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

update

We made it through the long weekend without significant issues or changes. James remains as stable as possible. The long days in the ICU have become weeks and months. We are painfully aware of the passage of time (and the increasing risk of complications). We are forced to have end of life conversations of a different nature. James may not survive transplant. This is not the reality we chose to focus on, but it cannot ignore it either. 

There have been several transplants in the last week (including several lungs over the long weekend). We celebrate with our transplant "family" these incredible successes. We also feel the sadness of our wait.

James' days continue to be structured by physiotherapy. He is still able to do between five to seven minutes on the treadmill. He is improving in strength and endurance. He can now stand up with minimal assistance, and remain standing for a few minutes with support. He sits in a chair for four to five hours, and will dedicate time in the afternoons to more physiotherapy with arm and leg weights. I am incredibly proud of his commitment to his health. It is really impressive at this delicate stage. 

We have to really push ourselves to remain positive and focus on gratitude. This is a lot harder in practice, and is becoming harder as the wait continues to wear on our spirits. We need to believe transplant will be soon (without defining "soon"). 

What are we grateful for? 

We are grateful for access to universal health care. 
We are grateful for advances in medical science.
We are grateful that James is alive and awake. 
We are grateful that James can communicate.
We are grateful that James and I can laugh together.
We are grateful that James and I can smile together.
We are grateful for evening cuddles in James' hospital bed.
We are grateful for organ donation.
We are grateful for hope.

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.

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.

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.

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.

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.

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.