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.