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.

feeling the grief

I finally allowed myself to fall apart this morning. The tears would not stop for hours. There was no one to comfort me, but in truth, I don't think I would have allowed for comfort. I needed to feel the extent of my grief and pain. I had to give myself permission to feel. The person I need the most is in the ICU on two different types of life support awaiting a life-saving transplant. There are no certainties in medicine, but I must force myself to hold onto a hypothetical hope. My faith must arise from an inner strength, but again, I rely on a hypothetical of sorts. I understand the realities of our circumstance, and it is impossible to lie to myself. Every moment together can feel both dire and precious (all at the same time). We still have our love, but it does not ease the fears. I could hold James' hands forever in search of reassurance. I am calm in nearness, but I still have to go home at night.

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.

back on the list

James is back on the transplant list. We are very excited to share this news with all of you. Our positive news does come with a precaution. There are high risks associated with re-transplant, and it is essential to maintain that precious risks versus benefits balance. James is no longer on hold for transplant, but the decision with be re-evaluated on a day to day basis, because of the additional risks of being in the ICU (i.e. further deterioration). We are excited to have a goal to works towards. There is motivation to keep fighting, but I am still feeling wary (and weary). There are no guarantees. We are still waiting for an appropriate and suitable donor match. It could take weeks (or precious months that James does not have to wait). Of course, there is always hope, and for now, a reason to celebrate (and not to mention, James' birthday tomorrow)!

In terms of health status, James is having low grade fevers again. His carbon dioxide levels are dangerously high. It is very scary, to say the least. He is often in and out of drowsiness and sates of confusion. There is minimal quality of life in the ICU. We talk a lot about the need to focus on gratitude, and to find hope in small improvements, and positive aspects of a miserable situation. We love being together, and the dream of a future together is our source of light and strength.

James can also be alert and engaged. He still has that incredible determination to build strength and endurance. He understands the importance of optimal health for transplant. He exercises with light weights, and will make an attempt at a seated pedal bicycle in the late afternoon. He has been able to go for a few steps here and there. We both beam with pride. James fights to the level of heroic measures. I am in awe.

back on the list

We have positive news! James is no longer on hold for transplant! I will try to post another update tonight.

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.

finding hope in the ICU

The tracheostomy has allowed for some improvements, but it cannot erase the fears. There is sheer terror is being unable to breathe. It is beyond the cognitive realm. James' anxiety is not within his control. There are no words to describe the pain of a loved one in distress. The feelings of helplessness are intense beyond expression. It is a deep sensation within the body, or rather, an constant ache and nausea. I grieve to the point of exhaustion. I feel weak in my efforts to calm and comfort.

I bare the weight of all these emotions with gratitude for the ability to feel. I hurt, but I am alive. My husband is alive. I find the strength to fight by my husband's side. We never have to be alone in the presence of one another. We hold hands. We hold each other. We are together.

James and I must also hold onto hope for transplant. There is always something to feel hopeful about. We can hope for a quality of life. We can hope for shared moments of peace and quiet. We can hope for a few hours of sleep. We feel the same about gratitude. We are so very grateful for every single day to share together. We can look upon each. We can communicate. We can share affections. These are all reasons for gratitude.

James appears to be on the mends. The progress is slow, but James' fevers have subsided for now. There is still a long way to go. James is still septic. James still has pneumonia. His carbon dioxide levels are also still high enough to be a cause for concern. His tachycardia (high heart rate) and hypertension (high blood pressure) are within the normal range at rest, but it can take hours to recover from even slight exertion.

We can no longer function one day at a time. Our lives are from one moment to the next. We have seen everything change in a moment. There is no rest. We are always aware.

healing with sleep

My husband no longer has a tube down his throat. I can see his beautiful face. I can cherish each and every kiss on his lips. He can mouth, "I love, love, love you" (over and over again). We can share words of strength and gratitude on paper. I long to hear his voice again, and I yearn to hold him next to me. For now, I will live in each and every sweet smile, and shining glance of shared love. We are strongest together.

James was calm for most of the day with vital signs within the normal range. He slept for a large percentage of the day. It is essential to listen to his body and allow it to heal. His request for better pain management came with the side effect of drowsiness, but again, James must honour his needs. He searches for my eyes with each waking, and greets me with a squeeze of the hand, and a reassuring smile. He has also been listening to music as a distraction, and has even played a few games on the iPad. James still experiences anxiety and panic with the breathlessness of movement or exertion. I remain as a calming presence to ease his fears. I can never be far from his side.

Weekends are slow in the hospital. We embrace the pace with gentle patience for the passage of time. James' nurse has been kind and loving. She helped to wash his hair for the first time in weeks. She took special care to ensure his comforts. We are grateful for the genuine care in a sterile environment.