tim walking (with his walker) a good part of the afternoon - which is wonderful (except, as I pointed out, he really doesn't need to use a bunch of calories - we're trying to put weight ON him).

When she finally relented and got him into bed - he crashed so hard they were unable to wake him to take his nightly medications until she threatened to call me if he didn't wake up. I was somewhat gratified to learn that invoking my name apparently struck some fear into his heart. I wouldn't have guessed that!

I suggested that we might want to moderate the activity just a bit to make him weary but not force him into hibernation.

He's sleeping soundly. The place is actually quiet, contrary to what I said in my blog the other day. You could hear a pin drop across the hall.

There have now been two days with noticeable progress and NO backward steps. I am aware that this might change at any moment, but it is nice to have a lull in the action. I'm sure it's very nice for Tim, too.

Tim's progress has been steady and visible. Each day he has been better, stronger, more 'with it.'

This day, however, was the best. He tucked into each meal as though he'd been out logging in the cold fall air. Not once did he suddenly stop and get that far away look before he started throwing back the covers because he wanted to go to Radio Shack or out to eat.

He was cheery and wry, just like himself. A new thing between us - when I lean down to kiss him, he often cups my cheek in his hand and gazes at me as though trying to memorize my features. I assure you this is not because I look good. It's because I look good to him.

I came home at six because tomorrow's schedule requires me to be back at the rehab at 6 am, and there are a couple of things (oh, who am I kidding? There are a MILLION things) that need done around here, and can't be put off any longer.

While I hope that this excursion into the nightmare world of serious illness was not for this purpose, I will tell you that it is like nothing else to realign your priorities.

If I had young children (heaven forfend!) I think this Christmas we would be stringing popcorn and cranberries to decorate the tree and making our own wrapping paper. I would steer them away from the 'gimmes' if possible and remind them of our family's faith (whatever our family's faith was) or at the very least, if our household had no belief system, I would have "The Twelve Days of Christmas" and extend the celebration as long as possible.

If I have learned one thing through all of this, it is that all those other things that distract us - television (I haven't watched television to speak of for four months and I notice absolutely no loss of quality in my life!), shopping, automobiles, all of that, is ashes in your mouth when you are waiting outside an ICU unit praying that God will guide the hands of the doctors and breathe life back into someone you love.

Ashes. It matters not at all. Not at all. None of it.

It snowed today in our home town. Big fat flakes swept down onto windshields and trees. Nurses and aides looked anxiously out the windows and told each other, "It looks like it's sticking."

The rehab where my husband is striving with every fiber of his being to get better and get home is situated on the grounds of a convent. The Byzantine Order of Sisters of St. Basil the Great acquired the property from a local coal baron in 1933.

The grounds are spacious and beautiful, dotted with gazebos adorned with mosaics of saints and the Holy Family, designed for prayer and contemplation. As a Baptist, I find the names of the buildings exotic. The Motherhouse. The Retreat Center. The Shrine of Our Lady of Perpetual Help. Driving through the estate at night, the warm glow of light through stained glass windows reassures me, convinces me that behind those stone walls, sisters of the order are praying. I like it that God's attention is drawn to the bed where my husband lies struggling (more and more successfully).

When the paid sitter, who is becoming a friend, came in to relieve me, we chatted for a while. I updated her on Tim's status, and she told me once again how much improvement she sees in a week. His weight was down to 107 - and has risen again to 115. Still not enough, but as with everything, better.

Tomorrow, for the first time, I scheduled 'help' until 4 pm, giving me most of the day off to attend to business matters, run errands (including buying an electric razor for my husband, making sure that the papers for my Family Medical Leave have been properly processed, and that the Power of Attorney I am trying to obtain is underway so I can pay for the sitters), do laundry, pet the dogs, and hopefully, sleep in a bit.

I scraped the ice off my windshield and then found myself without the energy to finish the job on the rest of the windows, so I sat in the Yaris while the defrosters front and back did their work.

The snowflakes swept silently down through the giant oaks that held up their bare arms to receive the blessing. The world was still, and that stillness was healing to me. There is never stillness in a hospital. Bells chime, alarms sound, voices cry out, staff laugh with each other, TVs blare. I sat there and felt my frazzled nerve ends knit again.

Finally, when the windshield was clear, I put the car in reverse and backed out of the parking space and started down the sweeping lanes that lead out of the peaceful isolation of the convent and back into our small city. For the first time in very nearly four months (2 more days, and it is our 4 month anniversary of the original brain tumor diagnosis), I felt I would come back tomorrow and find continued improvement.

Today I told my husband that he has redefined nobility for me. He must feel like he fell into a meat grinder four months ago, yet throughout this nightmare he has (when he is himself) shown grace and strength and steel. He has fought when I would have rolled over and said, "Enough...just let me go."

As soft as down, as gentle as a hand in blessing, the snowflakes fell on the car and on the trees and on the wide open spaces. The stained glass windows shone with all colors of the rainbow. The voice of God spoke and said, "Fear not, for I am with you. Be not dismayed, for I am your God. I will strengthen you, I will help you, I will uphold you with my righteous right hand."

With peace in my heart, I am going to sleep. I am upheld by the righteous right hand of God, and that is the only hand that could keep me from failing.

Good night, dear ones.

My husband is better each day. He is better enough that he often thinks he is more capable than he is at present, and he is returning with frightening rapidity to his independent and self-reliant stance, which has stood him in good stead over decades, but which is now dangerous to him.

If I leave him to go fetch water, or go to the bathroom, when I come back he's getting out of bed. If I take him to the john and carefully instruct him to holler when he's done - he stands up and slips, striking the tap handle for the shower nozzle near the toilet, showering himself and the bathroom.

It is not unlike having a teenager, one who thinks she is both savvy and immortal, when her mother knows she isn't. The difference is that one's teenager rather expects to be hollered at - one's husband does not.

I started to read him the riot act today, but then I was overcome with fear for him and dissolved in choked-back tears instead.

He was very quiet for a long time and then he said in his still-tracheostomy-damaged, whispery voice, "The little blonde from PT was saying today that I was really lucky to have you for a wife." He paused and then said, "She called you a tigress." (I do not recall having any tigress-like encounters with anybody from PT.)

I said, "I only want for you to be patient long enough to get better and come home. If you fall and hurt yourself again, I'll just crawl up into bed next to you and let what happens happen. I'm losing it, honey. I can't fight you and everything else, too."

His raspy small voice continued. "I told her, yes, she's right. I couldn't live without you. I WOULDN'T have lived without you. I want to thank you for all the sacrifices you've made for me."

Sacrifices? He thinks these are SACRIFICES? I got mad.

"I am not sacrificing ANYTHING. The job, the hairdo, the sleep - they are nothing. I look like crap, and I'm sorry about that, but oh well. It is your health that is my concern, and my only concern. But you have to stop bucking me at every turn. You are not as smart as you think you are."

He blinked. Not as smart as he thinks he is? He knows I think he's the smartest man I've ever met.

"You do NOT know more than the nurses, and the therapists, and the doctors, and at this juncture, you do not know more than me. YOU'VE been somewhere else - on a beach in Cancun, at the races in Kentucky, bounding about on the moon - for most of this past month and a half. I'VE been here, studying every ailment, googling every damn word, making notes, asking questions. You have got to trust me."

He sighed, started to argue, then stopped. "Okay," he said.

We'll see. I should've married him about 25 years ago. I'd have him trained by now.

I just arrived home from the rehab hospital after my 12-hour shift. Good news - my friend's daughter and some others are going to help me out, at least over their semester break from nursing school for just a little over half of what I'm paying the professional sitters. That will help - and I will be able to feel like I can schedule a few hours here or there for some me time - for personal, girly, frilly things like paying bills and sleeping and brushing the dogs. I am so high maintenance!

The professional sitters are a surprise to me. They are predictably for the most part older women trying to eke out a supplement to retirement income, but they are also (unpredictably, to me) gentle and seemingly truly caring. They leave notes for me on the legal pad I have on the table in the room, and they spend a few minutes with me before I stagger out the door, encouraging me and enthusing about Tim's improvement in the week he's been at the rehab.

A beloved friend from work appeared unannounced at Tim's room door this afternoon, with her pretty quiet 12-year-old daughter in tow. She brought me a book on caregiving and Tim a piece of homemade cherry pie.

After dinner, which Tim ate most of after I nagged him mercilessly, we watched TV for a while (The Simpsons, God help me, but after all, HE'S the one the hospital bed, so I bowed to his warped taste.)

About 8 pm, he said, "Y'know, that cherry pie would taste good with ice cream." One of many which-is-most-important decisions to be made every day - he's diabetic - are the sugars more dangerous than the fact that he weighs 107? I decided no, they weren't. There's always insulin.

I elicited a promise that he would stay put while I went in search of ice cream, which was provided by a nurse I asked. When I got back to the room, Tim was standing beside his bed, tugging at the blankets.

Shocked, I hurried to his side and put my arm around him before I hollered (softly, it's a hospital), "What are you DOING?"

He looked up, startled. "I'm straightening the blankets," he said reasonably.

"You KNOW you're not supposed to get out of bed by yourself," I scolded him.

He fixed me with cool eyes and said, in the tones of a high-falutin' English butler, "I did not realize that straightening the covers was such a grievous infraction of the rules."

I got him back into bed and then read him the riot act. "Are you aware," I said, "that your refusal to request help like a rational human being when you want to get out of bed is costing you $15.00 an hour?"

He blinked. "No, I wasn't."

"Well, it is. And if you keep up this nonsense for a month, it's going to cost you $5400, give or take. And that's only because I'm sitting with you half the day and only paying for half. Is standing up by yourself THAT much fun?"

"No."

I went over the business of the call button, again. To my amazement, he accepted the shellacking meekly - Tim does not take well to being chided.

Then he ate the few bites of cherry pie with vanilla ice cream he was allotted (I finished the rest - it was excellent, Janet) and caught my hand as I took the bowl from him.

"Still love me?"

I sighed. "Yes. If I didn't, I'd let you run around until you banged out the rest of your brains."

I spent the rest of the evening while he slept trying to decide if my reaction when I saw him standing beside the bed was more horror because he stood up by himself, or more jubilation because he CAN stand up by himself.

Jubilation, I think, but I won't tell him that for a very long time.

I am bone-tired. My blood has stopped moving through my veins.

But...smiling...my husband walked the considerable length of the rehab hospital today with his walker and then walked another half-length to the door of his room.

He told the speech therapist, (after he told her there was such a thing as too much effervescence, a valid criticism of the bubbly giggly up-beat to a fault youngster) the story of how his (our) daughter was in her tenth hour of labor and watching "Little House on the Prairie." She and her husband have a similar reaction to Little House as used to occur at - was it the Rocky Horror Picture Show? They shout out memorized passages of dialogue, mourn over Mary's blindness, worry about Laura lost on the prairie, all in high good humor. They planned to name their impending son Landon after the male lead Michael Landon. The clock was ticking quickly toward the hour and the end of the Little House episode.

Between contractions, she looked at her husband and said with mock dismay, "Oh, no! If this kid isn't born in another 5 minutes, we'll have to name him Gilligan!"

The speech therapist laughed. He grinned. I was, as I often am of late, choked with tears of gratitude.

He is a miracle, and nothing short of that.

He is MY miracle.

I'm going to bed.

(By the way, the baby came quickly and is not named Gilligan. As the therapist pointed out, "Island" would be a silly middle name.)

Mama

This will be short, as time is short.

My husband's status improves every day - but we have much distance to cover. It is astounding how muscle tone disappears so rapidly when one is in bed nearly 24/7 for over a month.

He is so thin and frail, and has virtually no strength in his legs - although his hands, powerful from his musicianship (violin, mandolin, banjo) and his millwork (he produces the telegraph key he invented in our basement and markets it).

The last few days in the hospital and now at the rehab, two physical therapists wrest him from the bed and place him before a walker, then one guides him from the side while another follows behind with a wheelchair in case of a sudden collapse. He walked fifteen steps today, the last few causing his arms and legs to tremble violently. He sat for a few minutes, then walked fifteen steps back.

Progress is gauged by inches, but it is progress.

My internet was down for a couple of days - and since the caregivers I have hired to help me watch him 24/7 to make sure he doesn't hurt himself cost $15.00/hour (which was actually a bit of a deal!) - I am taking a 12 hour shift myself, and I planned it badly from 10 am to 10 pm - which leaves me almost no time to do stuff in the real world during business hours - and less energy.

Still, 12 hours of paid help is $180 a DAY. You see why I am encouraging him to get better FAST.

He still occasionally drifts to the left of reality, but not as often and not as far. When he is in a different place than I am, he gets annoyed at my stupidity because I can't see what he sees.

Anyway - when I got the internet back up today - my inbox was jammed with unanswered emails and alerts from EP - 32 all told, 25 of them from EP-ers. The red letters at the right of my profile page clarioned "New mail!" "New story comments!" "New photo comments!" "New gifts!" "New greeting cards!"

Where we are can be a very lonely place at times, and the knowledge that 'strangers' all over the country took the time to celebrate with me, to offer reassurance, to promise continued prayers...there is no price for that.

Thank you all.

Be good to each other - there's no internet reception at the rehab, and I won't be around much for a bit. I checked out that 'wireless anywhere' access they've been touting, but one has to promise one's first born and sacrifice a goat to obtain it.

So I'll miss you - but I'll be around sometimes - and sometime soon I will be back.

Mama

My husband arrived at the rehab at about 5:45 this evening, and I cannot begin to describe to you the feeling of triumph.

This was the first day I had not been to Pittsburgh in 30 days - arranging things here - for the sitters to be there when I cannot - taking my car for estimates on the deer damage - ordering flowers for my daughter's birthday and for Tim's arrival at the rehab center - attempting to tidy up this mess I call home - paying bills. It would be great if the rest of life stopped when illness begins, but it doesn't.

I called and asked the nurse at the nurse's station to call me when he arrived, but then I couldn't wait, and hurried over to the convent-run rehab center. The grounds are stately and beautiful, even in this chilly November, and the drive sweeps through majestic oaks and pretty monuments, picked out by the car's headlights. I felt a sense of anticipation and joy I have not felt for many years. A sense of accomplishment.

When I arrived at the building at the top of the high hill overlooking our small city, lights glowing from every window, an ambulance crew was loading an empty gurney back into the vehicle. I said, "Was that the guy from Shadyside?" They said yes, and I pumped my fist in the air. "Yes!"

I was a little surprised by their reaction - they were happy to celebrate with me. I suppose ambulance crews weary of negative trips. "How long has he been in the hospital?" they asked. When I said, "29 days," they grinned.

"And now he's out!" Yes. And now he's out.

I hurried in through the beautiful lobby, lush with plants and ceramic tile, and signed in on the guest sign-in sheet. Given the number of residents at the nursing home/rehab, there was a sad dearth of visitors listed on the log. A few old ladies were seated in the television area and smiled eagerly at me. I smiled back, and told them I was sure we'd be meeting again, and went down the hall to my husband's room.

The curtain was pulled around his bed as the staff got him settled, and it was reminiscent of a local theater group production, with secret activity behind the stage curtain. At last they drew the curtain back, and he looked at me and smiled with a sweet welcome. He is not by nature a sweet-smiling man - he is a guy's guy and not given to endearments or mushiness.  "We made it," he said, and it was all I could do to not burst into tears. I am tired and it has been a long haul. "What's my name?" I asked, and he told me.

He ate some of a second supper - vegetable soup, crackers, part of a croissant, sherbet. It was not a diabetic meal, but his weight has dropped to 107 from the 129 we had achieved before this hospitalization. There is always insulin, and he needs to regain his strength and mass. There is chemotherapy ahead, although not, I think, for some weeks.

Finally, exhausted from the excitement of the trip and his progress, he drooped into his pillows and closed his eyes. I couldn't stop touching him, caressing his poor radiation-bald head, his thin arm, his face. He struggled to open his eyes and winked at me.

I said, "Are you happy to be out of the hospital?"

He reached to draw my hand between both of his in what is becoming a characteristic gesture. "I am content," he said. "Kiss me."

I did, and he fell asleep.

Do not miss those moments you have with your beloved. There may come a day when you need to draw on those memories.

Mama

Dear Friends:

My beloved husband is at this moment on his way by ambulance from the hospital in Pittsburgh to the rehab in our hometown.

The nurse who called me, simply to celebrate that fact, said, "And guess what? He asked me if you knew he was leaving - and called you by name! And he called ME by name!"

Now the real work begins.

I cannot thank you enough - all of you - for your support, seen and unseen. I was close to madness more than once (it could be argued I am especially close today!).

I'm on my way to be there to meet him, but wanted to share this blessed news with you first.

Let there be wine flowing, and dancing in the streets, and flowers in your hair.

God is great, God is good.

Mama

I have decided that bipolarism is not caused by chemical imbalances - it's caused by hospitals. I know they've worked their magic on me.

Don't get me wrong - hospitals are amazing places that do miracles as a matter of routine. But when your loved one is in a hospital, it's like the weather - if you don't like your mood, just wait. Up, down, up, down, up, up, up, down. UP!  Well, you get the idea. By contrast, roller coasters are smooth and steady.

After the devastating blow of the psych report - that casual, almost off-hand, "Cause is likely organic," I went to war.

Hospital psychiatrists are as elusive as the unicorn. Presumably they exist, they write reports and stuff, but just try to find one! I never did locate the shrink, but I did pin down a nurse practitioner, an imperious, haughty pregnant chick whose entire demeanor said, "I'm going to tell you whatever I can just to get you to go away." I assured her I wasn't going to go away until I got some answers, which I didn't get, from her, but I did get that valuable piece of information - another name, another number.

Eventually, late Monday, I spoke to the psychiatric nurse practitioner, who was a kind and cooperative soul and took the time to review the report. One of the unsettling things about this entire sojourn is that while I have only one husband (well, one current husband), they have many patients. It is odd to have to explain which patient they wrote off with few hasty strokes of a pen.

At last she was reminded enough of who Tim was that she said, "Oh, yes! I remember now. I was in for that consult. It was our opinion that this is transient - caused by delirium, not dementia." (Delirium being the same behavior as dementia, caused by environmental, medical and traumatic impacts instead of physical factors. Delirium is temporary, dementia is, for the most part, not. This is not a medical definition, but mine.)

Yeah, what I said. Then I set about getting that little notation, "cause likely organic," removed from his records. I have seen too many instances where something like that changed the entire direction of someone's medical life (oh, well, no point in looking for the cause for THAT, we already know it....). I think I was successful. It's hard to know for sure.

This only reinforced my conviction that I had to get Tim out of Shadyside Hospital and into a rehab here in Uniontown. I am convinced, down to my bone marrow, that - what is it, now? long enough to qualify for free parking - yes, today is the 26th day of THIS hospitalization - 26 days in a hospital bed without all the other drawbacks would drive pretty much anybody mad.

So - I began lobbying harder for the transfer. As of yesterday, Thursday, it was all go. The rehab had a bed, I had sitters lined up from Comfort Keepers, and the hospital social worker was waiting only for the doctor's release before arranging the transport. Tim was coming "home", Thursday evening.

Tim had had a slight fever on Wednesday evening, but when I called the nurse at midnight, it was normal, and it was normal on Thursday morning. However, since my research on ICU psychosis (I may write a treatise on AFTER-ICU psychosis) indicated that it can be caused by other factors such as an infection, and Tim was extremely agitated and out-of-mind all day on Wednesday, I was worried there was something brewing at one of the intrusion sites (IVs, ports, feeding tube). I requested they test for infection.

They did (maybe, let's hope, they were going to anyway), and late yesterday afternoon the test reults showed he did indeed have an infection. They started antibiotics, but since UPMC is now a "paperless" environment, the nurse told me, and their computers were down, the consulting doctor on infectious diseases was unable to review everything and pinpoint the precise treatment course to take. They hoped to do that today. I am puzzled about this, since the psych report I saw was on a clipboard with Tim's records, on paper. I was too tired to pursue it, though.

So, having stayed home all day to arrange things financial and logistical, I got in my Yaris (which had less than 600 miles on it when this started in July and now has 6000) and headed for Shadyside at 6:00 pm.

By the time I got to Pittsburgh, traffic was reasonable and we were streaming down Rte. 51 about a mile before Brentwood Towne Square at about 40 mph.

There was an abrupt, loud THUMP, and the Yaris shook. I caught a blur of brown through my front passenger window and another softer but terrifying thump as the rear wheel rolled over the victim.

It is truly a wonder I didn't have a heart attack on the spot. Panic shot through my veins like acid - it physically burned. "I hit somebody, somebody small. Oh, dear Heaven."

The Oriental restaurant Pan Asia was on my right and I whipped into the parking lot, shaking all over. I leaped out of the car, leaving it running with the door standing open and raced to the other end of the parking lot.

A deer lay there on the far side of the street. A deer? In Pittsburgh? It was thrashing but its movements were slowing. A deer. Thank God. Poor deer, but thank God.

I threw up there in the Pan Asia parking lot. Then I went back to my car and cried with terror and relief for a few minutes, called Abby. Then it occurred to me that I had heard of a lot of instances where an animal supposedly dead got up and ran off, and I was afraid it might cause more havoc if that happened. I called 911, and was told to wait in my car until the police arrived. I'm not sure why, unless they thought the deer might want to prefer charges.

But I waited, since I have that compulsive rule-following thing. By the time the police officer arrived (he was approximately 11 years old), the deer was dead. An examination of the Yaris showed only a small dent in the door - the deer had actually hit me instead of the reverse.

Then I went on to the hospital, dreading facing Tim, fearing not only the Tim of the day before, but a Tim disappointed because the transfer to Mt. Macrina had fallen through. He was calm and smiling, and tucked my hand between both of his on his chest and after a brief chat (he thought the deer story was funny, the jerk), he fell asleep.

His temperature was normal, and was again this morning. I'm going to leave for the hospital soon. (I am a little curious, although I pray we're not there long enough to find out - for the first 10 days or so, validated parking was $7.50 for seven hours or longer. On the 11th day (or so) I got a pass, left for me in Tim's room, for $3.50 parking for 24 hours. Yesterday there was a free parking pass - unlimited parking for zero bucks. A notation on the free pass says it's good until 11/20/08. What happens then, do you suppose? They start paying ME?)

And how was YOUR day, dear?

(Author's note: I said earlier in this blog entry that there wasn't much damage to my car - and compared to the damage to my psyche, there wasn't. However today as I left for the hospital, I noticed some minor rumpling of the front panel in front of the passenger door, and later, as I was changing lanes, I checked my passenger side rearview mirror - and it wasn't there. THAT explained the shards of black plastic scattered over the street where the deer attacked me.)

Dear Friends:

Yes, I admit it, there was a brief time when I allowed myself to crumble.

I have received emails and phone calls from loving friends reminding me of how far we have come and how much we have to be thankful for, and they are all correct.

Yesterday at the hospital, one of the speech therapists mentioned that she hadn't seen my husband "Since he was decannulated." (She was referring to the removal of the trach from his throat.)

He waggled his eyebrows at me and said in his still weak and whispery voice, "I'll have you know I've been decannulated."

The therapist jotted something on her clipboard, and said kindly, if condescendingly, "You've been enchanted?"

I said, "Decannulated."

She said, "Oh," and scratched out the note she'd made on the clipboard.

After she left, I said, "Honey, you have to regard this like security at the airport. You CANNOT make jokes about bombs standing in line at US Airways, and you CANNOT let them misunderstand you about mental confusion."

He waggled his eyebrows again. He's always had a low poor-sense-of-humor threshold. And for some reason, after he lost his hair from the radiation, all the vigor of hair-growth has been expressed in his eyebrows, giving him Groucho Marx qualities.

Given his stubbornness and wise mouth, I have my hands full trying to make them see he IS improving. Sometimes I think THEY think I have reverse-Munchausen's Syndrome, that I'm trying to make them think he hasn't 'gone west' when he has.

I began lobbying yesterday to get the psych report re-evaluated. I have seen too many incidents where someone's well-being has been jeopardized by a single statement in their medical records.

My next step: Making him understand that for the first time in a long time, he cannot be pro-active and simply get out of bed and go home, or alternatively, yell at me until I get him out of bed and take him home. His obstinacy and determination has been a virtue in many instances. This isn't one of them.

Thanks for slapping me out of my hysteria (although you did it gently and sweetly).

I'm bettah now.

"Yea, though I walk through the valley of the shadow of death, I will fear no evil, for Thou are with me."

:)

I was hesitant to post this new information, because I feel like I have dragged you folks along with me through this ordeal, and it seemed cruel at first to supply distressing news.

But I guess honest is honest whether it's good or bad.

I requested a psychological consult for my husband and it was performed early morning on Friday. I asked about the results and was told by the social worker in the hospital that it wasn't yet 'posted.' He advised I could ask a case manager for the information today (Saturday), which I did upon my arrival at the hospital.

My daughter, valiant soul that she is, and most excellent daughter, having already put her life on hold to fly to my side and help me this week, took upon herself the mission of visiting local rehabilitation centers (four of them) to try to determine the gentlest for my husband's next stage in recovery. Before embarking on her quest, she cleverly sat down at the computer and made up a list of questions she wanted to ask, and so provided me with a very cogent and intelligent analysis.

Back to the hospital. I asked several times to speak to a case manager, but of course it is a weekend and there are few personnel at the hospital except nurses, therapists and surgeons. The parking garage nearly echoes with the empty "PHYSICIAN ONLY" parking spaces.

I ran into a woman I had met during my husband's last hospitalization at Shadyside. We had begun casually chatting and found we had a fair amount in common. She is a case manager. I explained my plight - I wanted to see the results of the psych consult but couldn't find anyone who would provide them.

She gently told me she was working another wing of the hospital, but if I hadn't gotten any word by Monday morning, to call her. She gave me her card.

About two hours later, she came into my husband's room. She said, "I was thinking about it, and I wouldn't want to wait another 48 hours."

We went out to the nurses' station, and she got my husband's chart. We read the psych report.

My husband had already told me that "A shrink was in, trying to find out if I was tracking properly." That in itself gave me hope - he knew when he was being probed.

The psych report did not support that hope. The doctor thinks his damage is organic, meaning brain damage. Nobody seems sure why. I'm not sure it matters why. It may develop that it does matter.

I believe that my husband received the best available care, the best care the hospital could provide. I can't ask more than that.

My initial reaction was predictable: devastation.

The kind social worker, Mary Beth, put her arm around me. I cried. "It's not fair," I said, as though the past three months HAD been fair and this was a new development. "He deserves better than this."

She just looked at me, knowing there was nothing to say.

Then I stopped crying. What was I thinking?

My husband and I are both determined sorts of people. We both believe that God has a plan for us, and if this is His plan, well, then, I can't accept all the blessings He has bestowed in the past and then reject this decision.

There is no way to know at this point whether the shrink is right or wrong. I do know that I do not accept his analysis as fact. I said, "Shrinks have been wrong in the past."

"Damn straight," Mary Beth said. "Shrinks have been wrong in the past."

It is frustrating that this sort of thing always seems to happen on weekends when nobody who knows anything is available until Monday. But perhaps that is better. I have tomorrow to regroup, and then back into the fray on Monday.

As soon as it is possible, as soon as he is strong enough, my husband is coming home with me, in defiance of the shrink's advice to (he didn't say it in these words) find an acceptable storage facility. We are going to work on this together.

I went back into his room and he smiled as I kissed him. "What's my name?" I asked.

He told me.

"What am I to you?"

"A friendly neighbor."

"What?"

"A friendly neighbor."

"Do all your neighbors kiss you on the mouth?"

He grinned. "Not all."

"What is our relationship?"

He looked at me as though I were daft. "Husband and wife," he said, and turned back to the James Bond movie on television. Then he looked back at me. "And friendly neighbor." He IS still in there, I don't care what the shrinks say.

I ask for your prayers, as always. Pray for my strength and Tim's healing. Please.

Today my daughter and I stopped at PetSmart before making the daily sojourn to the hospital.

Our purpose was to outfit the Corgii in a manner fitting for Hallowe'en and in a way that would hopefully produce smiles for my husband, who is desperately weary of being in the hospital, but not yet ready to come home safely.

I had never dressed a dog that I can recall. The costume choices were:

An orange pumpkin suit with a green stem-cap hat.

A brown, white and black cow suit.

Spiderman.

A ghost outfit.

Snow White.

Tinkerbell.

A witch.

A dog bodysuit with "Boo" on it followed by the message "Don't scare me, I poop easily."

Hmmm.

It turned out our choices were made for us - only the witch outfit came in the correct size and configuration for Clancy's long low brawny body. I assured him that it was a warlock and not to feel humiliated or gender-confused.

Cassy, hilariously, could only be inserted into the Tinkerbell costume. Her personality is about as far from Tinkerbell as mine is - maybe further.

And so, the Corgis, feeling pouty and put-upon, dressed as a warlock (black cape with a pointy hat with gold stars) and Tinkerbell (a green and pink tutu with gauzy wings) rode to Pittsburgh with me. They perched sourly on the back seat of the Yaris, Cassy grumbling non-stop. "This is stupid," she yodeled for an hour and three quarters. "We look stupid. We can't go out in public like this!" Clancy just looked warlocky and miserable. Abby followed in her car.

Upon arrival at Shadyside, we rearranged their costumes, and rode the elevator to the first floor. Clancy's hat kept slipping down over his eyes, or off to the side of his neck. Cassy trotted along, cooperative but subdued. She hoped if she kept a low profile nobody would notice her in the ridiculous tutu. She kept grumbling, "I hate my mother."

As we disembarked, an older woman with a cane stopped in the middle of the hall and rhapsodized over the adorable doggies. Another half-dozen people gathered around us. We were creating an incident and blocking access to the elevators. We moved along.

I held the pups while Abby visited the restroom. Cassy kept eyeing those who approached her. "Wanna make something of it?" her eyes asked. Clancy just kept his pacifist eyes wide and innocent, trying to convey the message that he wouldn't know a necromancer's spell if he fell over one and he was just a nice, basic kind of guy.

People raved and stopped and petted and pointed and smiled as we traveled through the hospital corridors, onto and off of elevators. Cell phone cameras clicked. Everybody giggled. Cassy blushed furiously. The staff on the third floor flocked to my husband's room, not to check IVs or take vitals, but to admire the Corgis.

My husband, exhausted from his first real walk - around the square that encircles the bank of elevators, smiled and petted them. Clancy carefully stood on his hind legs and licked his cheek, then pressed his forehead against Tim's, communing. Cassy snuggled up against his leg and earnestly explained she wouldn't have worn that sissy tutu for anybody but him.

Abby and I walked the dogs back down to the parking garage to more rave reviews. I gave them water in a bowl we'd brought for the purpose and then we started for Abby's car, Abby with Cassy's leash, me with Clancy's.

A brief moment of confusion occurred when Cassy misunderstood the direction she was expected to take and circled around me, catching Clancy's leash as she passed. We spun in a little pinwheel of women and Corgis for a moment until we got it sorted out.

Then Abby took the dogs home and I went back upstairs, where my husband said, "They looked great. Thanks."

That's all I wanted to hear.

Yesterday I engaged in a flurry of activity in the morning, trying to figure a way to extract some funds from our joint checking account (can't find the checks, lost the debit card - yes, I reported it). At last it was accomplished.

In the meantime, my cell phone battery had died. When at last I was in the car on my way to the hospital, I plugged in the cell car charger and immediately received notification of a voice mail. I accessed it and found it was from my supervisor at work, who explained that my husband had called my work phone from the hospital (He doesn't know I've been there all day, every day. Why, oh, why, didn't I have someone take videos as proof of my constancy?)

My work phone was routed to my boss, and he was surprised to find himself talking to my husband, and called me to let me know to return Tim's call. Why neither of them called the house is anybody's guess. 

When I called my husband's room, he answered! That sounds so simple and obvious, doesn't it? He answered audibly and cheerfully. He was glad to know I was on my way.

Upon arrival, I found the doctors had 'downsized' the trach and now the only breathing help he is getting is oxygen through the nose. His voice comes through much clearer, nearly normal. They plan to remove it completely in the next few days. Then he can begin learning to eat and drink again.

This is really about cherishing simple everyday things. The next time your significant other, or child, or parent, calls you, try to imagine how you would feel if you hadn't heard their voice on the phone for the better part of a month, how you would feel if during most of that month you feared you would never again hear their voice on the phone.

Perspective. I am learning perspective. A phone call? $1.00. The ability to make a phone call? Priceless. Receiving a phone call? A price above rubies.

Love,

Mama