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

crisis

We are becoming experts on handling crisis (after crisis). Everything can change in an instant. Everything does change in an instant.

Yesterday, James' tracheostomy site was changed as part of routine maintenance. James was given sedation for the procedure. I watched his oxygen saturation levels decline and his breathing slow down. It was very frightening to watch James stop breathing, and I became faint. He was placed back on a ventilator for a couple of hours to support his breathing. I was taken to a quiet room, and woke a few hours later as James was coming out of sedation. He was very scared to wake to the force of the ventilator breathing for him. I held his hand with that familiar feeling of helplessness. James was soon alert enough to breathe on his own and return to oxygen support on the tracheostomy mask. The team was exceptional. I am grateful for the level of expertise and incredible care.

Tonight, I held James' hand once again for reassurance and calm. (James also held my hand in return of that same reassurance and calm). The phone rang late in the evening, and I learned that James' ECMO circuit was in failure. The circuit would require replacement. The primary functions of James' ECMO circuit are to remove carbon dioxide from the blood and for oxygenation of the blood. The blood circulates through the circuit based on a prescribed rate of flow. There was no longer a functioning flow. James was in danger of life-threatening complications.

I was allowed to remain in James' room for the procedure. James would remain awake with minimal sedation. There were two attempts to replace the circuit. These attempts were unsuccessful. There was a fury of action in and around the room. It was possible that James would require a return to the OR. This was the definition of crisis. We both felt an intense fear with the presence of tension in the room. I was trembling by James' side. We were fighting against time.

At this point, I have been made to leave James' room. James has lost a lot of blood and will require blood transfusions. The entire cannulation will require replacement. James will be put to sleep, and back on a ventilator to support his breathing again. I now sit alone in the ICU waiting room and wait for the phone to ring again. I can feel my heart pounding in my chest. I don't imagine that sleep will come easily tonight.

The wait for transplant continues to be a painful process. We have both become vulnerable in many respects. We go through the motions of the day with hope and optimism for a different future, but it doesn't prevent the realities of our circumstance. James has end-stage lung disease. He will not survive without a transplant. We are very aware that his stability has become relative to the moment. We cannot take a single of those moments for granted.

Edit: My apologies for my lack of articulation tonight. The ECMO cannulation replacement was successful. James is very pale. He will require further transfusions. I am wide awake with these realities of waiting for transplant, but also grateful for exceptional care.

ECMO clot

We made it through the rest of Saturday without further issues. The bleeding at James' suture site has subsided, but not without a cost. We have been very fortunate that James' ECMO circuit has been clear from clots. This is rare for a patient on ECMO for this length of time. A clot has now formed as a result of those few hours without Heparin (blood thinner) to allow the sutures to heal. The clot will require close monitoring for growth and movement, but it should not impact the flow or function of the circuit. James is now back on Heparin with the hope is that the clot will slowly dissolve with time.

Clots are very common at this stage, but it is difficult not to feel concern. Reassurance doesn't soothe the intensity of our emotions. We make an attempt to let go of worries that are beyond our control, but fear is a constant shadow. It is hard to accept this level of helplessness.

James has been relatively stable. This seems to increase the magnitude for concern, or at least, our perception of the magnitude for concern, with each change in health status. I am able to recognIze on a rational level that circuit clots are not a major issue, but it is hard to reconcile that with the level of fear that I experience at an emotional level. Everything feels unpredictable, and to some extent, there are no certainties. We witness the realities of the ICU on a daily basis. It forces us to be painfully honest about our time together. It makes it harder to smile and laugh, but also makes smiling and laughter that much more important. It is a strange, almost paradoxical, experience. Our lives are on hold indefinitely, but everything can change in an instant.

I cannot end this blog post without a remembrance and acknowledgement of another death in the transplant community. My heart aches for this warm and loving family. We have witnessed too many deaths on the transplant list. This gentle and sweet man had become too ill for transplant. The wait was too long. He did not make it. No one should die waiting for transplant. Please, check your donor status, and talk to your family and friends.

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. 

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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.

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.