ICU emotions

It feels impossible to articulate the experience of living in the ICU on life support. We are overwhelmed with emotions of anger and sadness. We are brought to tears on a daily basis. We hold each other close. We hold each other tight. The environment is sterile in all sense of the word. We breath the stale air and contemplate the next moment. Each moment seems to grow in length with the ever-slowing passage of time. We talk about the future. We imagine the best and worst of outcomes. We focus our attention on gratitude. It doesn't change the situation. What does change? What is within our control? There doesn't seem to be a lot of room for movement. We feel trapped. There is only anticipation. We wait for the phone call. There are no guarantees. We only want a chance.

James' shortness of breath and anxiety are out of control again. He feels as though the walls are closing in on him. It becomes a negative cycle that spirals downward. We know transplant is close, but at this point, it seems to be distant future. We know that it is not within our control. We need to protect against the helplessness. It too easily lends itself to hopelessness.

I slept on a couch in the hospital waiting room last night to be close to James. My presence provided him with the comfort to sleep for the first time in a few nights, but I cannot continue to remain at the hospital all day and all night. It is a challenging balance between self-care and taking care of James. I need to find a way to also take are of myself, or I will fall apart.

James had a bedside swallowing assessment. He has been given permission to eat ice chips. He is still not allowed food or liquids. The ice chips will be a small consolation and comfort measure. It is a step forward from dipping mouth swabs in orange juice and Coke for the simple pleasure of taste.

Physiotherapy continues to structure our days. James goes on the treadmill for four to seven minutes during the week, in addition to arm and leg weights, and a pedal bicycle on the weekends. He also sits in a chair for four to five hours each day. We make an attempt to complete our days with distractions of games, books, and movies.

The wait continues to increase in difficulty. It seems endless. We find hope and joy through our love for each other, and a dream of a future together.

still waiting

We are still waiting for a double lung transplant. We had a really good consult with Palliative Care a few days ago. We are truly impressed with the level of specialization and dedication. James' quality of life is a definite priority. We want James to be as comfortable and calm as possible with end stage lung disease. It is difficult to prevent breathlessness (and the anxiety that accompanies the sensation), and with that, it is more about symptom management. The team has a lot of empathy for James. We are striving for transplant, but it is also important to prepare for alternative outcomes.

James' gastrointestinal distress has resolved for now (with feeds returned to a trickle). There are few options for nutritional support, and each comes with a level of risk. Total Parenteral Nutrition could result in infection and sepsis (again). Nasal Gastrointestinal feeds come with nausea and vomiting, and could result in aspiration. James would not survive either outcome. We do not have a choice. We simply have to remain positive and hopeful.

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.

love love love

I love to watch James sleep early in the morning, with sun beaming in through the windows, and a sense of peace and calm in the room. He is so beautiful at rest. There are not enough words to describe my love for James. He has brought wonderful changes into my life. I am a different person, because of James.

I hold his hands in the quiet, watch the flutter behind his closed eyes, and remember all the moments of shared joy together. I ignore the beeping of machines and the constant flow of oxygen, and replace the sounds with memories of lying in our tent to the tune of the forest, or sitting on the beach and listening to the waves.

We have a lifetime of experiences to hold onto from only a few short years together. We are bonded in the trauma of it all, but also, in the light that we create for each other and with each other. We have truly learned to make the most of each day. Even now, James and I do not pass a day without love and laughter. We talk of gratitude and appreciation. These shared affections are not an act of desperation. My hopes are almost always high in James' presence. There is reassurance in each enduring moment. I believe there has to be more. We need more time. We deserve more time.

There can be a lot of dissonance between knowledge and emotion. That is, I cannot ignore my rational brain and the intensities with of my emotions, but I really do have a desire for hope and faith. I believe that James has a chance, but I struggle with all the uncertainties. Nothing is predictable. I suppose that has always been the case.

I am learning that, in love, I am vulnerable, and for each and every day that I get to sit by James' side and admire his sweet smile, it is worth all the pain and all the hurt. I am grateful for James. I am grateful for perspective.

stable?

James' health is critical, but for now, James is also stable. What does stability mean in the ICU on life support? This is a contradiction. It is almost cruel to suggest that James is stable. It seems to deny the truth. That is, I am all too aware of the fact the James would not be alive without the support of ECMO. I write about his improvements, but I feel as though I am lying to myself. 

A dear friend, also in a precarious health situation with her post-transplant husband, knows exactly the sentiment: We are always awaiting the next critical shift. We sleep in wait for the phone to ring. We know that transplant is not a cure. Those illusions of post-transplant health are gone. It is an exchange of one set of problems for another (with the same potential for morbidity and mortality).

These are not the outcomes of discussion. We don't speak about the fatalities. We dance around with a language of hope and strength. I understand that this is essential for survival. We don't want to imagine the worse. We cannot allow ourselves to imagine the worse. At the same time, I think it is important to be honest and open (with ourselves, and with each other). We are in a serious situation.

dreams

We continue to open cards and packages. We are so touched by your kindness and generosity. We send you all love, love, and more love, but I know it will never be enough. You should see James glow with each card. It is wonderful to feel so loved in desperate times.

James has been on the tracheostomy mask for the last twenty four hours. This is a major accomplishment and step forward towards weaning from the ventilator. James could potentially be off the ventilator by the end of the week. He would still be dependent on ECMO (artificial lung), but it would greatly improve his quality of life. He would be able to eat and drink again (o, I cannot even begin to describe James' pleads of thirst). He would be more mobile, and better able to participate in physiotherapy. All of this is essential to optimize his health for transplant.

It is strange to write of these accomplishments. These improvements are all relative to the severity of the disease, and I am wary to paint a false projection of future possibilities. There is a constant shadow of truth: James is on the edge of survival. He will not survive without a transplant. It should not negate these steps forwards, but I am afraid to dream.

That being said, I still hold onto some parts of our dreams. I wrote a post many months ago about imagining a different future. We have come so far from then, and in some ways, I am actually more hopeful. I don't feel as though I have to let go of all of our dreams. With that, I am also in a very different space of acceptance.

I can see James and I moving forward post-transplant. I long to go on long bicycle rides, stopping to pick wild blackberries, and watch the neighbourhood deer forage for greens in our gardens. I can't wait to sleep under the stars again, while pseudo-camping on James' family farm, and wake to the sounds of peacocks screeching for no apparent reason other than the start of a new day. I want to cuddle in front of our fireplace while reading out poetry to one another and surrounded by our feline friends.

I just want to live. I just want to experience being in the world together (separate from a revolving hospital door). I suppose that is a lot to ask for.

These photos were taken by a dear friend, Heather Armstrong, on the day before James and I left Victoria. I will continue to share more in the coming days:

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.