Saturday, October 30, 2010

Home, Day 21, Very Special

Time seems to travel faster here.  Sometimes I think to blog but often the news is banal, within the context: toes wiggle more; leg bends; foot is allowed to touch the floor without weight; can stand for longer periods of time; a stool is sometimes useful...and so on.  We are toddlers struggling to assert ourselves in ways that will be helpful to one and other.  Shooting the rapids.  No more sitting in the barka without a care in the world, other than the intense gratitude and focus on healing and comfort. 

Anyway, today was a new day.  Our friend, David called last week to inquire of me whether it would be ok to ask Chico if he would like to have a visit from Drupon Thinley Ningpo who is a Tibetan Lama.  This lama would be teaching in Bristol on October 29-31.  Chico loved the idea and set his mark on attending the Friday sessions: Illusory Body Yoga Teachings.

He anticipated three major things this week: a hospital visit in Burlington on Thursday, the teachings of Friday and a lunch with the lama today.  The highlight of the visit to Burlington was time with Deb and no serious news.  Friday's delight was first getting into a building that was not handicapped accessible (it's a whole new world) with assistance and skill and second, the teachings themselves. Helpful.  Last night Chico was so peaceful and delighted.  It was very fun to see. We were also delighted last night by a great visit with John and a yummy dinner. Today, Chico actually made lunch for Drupon Thinley Ningpo, his translator, driver and me.  It was difficult to watch, easy to support the meal making and delicious to eat.  Chester called from Chicago during this time, "Wow, what an interesting day you are having," as I stood in the rain looking at bare trees from the porch I had to agree.  After lunch we received some teachings at the kitchen table.  Then we spent some time hanging out in the living room.  We felt full.

As the lunch friends left, Pamela was walking by.  We beckoned her in even though she was eager to get home to see Miss Sophie.  Next news, Bud is at the door with a new illustrated chapbook.  FUN.  He also brought treats and good humor.  At the next knock we found Chris with a pie and a family.  It was great to have them all here.  The house swelled.  The interactions were lovely all around.  Rich, rich, rich. 

One last thing, Diane, a home health care nurse, came by and took out the picc line.  Dr.s' orders.  Really, all of them.  Hopefully the infection is gone though we won't test for two weeks.  Forty - two centimeters of very fine tubing were removed.  The nurse looked familiar.  She'd cared for my mother at home too.  They talked about horses.  We talked about our parents today, our childhoods, and the good fortune that found us there in our horsey pasts.  I like talking with people that knew my parents and visited the place where I grew up.

We have had many incredible meals cooked for us this week.  More muffins too.  And soups.  Thank you, fine people.

Sunday, October 24, 2010

Welcome Surprises

You would not believe the people we have met through the mounting days of recovery.  As I yammer away on these keys, there you are thinking of Chico, thinking of us.  Forbidden bacon kicks and sputters on the griddle, Chester sleeps upstairs, Chico plays with You Tube in the living room while still in bed, and I read the latest emissary of your love and thoughts.  It's a green light on the waffle iron.

These people we have met, the ones I refer to now, were not strangers before the accident.  They were friends and family, they were all of you.  Given the opportunity the crash has brought, you have told us things we didn't know.  You have put words together in ways we didn't know you could.  You've mixed ingredients to make us unfamiliar food; you've done unexpected deeds and shared your writing.  You reveal yourselves to us.

The words this morning are most surprising.  Sometimes I don't read them, I think they are not for me. When I do though, like today Billy, I am completely hobbled.  Stopped still in my tracks around this house.  You've plunked me down to ruminate.  I want to rifle through Chico's basket of letters and revisit more of this.  I could also scroll through my inbox, or read through the comments.  The wealth of this nation, and humankind more generally, shows up in our lives.

Friday, October 22, 2010

Home, Day 14

We had an uneventful trip to Albany.  By that I mean that the pins were not removed.  Two more weeks.  I think there was a misunderstanding.  Chico thinks the doc saw something in the x-rays.  The toes were not only broken in the crash, they were dislocated.  It was the reservation of the relocation that the doctor attributed the additional time to. 

Dr. Hospodar was obviously pleased with Chico's progress.  He said the x-rays look great.  He replaced the knee immobilizer with a "0 to 90" brace which means Chico can bend his knee now. It bends with pain and difficulty.  Both Chico and the doctor were beaming yesterday.  We were in and out of the "Medical Arts Center" in an hour.

The trip down and back was great.  Our friend, Mark, drove us in his very comfy van.  Mark is an excellent conversationalist, which contributed to the ease of the trip.

My brother, Edgar, awaited us at home with oodles of fresh garlic, shrimp scampi and good cheer. He's a great cook and an excellent host-even in our home.  It was a sweet evening.  He left before we were up. 

I hope you all are well.  Thanks for keeping up with us.

Thursday, October 21, 2010

Off to Albany


We are being driven to Albany by our friend Mark today.  Hopefully the toe pins will be removed. 

Also, to anyone who has callled me on my cell I am issuing one BIG FAT APOLOGY.  I thought I had it mastered but apparently not.  I found 26 hidden voicemail messages this morning dating back as far as 10/2.  I hate my own incompetence.  Anyway, if you were waiting to hear back from me...or if you referred to a message you left (Bonnie, John) and I looked blankly at you, now we know why.  It wasn't just that I can't seem to remember anything.  Anyway, I think I've figured this out now.  I was wondering why everyone had cut me off. 

OOPS!  Chico just found 14 on his phone too.  I wonder how we lost the thread of our voicemails. 

This has been a pleasant (can you believe it???) respite from the trepidation looming regarding our fast approaching day trip.

Monday, October 18, 2010

The Picc is in!

We had a long but good day at the hospital today.  It was an intersting character study.  Fletcher Allen has some beautiful art work up and beautiful views - just to mention a few contrasts.  Chico didn't sleep much last night but he bore up well.  The drive in the Prius was  not exactly comfortable but it was efficient!  There was a really great valet guy there to help us disembark and reembark even though I did the parking.  Otherwise, things were pretty uneventful.  Well, not entirely uneventful; I saw a handful of people I know to varying degrees including a new and dear friend who had a heart attack last week.  She was looking fantastic. 

One commenter suggested I use the site, 'Lotsa Helping Hands' to coordinate help for us.  Thanks for the suggestion.  At the same time people keep asking who is coordinating meals.  Since I don't have email addresses of everyone that has asked or offered, I've just set joined a site that will help us coordinate meals.  I have put dates for three meals a week from now through January.  (That's when Chico will hopefully begin to bear weight.)  If that doesn't work for you and you want to make us a meal, feel free-at least you'll know the context into which you are delivering food.  We won't turn food down, and having it here has been a huge, huge help.  Thank you to those who have delivered.  Also, don't feel obligated, there is something very homey about cooking for oneself, right?  It's just a time problem at the moment.  There is a lot to do.  Here's the site:

Thank you for your support.

Saturday, October 16, 2010

Things are Looking Up

Chico is relatively comfortable as he pursues his probiotic regimen rather than an anti biotic one.  We are still scheduled to go to Burlington for a pic line on Monday and Albany for toe pin removal on Thursday.  This morning he did a bit of dancing.  He was pretty happy. 

Funny to think that if he'd thought to jostle himself in that way as few as three weeks ago, well, it was unthinkable.  Even as we sat on Albany beach.  Nice progress.

Clari brought by some of John's famous muffins.  Chico-"Best muffin I've every had."  They are a nice follow-up to Beth's perfectly timed apple pie.  That met an articulated craving.

Meanwhile, I found my lost watch, the lost key to an important building, lost discharge orders...just a few misplaced items outstanding...And I love a rainy, fall day. 

Thanks for all of your help!

Thursday, October 14, 2010

Pernicious Nids

Whiile initially the transition was terrific we have come upon a setback.  Chico's UTI persists or recurs.  He has already had two rounds of heavy hitting antibiotics delivered intravenously while we were in the hospital.  Doctors were confident on Saturday that the infection had been taken care of.  The revelation of a positive result on the culture yesterday was just short of devastating. 

We are rebounding.  We have spent the last 36 hours weighing options.  There are somewhat conflicting reports on the best course of action.  At this point Chico is scheduled to go to Fletcher Allen in Burlington on Monday morning to have a pic line put in.  A pic line allows a person to have IV's put in over a long period of time.  It has a risk of infection in its own right but IV antibiotics may be what Chico needs to beat this infection.  (On the other hand, they haven't worked yet.)  We then plan to come home and have Home Health Care support Chico's IV regimen with Chico and I administering the antibiotic as well.  Chico is quite adament about staying out of the hosiptal.  Since the bacteria he has is hospital born, we have a strong and shared inclination to avoid another hospitalization. 

People near and far continue to be incredibly supportive.  Chico is having a little trouble getting any down time in his day...We are all adjusting.   Thank you for your continued interest, comforting words and kind gestures.  It all helps. 

Vermont outside our living room window is ablaze with color.  It is gorgeous.  I am thankful that Chico isn't missing it.

Tuesday, October 12, 2010

Tuesday Night

Well, we're settling in to this new routine.  I'm in our own version of the barka lounger, Chico's in Chester's bed which I moved downstairs and into the living room last week.  He reads the paper, he rattles around, I write and I read.  We are trying to eat our evening measl earlier than we ever normally do so that we can get ready, get set and get to sleep so I can get out early in the morning.  It does seem unkind to get Chico up at 5 or 5:30 so that I can be sure he is bathed and breakfasted before I leave.  Or is it unkind to leave him to do all this stuff alone?  These are the kinds of things we are working out. 

The easy thing about the hospital was that Chico was only responsible for getting better, monitoring his body and his care, and speaking up, at least to me, if there was a concern or something seemed off.  I was only responsible for being comforting and vigilante and kind.  Other people took care of meals, meds, cleaning and trouble shooting-calling in specialists, perscriptions,  managing our worries, and administration of all of this.  This home business is much more personally complex in terms of who does what and when.  It is nice to live without that edge of anxiety we had in the hospital about everything. It is nice to be in our home, both at once, and to know that we are moving through this crisis.  Thanks for your help on all of this.

Last night we had tofu pot pie.  That was yummy.  Tonight we had ziti.  That was great too.  Thanks for the food, friends.  Tomorrow night it's Mexican lasagna. 

Evening crashed upon us unexpectedly yesterday. 3:00 to 6 PM is a tricky time of day.  Fatigue and pain often join together in distortion of all things positive.  I was also a bit of a wreck having worked a full day and worried about Chico at home but having been unable to get home until after 6:00.  We ate, relaxed and regained some perspective. Chico said, "I want something different."  Dessert?  Bedding?  Pillow arrangement? Ramp?  Room set up?  I had no clue.  He started naming books he'd like to look at.  Chico has a large and varied book collection but most of it is upstairs and inaccessible to him without help.  I don't know his collection well so he has to be pretty specific about where books are when I go off seeking one.  This is really fun; in persuing the requested book I find all kinds of other interesting titles.  I didn't know he has Bhagavad Gita!  The Concise Ramayana was another request.  He'd been listening to Indian music on and off all day.  He then enhanced his thinking and feeling through the reading.  These studies distract him from the leg.  He's back at Ramayana.

I do want to mention Addison County Home Health and Hospice: they have been great!  So far Chico has had five nursing visits and a PT visit. Since we've only been home-this is the third full day, you can tell that things are not exactly uncomplicated but we do feel well attended.  It is a blessing to live in this community, that is certain.

Sunday, October 10, 2010

Sunday Night, Day 1

Yesterday Chico was struck by the quiet at home.  There is stillness.  There is beautiful light.  I was very pleased to find Chico asleep by 10:30 PM and still asleep this morning at 7:30.  He told me he awoke several times in the night to find himself lying in comfort at home.  Nice.  Comfort is still relative at this point though.

He sheds skin like a snake.  It comes off the grafts just as he rolls around in bed.  Little patches of skin-very much like what you might have seen somewhere near a reptile. 

It was a great first day home. Pam, Reinhold and Edgar joined us for breakfast.  Like many of you, they have been so engaged in this process from afar that I forgot that they hadn't seen Chico since Day 1 at Albany Med.  Swollen hands, face, intubation, blood, wierd voice, tubes galore...After they left this morning, it was a not-quite-steady stream of drop ins.   Home Health Care Nurse stopped in to 'admit' Chico in to care.  That was a great 1 1/2 hour interview.  After that we got in a walk around the block. I knew Chico was whupped because he let me push him some of the time.

I haven't set up a roster of visits and food yet. Chico is eager to have a little time alone. I think a little dose will go a long way. There are some neighbors who are at home and on call.  We have food for a few days, thank you to the cooks who have dropped it off!  I am not turning down any help, it is just loosely set up at the moment.  We'll need help in the form of food, company and rides for about three months while Chico cannot bear weight-so if you want to help and you are feeling thwarted, do not dismay. As the third surgeon told us on the first night in Albany, "This is a marathon, not a sprint."  I think of that often.  Chico's request right now is for short visits and a little time to see what it is like to be at home alone.  I can honor that request for tomorrow and see how it goes from there.  Thanks for your patience with us as we figure out our new home life!

This has felt like my first real Sunday of this school year. 

Saturday, October 9, 2010

We're home!

And it's really busy and great.  I'll write more later but for now here are some great photos of the warm welcome we recieved.  John was also here to oversee the first use of the ramp.  It worked GREAT. Pamela came by.  And there were presents, cards and treats accompanying the adornments on the ramp.  Thank you, everyone.  Things are going well, and it seems like drop ins might be fine (see photos).  I'll keep you posted.   The house is already warmer and cozier with Chico in it.

Grocery prices have really climbed in the last 50 days.  When did butter start selling for $4.99 a pound?  I got a cake to bake.

Driving Home

We're in Shoreham. The drive has been beautiful. Chico is dong great. Bonnie is also q champion. This is fun.

Friday, October 8, 2010

Last Night at Albany Med

Chico is very excited about leaving tomorrow, on his fiftieth day here, as you can see.  We have been told more than once that the drive to Bristol will take a toll on Chico. Even as he anticipates that, he is very excited by the thought of being at home.  You'd never know from this photo that his leg and foot are all smashed up, would you?  At home he will need a lot of rest.  He will also have some nursing care and PT in our home.  I've made what preparations I could think of at home, with the help and advice of generous friends.  We've lifted all the floor coverings, tried to widen all passageways, moved a lot of furniture to the barn, removed doors and such.  We'll see once he's home how it all works out and what needs to be adjusted.

Many of you have expressed happiness about Chico's discharge and an eagerness to see him.  While I appreciate all of the concern and generous offers of help, drop ins won't be helpful right away.  I am eager to develop a schedule of visitors though so that Chico will not spend days alone either.  Thanks for your cooperation on this.  Please doemail me and let me know what works for you if you want to see Chico in Bristol. We have been advised by other people convalescing as well as health care workers that this is the way to go.

Bonnie and I enjoyed a beautiful ride down.  The foliage was spectacular as the sun shown brightly.  There was a lot of traffic.  We are hoping for another scenic day in the Luxury Liner tomorrow!  It will certainly be an emotional ride. 

Tuesday, October 5, 2010


See what I mean?  We have really wonderful friends who also have really wonderful friends who are building us a ramp.  Thrilling to have that partially done and to enjoy the attendant visits from the friends.  I feel surrounded. 

The designer called at 6:45 AM to tell me the wood was about to arrive.  I'd forgotten what building projects are like.  YIKES.  I was in my pajamas still and actually should have been on my way to work.  From the upstairs bathroom window, I could see someone was parked in the driveway.  The wood guy.  I gotta get ready, man!  Are you going to knock on the door now?  Well, I need to be grateful.  I got dressed.  Wait a minute, Billy has a white car.  I look out...That's Billy.  I should rush out and see him.  Oh yay!  Billy to the rescue too!  Wait, he's waiting in the car so I can get ready for work.   Smart man!  Oh yikes, I'm in a frenzy.  No wonder my hairbrush is (still) in the fridge and I can't find the new microwave.

By the time I was ready to walk out, Billy was sitting on the stoop.  We had a little visit-really nothing in the way of hospitality-and I headed off.  When I got home, you can see what had been done!  Joy and jubilation!  It is amazing the many ways people can show deep and heartfelt caring.  Even love. 

 Chico was thrilled by these photos. "Much better than I imagined!"  Yeah, no real treat in imagining oneself having to enter one's home in a wheelchair.  But when you see it's your good old home, with a manageable ramp designed and built by talented men, hey!  It all looks a great deal sweeter.  I think Chico is beginning, beginning to be able to imagine he'll be home soon. 

Meanwhile my friend, the social worker in Albany, and I are striking up quite a bond.  She's been great to us from the moment we met her a week and a half ago - candid and available.  After the team meeting today, Chico is still scheduled for a Saturday discharge.  There are some things that could get in the way but she is planning to have all the apparatus I'd need to get him home delivered to our house on Thursday so we can drive down Friday and drive back on Saturday.  We are eager and hopeful.

Sunday, October 3, 2010

Sunday Night

Ok, I just found my hairbrush in the refrigerator.  And I'm not the slightest bit concerned. 

It is definitely becoming increasingly difficult for Chico to stay in the hospital.  It is still an interesting place for me while he's there.  I am continuously (continually?) intrigued by the rythm of the hallways: people on the phone having just witnessed "her last breath,"  people headed in to give birth, bewildered people of all ages, children wondering, "But why is it called a 'bank'?" as they pass the blood bank, clergy looking cheerful, clergy looking severe, bewheelchaired riders headed out for a smoke, doctors in a huddle, single doctors avoiding eye contact, assorted familiar employees..."Hey, Susan."  "Where he at now?"  "Hello."  "I found Martin!  Yup!  I visited him."   

There are certain times of day when I love to walk in because staff are walking out to catch the shuttle and I see people I know from other parts of Chico's stay.  Or I may be walking out when they are coming in...Shift changes.  I see people who have been so briefly, so intimately and critically important to Chico and therefore to me.  I feel a little thrill and I want them to know they matter. We all do matter to each other.  I wish we could remember that in times without trauma.

I went to Chico's rehab session with him today.  On weekends it is only 1/2 hour per patient rather than three hours.  First I saw this woman who I have seen regularly over the past 6 weeks heading out or in on the ground floor.  She is beautiful.  She looks tough.  I always want to engage her but she always looks ahead.   Stoic.  Her therapy wrangled her.  When she got back to her chair she was exhausted, having put in a good effort.  And she could barely speak, though she tried to.  This part of her therapy involved walking a short loop.  Eventually she recovered and chatted with sparking unpredictable encouragement to the other people in the room.  She gave them energy; she was a bright light.  I'd wanted to see that all these weeks, this is the engagment I had wanted without even knowing it. 

In the gym all the patients line up in a row in their wheel chairs.  On the weekend they have some individutalized work but there is not a one to one ratio of therapists to patients.  In the room there was a strong feeling of comraderie.  I don't think the patients know anything about each other's injuries or disabilities other than what they see in the gym.  It is the only common place for them and there is no down time.  In spite of their minimal relationships there was a swelling empathy. 

Chico began with exercises in his chair.  They sound easy.  Try lifting your leg with the quads thirty times.  It's harder than just sitting there.  Then imagine doing it with a broken femer that has perforated the quad.  Try thirty butt squeezes five seconds each.  Not that easy.  I found exercising along was a good use of time and muscle.  As Chico completed his hopping lap with his walker, his therapist, IV stand and I were trailing behind, he reentered the room like a super star.  They guy with the oversized red glasses who couldn't seem to lift his head smiled, the guy in a matching green tee and shorts set, and a neck brace (who is working on ankle crunches and can't seem to lift his hands) cheered and told Chico how awesome he is, the woman I see outside talked about how much better he did than she (true), the next guy just checked in more generally as he took the leg holders off his wheelchair.  Chico's responses, "Hey!...This'll be you in no time...nah, nah...yeah, good to see you..."  were warm and encouraging also.  I was reminded of all the invisible worlds we have even in our own, familiar, regular, American world.   It was moving.  The whole scene was moving, not just the part about seeing Chico hop.  He did it at a steady pace.  Gritty.

Back home I had a consultation with Jim, a new dear friend (formerly an acquaintance for many years) and valuable resource who is six years past a head-on worse than Chico's.  He sent a package to Chico which included an invitation to me to call him.  Both Chico and I jumped at that chance and Jim came over as soon as I arrived home from Albany.  Here are some salient points for the Little Missus (me) right now.  He drove himself over in his truck, he walked to the house without a limp, climbed our five steps to the house, and twice we went upstairs to the second floor and  back down the stairs.  Phew!  This could not have seemed more generous to me, nor been more thrilling and reassuring.  I should have taken his picture to post!  He gave me great advice about setting up our house, practical information of all kinds and a capacity to see that there is a future pulsing with hope.  This man exudes life.  It is a new life to him too.

As ever, I am filled with gratitude.  And although the days are no picnic for Chico right now, he is comforted by your support and still manages to enjoy a laugh, a good conversation and engage positively with the staff, between long expanses of hospital time. 

The count down to Bristol is in full force.

One More Thing

I neglected to say a big THANK YOU  yesterday to the many people who have sent lovely cards and gifts to Chico in the hospital.  I know those were particularly helpful during the past week...Little promises of lasting ties to the world outside Albany Med.  Thank you.

Saturday, October 2, 2010


 In Albany yesterday some schools were closed due to flooded streets.  In Vermont yesterday roads were closed due to flooded rivers and fields. It was a wild and slow drive down.

It has been a nice day.  Chico had a very difficult week with new infections, antibiotics but no pic line, missed PT and more days without family than usual.  Tricky.  My brother, Gordon, visited today. The sun shown.  Chico was limited by fatigue and paraphenalia so we postponed our outdoor plans until tomorow morning.

We have begun preparations for home in earnest.  Our case manager is working on agency preparations there, ordering equipment and so on.  The physical therapists are setting guidelines.  Our heroic friends at home are designing a ramp and will be sure to 'get her done' before Saturday.  It is both difficult for Chico to wait any longer and impossible for him to imagine getting there or being there. 

We're planning a breakfast of waffles with maple syrup and maple yogurt for Sunday morning.