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.

tracheostomy

James has been pleading with the doctors to extubate him for several days. He was finding it impossible to cope with the discomforts and fears associated with a tube down his throat. All efforts to bring him a sense of calm had come with failure. The sensation of breathlessness is one of incredible fear and terror. There has been no relief in pill form (or relaxation techniques that require focus).

James' reprieve came in the form of a tracheostomy. It was a fast procedure, and it had an immediate impact. James' vital signs are within a normal range for the first time in more than a week. He is a lot more comfortable. He is a lot more calm. He is able to smile at me, and mouth words, or in the least, those all so important sweet words of love for one another. I read to him from a book of Pablo Neruda love poems, and James closes his eyes, squeezes my hands, and with no panic, takes deep breaths (with the support of the ventilator).

He also confronted another major challenge today: James walked a couple steps (with a lot of physical support) for the first time in more than a week. The best part was being able to wrap my arms around him, and feel James reciprocate. The hug brought me to tears. I crave that warmth alone at night. There are no more words.

fighting for his life

James' birthday will be in just over a week. We thought we would be celebrating in the hospital. We never imagined it would be like this. We don't only want lungs. We need lungs. We need lungs now. The wait is harder than ever before. Every minute is longer than the next. The thought of being on hold for transplant is terrifying, but I know that James has to be strong enough for the operation. The fungal infection in his lungs and bacterial infection in his blood are serious enough to threaten his survival. We have to hold onto every hope that James can fight these infections, and become active on the transplant list again. At that point, it will be a matter of finding the right set of lungs. It will be an immediate need.

It was a very hard day for James. The sheer terror of intubation (and everything that it represents) is a source of constant fear and anxiety for him. It impedes the possibility of progress towards extubation. Every moment of breathlessness leaves him shaking and in tears. He convinces himself that he is dying. He cries for me. He pleads for sedation. We did a trial extubation, in hopes of calming James' fears, but within less than thirty minutes, James' carbon dioxide increased dramatically, and James was forced to endure a second intubation. The trauma is impossible to describe. This is a pain worse than the depth of my darkest depressions. It is hard to envision an end to this hurt amidst the intensity of these moments, but I know, in my heart of hearts, that James has a lot of fight left in him. He has incredible strength. There is still hope.

update

A short note: James is making small and steady progress. The infection is in his blood and lungs. He no longer has a fever, but carbon dioxide levels remain high. He is a little more alert, and able to write notes. He is very scared and confused. He has no memories of the last few days. He has been placed on hold (or made inactive) on the transplant list. He is not stable enough for transplant. My grief and pain are too unbearable to write about.

We are very grateful for the outpouring of love and support. Thank you for all your prayers. We feel the warmth. We feel the love. We cannot respond to all the messages right now, but I read every message, and I know that we are in your thoughts.

love, love, and more love.

my love

ICU

It was an impossibly long day.  

There were false assurances: We were told in the morning that the situation was not critical. 

There was miscommunication (and lack of communication): James' rapid progression did not allow for proper explanations to prepare James or set up outcome expectations. We were not told of the plan to intubate within the hour.

There was one crisis following another. The discovery of an infection by CT scan was followed by a bronchoscopy to determine the type of an infection. He could not recover his breath from the procedure. An arterial blood gas found increasing carbon dioxide in James' lungs. James progressed from bipap support to intubation on a ventilator within the span of an hour. There was no time to process the change.

James has a serious infection. The type and extent of infection is still not known. He is being treated with broad spectrum antibiotics and anti-fungal medication for now. He is sedated to allow his body the rest that it desperately needs (and deserves).

We had been advocating for days. We knew something was seriously wrong. We didn't feel heard. It took a life threatening crisis. At least, James is now comfortable. He does not need to fight for each and every breath.

James could no longer breathe on his own. James can no longer breathe on his own.

I have not been able to sleep. It will be another long day.

I am forever grateful for all your continuous love and support. We really appreciate your prayers. Thank you, dear friends. 

love, love, and more love.

ICU

James is intubated on a ventilator in the ICU. It all changed drastically and very fast. The details are less important right now. Please continue to pray for him.

adventures in the ICU

James' tachycardia continued throughout the day yesterday with the return of another low grade fever. In the afternoon, James made an attempt to go for a walk (with that determination that I am always writing about), but within a few steps, a wave of weakness overcame his intentions. He was completely breathless, with a racing heart, and doubled over in fear that his breath would not return.

The on-call team was called (again), because James had no relief from his breathlessness and elevated heart rate. A decision was finally made to transfer James to the ICU for close monitoring, at lest for the overnight period. Several attempts were made to lower his heart rate through hydration, magnesium, and an anti-anxiety medication, but it remained high in all its stubbornness and discomfort. A beta blocker finally lowered his heart rate late in the evening (and allowed rest to heal his exhaustion).

James' breathing difficulties have lingered into the morning. He cannot seem to get enough air into his lungs. The wheezing is constant with each breath. His oxygen requirements are on the rise again. The transplant team has been very reassuring that these progressions are not an indication of a deterioration, but James' distress is self-evident. His heart pounding in his chest has become an unbearable constant. He pleads in tears with the doctors to try everything and anything to relieve his symptoms. It is painful (to say the least), but James and I have faith in the team. This is not a critical situation. James' heart rate will improve, along with his spirits. We can get through this together.

That is all for now. I will continue to update in the coming days.

lung disease at its finest

James' fever is gone, and all of his cultures have come back clear. This is a significant relief. He has even been requesting food. We are certainly on the right track. His heart rate has been slightly elevated, but not enough to be a cause for concern. Unfortunately, it is uncomfortable for James, and can lead to a sense of breathlessness. He has started an anti-anxiety medication to hopefully help with the fears that are associated with difficulties breathing. 

It is hard to convey in words the realities of James' struggle to breathe. Everything has become difficult for him. He has lost a lot of his independence to lung disease. He cannot stand long enough to brush his teeth or wash his face. He cannot bend down to put on socks or shoes, or even pick up items from the floor. He is afraid to shower, and even going to the bathroom is a chore. A single trip to the washroom completely exhausts him, and leaves him ready to sleep for hours. I bought him ear plugs to help him cope with the volume in the hospital, but the sound of his own breathing scared him. This is the reason that I couldn't sleep at night. I would wake to check on him, and look for the rise and fall of his chest. There is no peacefulness to his sleep.

I watch the progression of his disease with helplessness. James rarely complains, and is always open and honest about his fears, as well as his strength and hope. Sensitivity can make it hard to cope, but James embraces this part of himself. He feels the full intensity of his emotions, and this includes the positive feelings of gratitude, and a deep understanding of the value of life. He will never be done fighting. He loves being in this world, and all the coughing and wheezing in the world will never change that attitude, and a resolve to truly be alive. It is a lesson for the rest of us. It is about shifting perspectives and values. 

What are the real priorities in your life? Are you truly living? We all try to live without taking our world for granted, but it can be hard to do on a daily basis. James and I have no choice. We live in within a precarious balance. Our world is ripe with unpredictabilities and uncertainties. His relative stability of health is completely a function of his level of sickness. That is, at least in definition, but also in feeling, I believe. Everything seems to be determined by the extent of his illness (on any given day, or in any given moment). This is also in respect to his place on the transplant list. It is all dependent on a balance between "sick enough" and "too sick" for transplant. We don't want him to deteriorate further, or be listed as "rapidly deteriorating", but it is also painful to imagine this life for months on end, in wait of a single phone call.

reprieve

James was finally granted a well-deserved reprieve from nausea and vomiting. The doctors still have not determined a cause for these gastrointestinal episodes. This was definitely the worst episode in several respects, but mostly, in length. James' only rest from the nausea and vomiting was in intervals of Gravol-induced sleep. He earned the right to be completely miserable. 

He has become very weak from 10 days in bed, and will need to rebuild his strength and muscles. His blood oxygen saturation levels also seem to have decreased again, and it appears as though James will need another home oxygen assessment before discharge. (Discharge is a magical word that doesn't come up in conversation these days, but should eventually happen in the distant future. We are still waiting for B.C. to provide funding for home nutritional support). The nausea disappeared in time for James to acquire a fever this evening. This could be a sign of another infection, but it is too early to know more than that.

He was up and walking yesterday, but had a very difficult day today, with a racing heartrate that led to anxiety and a sense of breathlessness. He has a lot of fear these days, and it is difficult to comfort him. We know the realities of lung disease, and it is difficult to always be brave. That being said, James has a lot of strength left inside of him. We will not give up hope.

That's all for now. I'm exhausted beyond the point of exhaustion. Here is the love of my life in all his awesomeness:

 

dear organ donor

Dear Organ Donor and Organ Donor Family, 

There are not enough words to articulate our gratitude. How can I thank you for saving my husband's life? We will always be grateful for your generous and courageous decision during a time of incredible grief. We think about you each and every single day. You will forever be close to our hearts. We honor your memory in our every day life. We do not take a moment for granted. We live life to its fullest. 

We first wrote to you last year in February 2012. It was my husband's 28th birthday. It was a celebration of life. We would not have been able to celebrate without you. There was no other gift in the world better than to be able to celebrate another year together. We lit a candle for you, and your loved ones. We made a promise to honor you forever and always. 

My husband will be celebrating his 29th birthday in the coming weeks. We have not lost track of the preciousness of your gift, and your brave decision that allowed our future and dreams to become a reality. 

We are not allowed to share personal information with you, but I want to share the meaning behind your gift. My husband was diagnosed with a fatal lung disease at birth. There was no cure. Every single breath was a struggle. My husband was oxygen dependent for the two years before his transplant, and a double lung transplant was necessary for him to survive.

In the last year, I was able to marry the love of my life. It was a magical evening that was made possible by you. My husband was active for the first time in nearly a decade. We went bicycling, swimming, hiking, and even psuedo-camping on the family farm. We set up home together and made memories with friends and family. Our lives are filled with love and laughter. 

We are eternally grateful. We have not forgotten about you. Thank you for your gift. Thank you for the best year of our lives. We feel a deep love for you. We feel a special connection with you. 

May there be comfort and solace in the knowledge that you have saved my husband's life, and given him a quality of life not known to him. 

We love you. 

Thank you. 

Wife of Double Lung Recipient

hospital hair!

a post about hospital hair! well, some photos, at least. 

James has not had a haircut in months, and the weeks in hospital left his hair less than desirable. Showering takes a lot of energy, and is completely exhausting for James (and even with my help, and a shower chair, James is left shivering and breathless). ReadyBath claims to be a water-free shampoo and conditioner in cap form. We were weary at first, and James was tempted to research the chemical ingredients list, but decided it was worth a try. It comes with strict instructions to discard after use (with immediate disposal should it become dry). It left an odd gel-like film on James' hair, and thus, became the first and last time:

 

and today, James (finally) got a haircut in the hospital:

waiting for transplant

We have been in Toronto for five months now. James has been on the transplant list for three months. He has been in the hospital since December 25th (with a single day at home on December 28th in between admissions). This is his 6th or 7th hospital admission since arriving in Toronto. We are exhausted and drained of all energy and resources.

I want to write about the process of waiting for a double-lung transplant, but I don't know that I will be able to describe the experience.

We attempt to live our lives one day at a time, and focus on living in the moment. The speed of the surrounding world becomes incomprehensible. It is impossible to describe that feeling of watching the world move around you. Our lives are on hold. We are slowed to the pace of a single moment. We live in each and every breath, and for each and every breath. Everything may feel static, but nothing is static. It can all change without a warning sign. We persevere with hope, because there is no other choice. Transplant is the only alternative. We don't allow our mind to consider the other possibilities.

There is isolation. Our world becomes smaller and smaller. We build incredible friendships within the transplant communities. This eases some of the loneliness, but it comes with its own pain. We watch dear friends struggle for breath. We pray for everyone with the knowledge that not everyone will make it.

There is fear. The future is complete with uncertainties. It is impossible to make predictions. Each and every day can bring something different. We know the progression of the disease, but it is hard to prepare for deterioration. We lie to ourselves to counter the fear. This is for survival. It is all about attitude. 

There is a longing for something different. We struggle to imagine something different. We miss our lives. We miss ourselves. We miss each other. We are brought to tears by the smallest of memories; walking side by side and hand in hand, fall asleep back to back, and so forth.

One of the hardest part of the wait is the waiting itself. It could be days, weeks, or months. We all tell ourselves that our call will come soon. We are all aware that it could be a lot longer. We have to believe that our call will come in time. We have to believe that it will be the right set of lungs. We have to believe that it will be worth all this pain and sadness.

We find a hope and faith that we don't know had existence. We persevere through the hard days (and harder days). We wait, and wait, and wait.

p.s. I promise more photographs soon. 

love.
love.
love.