Santa Claus Pretend

, a photo by gratefulwill on Flickr.

It's somewhat quiet in the Burn Center ICU tonight, which is good, as it allows the singing of the carolers down the hall to come through clearly. Gloria in Excelsis Deo.

Anchors to This Mortal Coil

What I keep going over, in my mind, is that if I had collapsed anywhere but in the doctor's office on September 2nd, I would very likely be dead. If my doctor had sent me home, agreeing that I had a "muscle pull" instead of an infection, it would have been the same result. Hours later, on the emergency flight from Bozeman to Billings, as all my organs failed, so did my heart. But when the doctors tried to revive me, my body chose to live.

I don't think I have any memories of Billings; but once transferred to Salt Lake City, I remember a moment when I, barely coherent, muttered over and over to my vigilant identical-twin brother Tom, "I want to live, I want to live, I want to live..."

Tom's presence during the early days is hazy but vital for me -- vital in the sense that life felt like the only possibility when he was there, the alternative being too awful: a breaking of symmetry. My irrational thought ran, "I can't die, because he would be so alone." (This is not the place to go into the metaphysics of twinship, but it is true that tighter bonds are rare.)

Of course outsiders have their own take on events: one of my nurses, Martina, later said "I never expected to walk in the room and see someone who looked just like the patient standing next to the bed. It startled me! You almost think, 'God, is that a ghost?'" Perhaps more like that I was Tom's ghost, moving in and out of reality, or planes of existence.

My sister Mary was likewise present during some of the early days, and I only have a hazy vision of her departure, and her voice in my ear. My feeling of her presence and then absence became oddly, hallucinatorily, bound up with a dry erase board on my wall, which I interpreted as a large calendar that my sister left me as a gift. The calendar had on it shifting letters that variously indicated that it had something to do with Allison Kraus and "Bury My Heart at Wounded Knee." This strikes me as an amazing premonition, given the trouble that my knees have subsequently been causing me. (My right knee and leg will be much closer to healing after an operation this Wednesday, December 7th, to graft skin and close up various open areas, including my wide-open knee. My left knee will undergo a patellectomy during the same surgery.)

The other constant and crucial presence for me in the early days of my illness (and, as it would happen, rather far into my recovery) was Angel. Angel, from Providence. My dearest Angel. His keeping vigil, like my brother's, filled my heart and kept away some of the worst darkness during long and unsure nights.

Three Months: A Message From Will

Tomorrow marks the third month since my collapse. It's hard not to think of these days as time to reflect on what's happened to me since September 2nd. Yet such reflection is also overwhelming. My memories of the early days of my illness are patchy, which may be a blessing. One foggy incident in my mind involves a test in an x-ray machine. I couldn't understand why, as the machine moved and squeezed me into and out of the proper positioning, the nurses had chosen to leave overstuffed pillows covering my body, which made such movement extremely difficult. I felt claustrophobic and suffocated. But I realize now that the overstuffed pillows did not exist; they were me, as I had swollen up to 220 pounds with fluid. In turn, a memory of the nurses struggling with my bloated body, as they transferred me to a bed comes to my consciousness. Such memories are uncomfortable, yet they pale beside others, in which I can see my blackened and dying limbs, in which I try to move them and fail, in which my doctor asks me what I think about my right hand's potential for viability. A nurse reminds me that I responded to him, "At least I learned to play the violin." I'd like to write soon of my days of hallucinations -- those memories will have to wait for another post.

Reading my brother's post about the early days of my illness also makes me think of the tremendous outpouring of support that I had at that critical time. I'm certain that reading the cards sent by friends and hearing of all the good thoughts directed toward me contributed to my recovery: my kidney function picked up and gradually returned to normal. The team of kidney doctors and the dialysis machine have not been part of my routine for several weeks.

It's my intention with this blog to work out some of my memories, experiences, difficulties, and also my progress and hopes, as I adjust to this new life. I am so grateful to be alive.

Thanksgiving

Self-Portrait

Fitting a Prosthesis

Phil from Hanger Prosthetics  came to the hospital today to fit Will for a prosthetic for his right arm. The result here is a mold for a socket that forms one of the main components of the device.

An Afternoon Stroll

Took a little field trip today around the hospital and enjoyed the view of SLC. November marks Will's third month in Utah! Please keep the cards and emails to him coming.

More Music

It is always amazing when strangers reach out. Thank you to Cory Mon & the Starlight Gospel and Dustin Christensen for sharing their music with Will. 

Click on the links to listen to their music.

An Update...

Dear friends, family, and colleagues of Will-

Thank you, thank you for your continued support of Will through e-mail, post, video, or other media.  To you who have sent your thoughts, know that Will is buoyed by your heartfelt messages, so please keep them coming.  The hospital staff collate all of the e-mails that are sent to Will via its website, and provide them to him each day or two.  The positive energy that Will receives from these messages is tremendous, and they strengthen his determination to move forward with his life.  I understand that there has been a lot of activity on Will's Facebook page, too, so that might also be a good way to send him a note, photo, etc.

Much has happened since my last mass e-mail update, most of it challenging, but all trending toward recovery.  Over the past month, Will has undergone two skin graft operations for extensive wounds to his legs, and a third for additional wounds on his hips and flanks.  Very likely he will have one more graft operation to address remaining areas of dead tissue.  Thus far we have avoided major setbacks, such as secondary infections, which has enabled Will to put his energy toward healing, and as a result his body has made great progress.  For example, Will's kidneys, which had failed acutely during his initial Group A Strep infection, have staged a remarkable recovery, and last week, after many dialysis-free days, the renal team signaled that they have no further clinical need to follow Will's kidney function.  Other significant milestones include: the start of physical therapy, increasing Will's strength and range of motion; the start of occupational therapy, including the fitting of basic prosthetics, enabling Will to feed himself a few bites at each meal and use an iPad, for examples; and a few free-wheeling trips on a wheelchair or cardiac chair beyond the ICU, both within the hospital and outside on fine-weather days.  Will's hard work on his incentive spirometer has paid off to the extent that he no longer requires supplemental oxygen, and his parallel effort to take in as many calories as possible through food has eliminated the need for a feeding tube.  Will's effort through all of this has been heroic, and though he is exhausted, he is getting stronger daily.

With this progress, conversations among Will's family and caregivers have turned to next steps: where will Will go for rehabilitation?  Today, Will will meet with a prosthetic professional, and we will understand our options better following that meeting.  Given the importance of friends and family in supporting a patient through rehabilitation, I am personally pulling for Will to go to the Spaulding facility in Boston, yet there are a number of issues that need to be settled before we know if that is even possible.  I will update you all again when we make our next move.

Additionally, I have returned to my family in western Massachusetts for the time being, and plan to return to Salt Lake City when Will is closer to being discharged from the hospital.

Again, thank you for keeping Will in your thoughts, and for your friendship and support through this crisis.

Best regards,

Tom L.

The Sound of Music

A few days ago we put a call out via facebook, asking for volunteers to come to Will's hospital room and play some music. Many people have reached out, and tonight we were honored to have Brandon Robbins and Mark Garbett of  "Moth & the Flame," share their talents. It was a very moving night for all of us.

Watch the concert here:

Salt Lake City, Month Two

Sustenance in the Cardiac Chair

A ride in the cardiac chair allows for a trip outside. The cardiac chair is a precursor to a wheelchair...it lets the person remain horizontal, while being able to travel. Will's feeding tube can be seen, though it is unplugged here.

Letters & Emails

Dear friends, colleagues, and family of Will -

When devastating illness strikes like a bolt from the blue, an important factor in the outcome is the afflicted person's attitude.  You all have played a significant role in bolstering Will's spirits over the past weeks by sending cards, e-mails, and other communications, which have all been shared with Will as his body begins something of a physical recovery, and Will is grateful for your support from the deepest part of his heart.  I believe that we are now transitioning into what I hope is a stable/improving phase of this crisis, so I write to update you on Will's condition, and to ask you to continue to keep Will in your thoughts, sending good energy in his direction by whatever medium you favor.  You can send Will e-mails directly via the University Hospital website at http://healthcare.utah.edu/hospital/email.html, or you can send a physical note to him care of the hospital at:

University of Utah Hospital

50 Medical Drive

Salt Lake City, Utah 84132

All of the e-mails that come in to Will via the Hospital are printed and delivered to him every few days by the customer service folks. He reads each one and all are very much appreciated.

Knitted mouse from Samantha keeps Will company.

Will's Story...

September 20, 2011

On the morning of Friday, September 2, Will walked into the Deaconess Hospital in Bozeman, Montana, having experienced increasingly severe pain in his upper right leg through the week.  He was admitted to the hospital with suspected appendicitis.  Within hours, appendicitis was ruled out, and Will's condition rapidly deteriorated.  By evening, due to critically low blood pressure, Will's kidney and lung function had essentially failed, and other major organs were faring little better.  Will was placed on life support before nightfall.  Dr. Robert Schoene, critical care physician at Deaconess, recognized Will's condition as sepsis, with an unknown root cause.  Dr. Schoene knew that Will would require dialysis to have any chance of survival, and arranged to have Will moved to the St. Vincent Hospital in Billings, Montana; the move was accomplished on Saturday.  The medical team at St. Vincent supported Will's core functions while the root cause of his condition remained a mystery.  Diligent care through the critical first days allowed Will's body to gain slight ground, and over the course of a few days, Will's heart, lung, and liver function slowly improved.  

On Tuesday afternoon, a breakthrough occurred when Group A Strep bacteria were cultured from a sample taken from Will's leg in Bozeman.  With this information, Will's condition was provisionally diagnosed as a Group A Strep Toxic Shock Syndrome, enabling a targeted treatment regime.  However, a terrible component of Will's infection was a condition known as necrotizing fasciitis, which had visibly caused extensive tissue damage, especially in Will's arms and legs.  The team in Billings saw that a larger medical facility would be necessary to deal with this situation, and so in the wee morning hours of Wednesday, September 7, Will was transported to the University Hospital in Salt Lake City, Utah.  Under the care of Dr. Jeffrey Saffle and his team at the Burn Trauma ICU, Will's general organ functions continued to improve, to the degree that he was able to breathe on his own on Monday, September 12.  By this time, Will was groggy but conscious, and he was able to communicate and understand his condition.

The improvement in Will's alertness and core functions, on the positive side, was matched by increasing concern about the viability of his limbs as time went by.  Over the first days in Salt Lake City, Will's wounds to his extremities essentially declared themselves to be unrecoverable.  On Tuesday, September 13, Will underwent surgery to amputate his left and right legs below the knees.  And, yesterday, Monday, September 19, following several days of superb consciousness and more-or-less steady core function progress, Will underwent surgery to amputate his left arm just above the elbow, and his right arm at mid-forearm.  Will is now recuperating from this surgery, and I am hopeful that his condition will continue to generally improve.  Next steps include multiple skin grafts to heal areas of dead skin--likely to occur within 10 days or so--and beyond that, physical therapy, perhaps starting in 2 to 3 weeks.  Also, Will's kidney function remains basically zero, and he continues to require dialysis to survive.  We are not yet out of the woods, though we are much closer to their edge than we were two weeks ago.  Will's continued physical improvement is a testament to his fundamental fitness, strength, and youth (in concert with the wisdom and outstanding practice of western medical science).

The insult that Will's body has endured over the course of this infection and its aftermath has been extraordinary.  More extraordinary, though, has been Will's own emotional and intellectual response.  Will is facing his situation with courage and passion.  He is gathering strength from outside of himself, to be sure, from the world-class care he is receiving from the team here, from the presence of friends and family, and from the expressions of love and support from people who cannot be here in person.  However, Will is also gathering strength from his superlatively rich and deep knowledge of art, music, poetry, film, and literature.  Will's skills of recall, textual analysis, and synthesis are helping to save his life, in that they are supporting his positive attitude in the face of indescribable horror.  From Shakespeare's 18th Sonnet, to Purcell's Dido and Aeneas, to RoboCop and The Diving Bell and the Butterfly, Will is triangulating his position against many cultural benchmarks of tragedy and redemption, and is finding that he wants to live, to teach, to be, to love.  I am in awe of Will's profound grace as he faces his life's supreme test.

Will's reaction is creating a positive feedback.  His attitude has endeared him to the care team, so they in turn are not just caring for him as a patient, but as a person.  Knowing that Will remains strong in spirit gives me energy to also remain strong, so that I can continue to support him.  Yet Will's condition remains fragile, and he needs rest as surely as he needs support from friends and family.  The work that Will's body is doing to heal is grueling; the physical and psychological hurdles he has to clear constantly are formidable; the routine of the ICU is punishing.  Please continue to send Will your best wishes, as they are helping him to persevere.

I feel that there is more to write, but I must return to Will's bedside.  Know that your good energy is supporting him, and me, so keep that energy flowing.  Thank you.

- Tom L.