leaps and bounds

James' progress has been absolutely astonishing over the last few days. It is impossible to describe all the minute details, but I will do my best to convey these leaps and bounds. (We are moving mountains here). 

James is awake and alert enough to be able to communicate again. He is able to advocate for himself and become an active participant in his own care. He is re-developing a sense of autonomy and independence in his self-care. He is further re-gaining a sense of normalcy through the establishment of a structure and routine to his days. It really is an exceptional change. It represents movement forward on several different levels. 

James has shown improvements (along with great strength and resilience) in all areas of concern. He is no longer on sedation, and is staring another slow wean from long-standing analgesia. His respiratory status is back on track with post-transplant recovery expectations. He is tolerating lower levels of mechanical ventilation support for longer periods of time with each consecutive day. His kidneys and liver function are starting to show positive signs of recovery from early indications of potential failure. His fluid balance has been trending towards the negative, and relieving pressure on his lungs from fluid overload. His gastrointestinal distress remains, but without the same level of concern. The list goes on. The message is the same: We are trending in the right direction in all regards. 

The news gets even better. (There is always more sunshine). James achieved a major milestone this afternoon. James walked this afternoon. He walked a marathon after two weeks with minimal physiotherapy and movement. It was incredible. He nearly passed out from the short distance, and earned a well-deserved afternoon nap, but James still had motivation and energy for arm weights, and five hours in a chair. There are not enough words for "remarkable" here. Instead, I will leave you with love, love, and more love.

update (from my bed)

I have written before about the failures of language in attempts to articulate my love for James. It is also seems impossible to describe these intense emotional experiences of living on the edge of life and death. I have written about the endlessness of this waiting process, and the daunting uncertainties about the future. I have written about the overwhelming feelings of sadness and fear; a strange grieving process and a letting go, I suppose. I aim for catharsis in my writings, but I often feel short of words. It is not enough. It doesn't change the circumstance. There is always that sense of helplessness. I know that I need to focus on that which is within my control, but it doesn't come easily to me. I still feel lost in the unknowns. 

We no longer have an ebb and flow to our days. The days are structured by numbers that determine movement and change. It is as though James has become an object in a world of medicalization. I find some comforts in knowing the details of his medical status, but it can also be very painful. I am keenly aware of the extent of his illness. This will not be an easy or simple path to recovery and health. 

James' medical status is largely the same. There remain some serious concerns. We hope for improvement in the coming days, but James' complications are complex and on-going. The team can offer supportive care in all regards, but treatment options are limited to some extent. James has developed a very high tolerance to a lot of the analgesic and sedative medications. This creates a barrier to treatment and an additional layer of complication in finding the right balance and combination of medications for James' comfort and pain. There are also a lot of contradictions to consider, and James' kidney and liver status create another challenge in preventing further deterioration and decline.

The most recent development is possible sepsis. James developed a high fever overnight along with a spike in his white blood cell count. We are still waiting for blood and urine cultures to confirm this possible infection. He also had another bronchoscopy this afternoon to collect further cultures from his lungs (in the event that there is another source of infection). 

Unfortunately, I have been in bed for most of the afternoon in escape from light and sound. I suspect this migraine is a response to the stress of the morning at the hospital (and an accumulation of the last week of distress). James was awake for the first time in days (despite very high levels of sedation), but his presentation was of pain and discomfort. It is difficult to differentiate between moments of delirium, and moments of definite lucidity. He pleads with me, wide-eyed, in desperation and pain, and then disappears into an unresponsive state of being, eyes glazed-over, and grasping aimlessly into space.

I am fortunate that there are also endearing gestures of sweetness. James recognizes the sound of my voice, and a beautiful smile will make an appearance. My heart aches as James reaches out for me, squeezes my hand, and asks for kisses. I find a lot of reassurance in these moments. I miss these moments in his days of deep sedation. I need these daily reminders that James is still present. James is still here. James will continue to be here.

nurturance

There are no changes to report. James is fighting for his life, but James is still alive. James is still here. There is still a lot of fight left in him. His body will heal with time. I truly believe in my heart of hearts that James will recover. Yet, I ache in my sadness. I ache in my fears. I ache in my loneliness. The darkness has an unbearable weight. I am broken without James.

There is still room to care for James in his delicate state. I seek ways to nurture. I take gentle care to wash the salty residue from his skin and oil from his beautiful curls. I massage lotion into his palms. I rest a cool washcloth on his forehead, and wipe the sweat from his cheeks. I speak to him in a soft voice. I give voice to our hopes and dreams. I hope that James feels my love within his deep sleep. 

so far

We have come so far, and it is hard to look back, but it an important reminder of James' progress and improvement. We have a world of gratitude for the exceptional medical care at Toronto General Hospital, and for a loving and supportive community of family, friends, and strangers. We only want to move forward. (Click photographs to enlarge).

love, love, and more love

closing in

I want to write, but there are no words (or in the least, words that come easily to me). We go through the motions on a daily basis, follow a structured routine in a sterile environment, and hold onto remnants of hope. It is strange to accept this form of "normalcy". It has become increasingly hard to imagine that ever distant future together.

We live within the boundaries of this hospital room. These boundaries seems to extend to our dreams, creating a sense of limitations, or rather, a threat to our future together. How do I describe the sensation? The walls are closing in and there is not enough time in the world to make everything right again. It is a challenge to remain positive, and conceive of a different life. We haven't really had our chance. We have found a way to make the most out of our time, but it still does not seem to be enough. We want to live together in health without the constant shadow of death.

James' lung function took a steep decline on the day after our wedding. We were given permission to return home to British Columbia, and in that time, James and I started to nest together. We re-arranged furniture in the house, scrubbed the floors, cabinets, and walls, and weeded our way through the courtyard jungle. His lung function continued to decline at a rapid rate, and it was rare that James and I would pass a day without an appointment or test at the hospital. We insisted on creating a life for ourselves in Victoria. 

Every single day, James and I spent time in nature together. We went for picnics on the beach between appointments. We rode our bicycle through campus to find deer foraging on blackberries. We hiked along the water, and went swimming on Salt Spring Island. We went pseudo-camping on the family farm, and woke to the screeching of peacocks. We found a way to make the most of our time. It was still possible. It was still possible to focus solely on living, and on living together. 

This experience changes everything. James can no longer walk without extensive support, or stand long enough to shower or brush his teeth. It is difficult to finish a sentence without feeling short of breath and gasping for air. He struggles to breathe with all movement. He requires 100% oxygen support to turn to his side or shift his body weight in the bed. He is not able or allowed to move without the help of several nurses. His excess of tubing is clamped to the bed. He is stuck in the most literal sense. We are both stuck. It is no wonder that it can feel as though the walls are closing in.

How do we cope? How do we remain positive? We focus on hope for a live-saving and life-changing transplant. We focus on gratitude. There is a lot to be grateful for. We are grateful for access to exceptional health care. We are grateful for genuine care. We are grateful for family and friends. We are grateful for generosity and kindness. We are grateful for support and understanding. We are grateful for love. We are grateful for each other.

ICU ramblings

I wish I could describe the heaviness of these emotions. There are no longer days without tears. It is impossible to ignore the realities of our circumstance. James and I are living with the constant knowledge that these could be his last days. We witness the daily reminders all around in the ICU. There are empty beds and mourning families. There are alarming machines followed with a rush of movement around the unit. There are emergency codes over the loud speakers. We feel the changes of mood on the unit. It can become dark and sullen. These incidents remain strongest in our memories. We hold each other closer and whisper words of comfort and reassurance. We make a conscious effort to re-frame our thinking and shift our emotions. We need to cope. We need to survive. We need to focus on being alive.

Yesterday, James had his first "good" day of the week. What does that mean in the ICU? It means minimal pain and discomfort. It means being able to advocate for himself. It means having a voice and feeling heard. James was able to move from bed into a chair, and remain there for a large portion of the day. He was able to do physiotherapy with the pedal bicycle and arm weights. He was able to distract himself from the overwhelming stimulus of the environment, and focus on reading and computer games. He had moments of genuine smiles and laughter. He had moments of independence and autonomy. We were together in calm. We were together in love. We were together.

a day in the life

update

We made it through the long weekend without significant issues or changes. James remains as stable as possible. The long days in the ICU have become weeks and months. We are painfully aware of the passage of time (and the increasing risk of complications). We are forced to have end of life conversations of a different nature. James may not survive transplant. This is not the reality we chose to focus on, but it cannot ignore it either. 

There have been several transplants in the last week (including several lungs over the long weekend). We celebrate with our transplant "family" these incredible successes. We also feel the sadness of our wait.

James' days continue to be structured by physiotherapy. He is still able to do between five to seven minutes on the treadmill. He is improving in strength and endurance. He can now stand up with minimal assistance, and remain standing for a few minutes with support. He sits in a chair for four to five hours, and will dedicate time in the afternoons to more physiotherapy with arm and leg weights. I am incredibly proud of his commitment to his health. It is really impressive at this delicate stage. 

We have to really push ourselves to remain positive and focus on gratitude. This is a lot harder in practice, and is becoming harder as the wait continues to wear on our spirits. We need to believe transplant will be soon (without defining "soon"). 

What are we grateful for? 

We are grateful for access to universal health care. 
We are grateful for advances in medical science.
We are grateful that James is alive and awake. 
We are grateful that James can communicate.
We are grateful that James and I can laugh together.
We are grateful that James and I can smile together.
We are grateful for evening cuddles in James' hospital bed.
We are grateful for organ donation.
We are grateful for hope.

six weeks

The major challenge right now is remaining positive. James has been vomiting for three days with the increases to his feeds. The last episode of nausea and vomiting took almost two weeks to get under control. The cause of these episodes has never been known, but it is thought to be a pseudo-blockage in combination with severe delayed gastric emptying, and in relation to low lung function. James cannot handle any amount of volume in his digestive system. This was the reason for starting Total Parenteral Nutrition (TPN) a couple of months ago. TPN provides nutrition directly into James' bloodstream. The other feeds will be held for now, and most likely, re-started at a decreased rate.

James also had a very painful and uncomfortable bronchoscopy last week. The team took cultures from his lungs and have been able to confirm that James has another Pseudomonas infection. This provides an explanation for an increase in shortness of breath and thick secretions. James feels as though he is drowning in mucus. For the last few weeks, James has also been able to speak with a finger occlusion to his tracheostomy site. It has been wonderful to finally hear his voice again. Unfortunately, James is also finding it difficult to speak. He fears that the Bronchiolitis Obliterans will diminish his lung capacity, and he will either "drown in mucus" or "run out of air to breathe". These are very real fears, and I find it difficult to console, because I share the same fears. I know that James is as stable as possible, and I truly believe that the ECMO will keep him alive for transplant, but I suppose reason cannot always overcome emotion (especially in combination with stress and exhaustion).

We are finding it more and more difficult to find optimism for the future. James has now been in the hospital for three months (with six of those weeks in the ICU on life support). The ache and longing for home has become stronger with the changing of seasons. We had a dream of being back home in Victoria to nest together for the Spring in our lovely home. We only had six weeks together last summer before returning to Toronto for re-transplant. It was a very different six weeks than these last in the ICU.

We dream of our days together in the garden, and around the home with our feline friends. I would wake early in the mornings to weed before the sun (with the help and hinderance of our cats, of course). We would sip tea together in the courtyard, and James would share with me the beauty of Victoria. We would go to the beach between doctors appointments, and for late night hikes and bicycle rides after long days at the hospital. We didn't take a single day for granted, and truly made the most out of each and every day. I am grateful for the perspective, and James and I still value our time together more than anything else in the world. 

We felt as though those were the best and worst six weeks of our lives. We were truly living our best lives, but James' lung function was taking a sharp decline. We didn't believe that James had a lot of time left. We laughed and cried more than ever before. We never imagined that all this was possible. We had a very different dream.

We have now been back in Toronto for seven months. Our love and connection have grown in trial and strength, but the last six weeks have been wearing on our spirits. James has been living on the edge of death. He is being kept alive by machines with little to no quality of life. It is harder to laugh. It is harder to dream. It is harder to imagine something different. We have been each other's hope for the last few years. We have been each other's hope for the last few weeks. We desperately need a hope to hold onto, but it is not enough to love one another. 

We need a transplant. James needs a transplant.

What is there to write? James has been in the ICU for almost six weeks. He has been re-listed for transplant at the highest possible priority ("rapidly deteriorating"). The wait feels endless. Each day in the ICU comes with further risks.

He is less comfortable with an increase in thick secretions and shortness of breath. The team is considering another bronchoscopy, but a decision will not be made without further discussion. James reluctantly agreed to an increase in his feeds (with a longer term goal of discontinuing the Total Parenteral Nutrition). We are afraid of the return of James' nausea and vomiting episodes, but TPN has high infection risks, and it is essential to preserve the function of his digestive system. It is one concern after another.

I feel as though I could sleep for weeks. Sleep is my only reprieve. I take the afternoons with the intention of being productive, but I find myself in bed. (Ophelia always graces me with her presence. She loves afternoon cuddles). I never imagined that this level of exhaustion was even possible. It is certainly worth every single day with James, but I look forward to a return to our lives separate from disease and illness.

fighting hard

There are always small issues of of concern, but James continues to demonstrate strength and resilience. He has a lot of fight left in him. It is incredible to watch his body adapt to all these changes. The concerns do not linger long and are easily replaced with the next cause for concern. We don't worry to the same extent, because it is all beyond our control. We need to focus on that which is within our control. We rely on our trust in the team. James is receiving exceptional care. There is always something to find gratitude for (even though it can feel otherwise).

I feel the weight of my sadness. It is not the familiar darkness of depression, but an intense grief of uncertainties (for both the present and future). I have to ground myself in the moment, and prevent my mind from wandering between possibilities and outcomes. My exhaustion makes it difficult to write more. 

You can also get updates on Facebook.

I will leave you with some photographs:

(and some knits)

another day in the ICU

We are sick and tired of being sick and tired. We talk a lot about quality of life in the ICU. That is, a lack of quality of life. We are as positive as possible. We make the most out of our situation, but it doesn't seem to be enough to really lift our spirits. We still laugh every day, and I have managed to sneak into his bed for a cuddle here and there, but at the end of the day, I still have to go home, and James and I are left alone with our fears. It never gets easier to leave him. We are afraid to never see each other again, and it is not an unfounded fear. Guilt doesn't change the circumstance, and I need to be able to sleep at home, but I still feel nauseous each night. We really ache for each other in the dark of the night. It is harder to reassure ourselves without another calming voice or a hand to hold. The night seems to take advantage of our vulnerabilities.

In the evenings, James and I play games on the iPad. We watch shows on the computer. We avoid sleep and ignore the heaviness in our eyes. We stretch our time together as long as possible. At shift change, James and I can barely stay awake, and it is time to wish each other the sweetest of sweet dreams. We hesitate to steal a few more moments together. It would make leaving impossible. I am grateful for friends and family members to meet me outside this sterile environment, and get me through the final hours of the day. I crawl into bed looking forward to sleep, but my thoughts are always on James, alone in the hospital, with a long night ahead.

In terms of health, James is stable on life support awaiting transplant. We recognize that being "stable" in the ICU on ECMO holds a different meaning, but I think it is important to acknowledge. There is some level of comfort in the knowledge that James is doing as well as possible given the circumstances. Small achievements and improvements are grandiose on this scale. James no longer relies on the ventilator to breathe for him, and with that, James is given a a few hours each day to be able to speak. It is wonderful to hear his voice after a long month in the ICU. He also continues to make progress in physiotherapy on the treadmill, and with his weight exercises. This will help optimize his health for transplant, and contribute to the best possible outcome for post-transplant recovery.

sadness

I allow myself to feel the extent of my emotions, but the depth and intensity of these emotions translate into an exhaustion that is beyond the already constant fatigue. It makes it harder to move beyond the sadness (and the so-called negative cognitive bias of my depression). It is a conscious effort to focus on the positive. I consider the strength of our love for one another. I embrace the glow of our post-transplant friends. I imagine the possibilities for post-transplant health, and I remind myself of our hopes for a future together. It does not negate the sadness, but it allows for movement forward on these o so hard days of waiting for transplant. The wait feels different at this point. It feels critical and urgent, and I ache with a pain of uncertainties.

ECMO or ECLS (Artificial Lungs)

James is ready for transplant. He is building strength and endurance, and I have my own glow of pride for his drive and determination. He continues to make strides in physiotherapy on the treadmill and with arm and leg weights. He sits in a chair for several hours each day. James does everything within his abilities to maintain a positive resolve. There remain moments of acute anxiety and fear, but the tension does not linger beyond reassurance. There is safety in the presence of love, and I am grateful to be able to bring comfort and calm with warm hands and a smile of admiration.

I still arrive at the hospital to be James' morning sunshine. He is slow to rouse, but always with a light in his eyes. We create our own structure and routine within these endless days of waiting (and waiting). We sit quietly in light conversation or to a background of music. We play games on the iPad, and watch television on his computer. James reads in his bed, and I continue to contribute to an ever-growing collection of handmade knits. We are grateful for these moments of normalcy, but there is still a shadow of sadness in the knowledge that this has become our "normal". We are never alone. We are in constant wait.

morning calm

I continue to update, but in truth, there is not a lot to write. We are in a space of relative stability with some sense of calm. James is doing as well as possible given the circumstances. We recognize the gravity of the situation: James is being kept alive by machines. Everything can change in a second. We can never truly allow ourselves to rest or relax.

Nevertheless, I have moments of incredible gratitude. James is still here. He can laugh with me. He can communicate. He endures with motivation and strength. We have reasons for hope.

Nights remain very difficult for James with intense fears of death. He is afraid to close his eyes and never open them again. All the reassurance in the world does not seem to help. These are valid fears.

I arrive early in the morning to provide some comfort for both of us. I am always on the verge of tears in the mornings. I have an intense need to be with James (with the knowledge of his long and difficult nights, and my own longings). I look upon him, and feel an immediate reprieve from my own sense of panic. James curls up with his blanket, and allows himself to finally rest with some ease. I hold his hand in his sleep, or knit silently beside his bed.

We are together again in gratitude for one another. It seems that nearness is often enough to calm our beings. This must be part of the definition of love.

a few photos!

our chance

Thank you for all your cards and messages of hope and support. We continue to read the mail (both virtual and otherwise) with gratitude for all your love. I wish I could respond to every comment and message. Please know that James and I really appreciate each and every one of you. Thank you for surrounding us with love and lifting our spirits.

James is doing remarkably well for someone on two types of life support. He is slowly being weaned from the ventilator to full reliance on ECMO. He is now able to spend a large portion of the day on a tracheostomy mask (only for oxygen support rather than complete pressure control or pressure support). He participates in physiotherapy from Monday to Friday, and continues to impress the team with increasing intervals on the treadmill. All of his vital signs are within normal ranges. We are at the ideal stage for transplant.

James' strength is also in his attitude. James has a positive resolve with a pure motivation towards the goal of achieving transplant. He endures through the discomforts of pain and anxiety with incredible hope. He fights as though there is a single discourse and possible outcome. James doesn't allow the fears to overwhelm his being. I wish I could emulate his drive for survival. I wish I could prevent the wanderings of my heart and mind to different futures. I wish I could imagine the impossible. I do everything to remain hopeful about our future. We may never grow old together, but I want a chance to be together in health. We deserve a chance. That is enough to push forward.

realities of ICU

It is hard to continue to update. I want to write, but I don't always have the words to articulate these experiences of incredible pain. We are both terrified. We know that each day in the ICU could be a step further from transplant. Every day increases the risk of complications and spread of infections. James is strong, with strength of all forms, but there are indications that his body has its own threshold of fight and exhaustion.

I could write about medical details, and day to day changes in health status, but the trend continues to be in the direction of a single conclusion: James is fighting for his life. He is on two different types of life support. He has serious infections in his lungs. The rest of his organ systems are trying to compensate for lack of oxygen and high levels of carbon dioxide. We are at a frightening point of survival. We are no longer maintaining that precarious balance. We are at the height of failure. James needs a transplant. He needs lungs as soon as possible.

James' care has been genuine and exceptional (with a few incidences of anger and frustrations aside). The level of expertise and specialization offers some degree of reassurance and comfort. The medical science keeping James alive is within the range of miraculous. We are so grateful for access to advanced medical care. The ICU and Transplants Team have a lot of hope for James. There is a strong belief that James will survive long enough for transplant. It is a faith to hold onto in those o so difficult moments of tears.

I am doing everything I can to take care of myself and cope within the best of my abilities. The exhaustion is wearing and cumulative. I have been at the hospital all day and every day since Christmas. I try to take steps back, and find time for myself, but in truth, I want all the time that I can have with James. I nap in fear and take coffee breaks with guilt. I leave at the end of the day with nausea in my gut.

My love for James is stronger than ever. I look at him with admiration for his incredible strength and determination. James has a lot of fight left in him. He has been going on the treadmill for three minutes each day. That's right. James is on two types of life support, and with the support and aid of a dedicated team, James is partaking in physiotherapy to build and maintain his endurance and strength. I beam with pride for him.

birthday ECMO!

Happy Birthday James! We put up a banner, and covered James' room in birthday swag. (Thank you, Pamela, Carman, and Danica). James awoke with the best smile in the world. He was aglow with hope and optimism. We started the day with good spirits all around.

Unfortunately, it was another day of rapid changes. James' carbon dioxide levels were at a dangerous level. These levels were not declining with the help of ventilation, or with an attempt to clear the mucus from his lungs with a birthday bronchoscopy. Instead, James' levels rose further. An immediate decision was made: James would be in the next available Operating Room to be placed on ECMO. This extracorporeal artificial lung system would help bridge the gap for transplant, and support James' breathing process.

It was all very fast. We held each other close between tears and shared affections. James and I held hands with the strength of deep fears. James' mother, Kathy, and I watched James being rolled away into surgery with streaming tears and a nauseous ache. The risks of complications are rare, but serious. It wouldn't be long for tears of a different nature. The surgery was successful. James was safe. James is safe. We have many reasons to celebrate!

We are warmed by all the love encircling our family during this difficult time. We opened more than twenty-five cards with messages of hope and support (and I know there will be more next week). We will forever be grateful for your love. I wish I could hug you all. It means a lot to know that we are in your thoughts and prayers.

another update

A brief update: James' blood cultures (on antibiotics) are negative. This means that, for now, James is no longer septic. On the other hand, James' CT scan shows a worsening of the infection in his lungs. The lung cultures remain negative, but the Transplant Team is not comfortable re-activating James for transplant without more information about the infection in his lungs (based on the CT scan). He had another bronchoscopy to take more cultures. Palliative Care is working with the ICU to help James feel as comfortable as possible. We are so grateful for the genuine and loving care that James receives each and every day.

The Gulf Islands Driftwood has printed another article about James' transplant journey (and his critical need for immediate organ donation). The link can be found on the right of this page. I feel shy about the exposure. The blog feels intimate and personal (even though it is very public). I write for a lot of reasons. I write for the love of words and language, but I also write to document our memories and time together. I write, because it is cathartic, and it helps to process these overwhelming thoughts and emotions. I also think it is important to share our story. We are raising awareness about the importance of organ donation.

There are currently 1,500 people in Ontario waiting for a life saving transplant. One of these individuals will die every three days. One organ donor can save up to eight lives, and enhance the lives of up to 75 more. Think about it. Talk to your friends and families. Register online.

ICU days

A few weeks ago I wrote a post about long days in the hospital describing our days together on the transplant floor. I wrote about the slowing of time, and that constant sense of always waiting, and waiting, and waiting. The days remain long and slow, but in a very different way. There waiting is critical. The waiting is urgent. We don't have that time to wait.

It is truly terrifying to be on hold for transplant. James needs the time to heal, but he also needs a transplant as soon as possible. We are at the critical point of that precarious balance that I am always attempting to describe. The passage of time marks movement towards our goal of transplant, but all of that is dependent on James' ability to fight this infection. We cannot predict the outcome. We are forced to wait in fear that the slowing of time will never end. It really does feel endless at times.

I allow my body to wake at its own pace. I move around the apartment with a morning restlessness. My level of anxiety rises with the time it takes to gather myself and prepare for the day ahead. I run to the hospital in the morning in complete panic for no reason other than an incredible need to see my husband. I often arrive during shift change. The tears start to flow. The seconds are too long. When I am finally able to see him, I feel a wave of relief (and more tears beyond my control). I laugh at my emotions, and I squeeze his hands. We look at each other in stopped time. We are together again. There is joy in nearness.

I pull a chair beside his bed, put down the side rail, and snuggle as close as possible. We share morning affections and details of the night. I talk, and James writes. James wakes slowly, and is often confused in his wakings. He does not always remember the night, or even the previous days. He has vivid dreams that blur the boundaries of realities. He does his best to stay grounded in the moment. I help brush his teeth, wash his face, and partake in a morning routine of cleanliness. We engage every opportunity for shared intimacy, because of the need for closeness.

Waiting starts the day, and waiting defines the day. We wait to been seen by the Transplant Team. We wait to be seen by the ICU Team. We wait for Physical Therapy. We wait for Respiratory Therapy. We often speak with the Palliative Care Team, Social Worker, and Spiritual Care Worker. A psychiatrist will also make an appearance. We may even meet with our Transplant Coordinator. The excitement continues with scheduled tests, blood draws, pokes and prods, and an incessant beeping of machines. It is remarkable that time can be so seemingly slow with constant stimulation in all directions.

At some point in the morning, James will be moved to a chair. This minimal level of activity is essential for his muscles and strength. This exercise allows for chest expansion, and forces his lungs to continue to breathe (with the support of the ventilator, of course). We hope to be able to advance to walking a few steps, but it may take a while for James to get there. There are many challenges and barriers, including breathlessness, muscle weakness, and fatigue.

We both feel the weight of our eyelids by the afternoon. James falls into a deep sleep, and I escape to the waiting room to eat, and often, to fall asleep. My family and friends come with food. They come to sit. They come to support. I move through the day and I go through the motions (and emotions). I feel a range of intensities between each change in James' state. He is not stable enough to ever completely allow for rest. I am hesitant to leave his room and close my eyes. There is pain in the separation, because of the level of uncertainties. It is difficult to describe.