exhaustion

James has been pushing himself to the point of complete exhaustion. He has been falling asleep earlier in the evening, and often, the afternoon, and sleeping in to late in the morning (and almost afternoon). Yesterday, James was only awake for four hours (and could barely keep his eyes open). We were not able to do a spontaneous breathing trial, because of James' exhaustion. There has been a trend of progressive fatigue throughout the ventilation weaning process. It takes an enormous amount of energy for him to breathe independent of the machine.

The team has made a decision to slow down the aggressive weaning process. James will return to pressure control settings overnight. The machine will breathe for him in his sleep. This will allow him to conserve energy in his sleep, and achieve some well-earned and well-deserved sleep. James will be able to build strength and endurance through participation in physiotherapy. As always, it is all about balance. We continue to move forward, but at a different pace. It is essential to listen to your body.

James has been meeting all of his goals for moving forward. It is all very promising and hopeful. It is with absolute joy that I share James' accomplishments. James is no longer on TPN. This was a major leap of faith for James. He is getting all of his nutritional needs met through nasogastric feeds (despite a long standing history of nausea and vomiting episodes in association with feeds). This eliminates the risk of sepsis from TPN. It also starts the process of redeveloping the function of his digestive system. (James has not had anything by mouth in almost six months). James is also weaning down on his narcotics (with slow and careful pain management). This will help improve the function of his digestive system, and allow for weaning from his extensive bowel routine.

James' participation in physiotherapy is also impressive. He walks the entire unit every morning, and in the afternoon, James independently takes on exercise. He stands every hour to stretch and do exercises from the treadmill room routine. He is able to stand without support and remain standing for several minutes. He also does arm weights and leg weights. He is even considering the pedal bicycle for the afternoons. That is motivation and determination at its best. He is doing his best, and I am so proud of him.

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.

another day over and done

We had a very positive day today. I'm insanely proud of James in every respect. 

We started the day with a warm tea and morning cuddles. James had been in and out of sleep for the last few hours. This is very common with various early morning intrusions of pokes and prods. The doctors arrived at a reasonable hour with a disappointing consensus that James will need to remain in the hospital for at least a few more days. Discharge discussions and decision-making seem to be on hold. It is essential to determine a long-term nutritional plan that takes into account James' variable daily intake and gastrointestinal issues, and includes Total Parenteral Nutrition (TPN) as a prime source of nutrition. Of course, out-of-province funding further complicates the situation. 

James woke slowly with his computer as a companion. I escaped for an hour with some very dear friends from within our ever-growing transplant "family". These social excursions ease the isolation of the transplant process. I allow laughter to replace the loneliness. We completely understand each other. I feel a level of embrace and acceptance that has always been foreign to me. My expressions of gratitude will never be enough here. We never have to feel alone. We never are alone. 

James walked to the Transplant Gym for the first time in months. That's right, James walked to the Transplant Gym. Can you see my grin? I am aglow. This is an incredible feat for someone with serious limitations of breathlessness and fatigue. A precedence has been set. I will have to get some streamers for his walker.

In the afternoon, James was relocated from his o-so-private room to a ward room in the company of three other patients. We made the immediate decision to escape the hospital. It was absolutely wonderful to be home with James for a few hours. Ophelia pranced around the apartment with a playfulness that could only be attributed to a complete happiness and joy at James' presence. (I refute all accusations of anthropomorphism). I made a chicken soup, and James relished in the comforts of home. It was a sweet reminder of the relative normalcy of our lives out of the hospital (and a bitter tease to return back to a loud and crowded hospital room). The room change is less than ideal, but James will continue to cope with the same incredible strength and endurance.

Did I mention that I was proud of him? 

James is a superhero. 

Well, it looks as though the transplant team may be making a liar out of me. The transplant team is advocating for James' discharge, because of the risks of remaining in hospital, including hospital-acquired pneumonia or other pathogens that roam these halls. The TPN team is responsible for the suggestion that James will remain in hospital for a few more weeks, but it seems as though there has not been communication between the two teams (in regard to James' discharge plan, that is). Wouldn't that be nice? It comes down to a risk versus benefits argument for keeping James in hospital. Do the benefits of remaining in the hospital for weight gain outweigh the risks that are associated with hospitalization and immunosuppression? It is a difficult question to answer, because James' nutritional status is an essential component of transplantation. The ideal solution would be discharge with an order for TPN at home. This remains unattainable without provincial coverage from British Columbia for extended care in the home environment. We cycle back to the beginning of the conversation. A decision will have to be made at some point. 

For now, James has rather limited mobility in the hospital, with an IV pole always by his side, and the dangers of leaving his room and contracting an infection. He sleeps a lot, and forces himself to eat between naps. I am concerned that James may become increasingly weak with muscle loss from remaining in bed all day. He has been going to the Transplant Gym three times a week, but that has its own limitations (and frustrations), because of James' muscle fatigue and his budding relationship with an IV pole. He still has that incredible determination to push himself through the essential parts of the exercise routine, but it may not be enough. The possibility of pulmonary rehabilitation was mentioned among the doctors today, but that too, has its own complications as an out-of-province patient. 

I've hit the late afternoon wall, and I am too exhausted to even complete sentences in my head. In short, James and I are coping as well as can be expected, and moving forward in most respects (or at least, in the areas of most importance). That's all for now. 

 love. love. love.

updates from the never-ending hospital stay

Today, James was the centre of attention to an audience of ten doctors. He certainly makes for an interesting case study in both Cystic Fibrosis and lung transplant. We learned that James may be in the hospital for a few more weeks. He is still holding out for hope that it could be only a week (or less, of course). The goal is to determine James' energy needs for weight gain through TPN. It could take a few weeks to slowly continue to increase the calories to that level and to transition from 24 hour feeds to 12 hour (overnight) feeds. There is some disappointment at the thought of remaining in hospital even a minute longer, but James is prepared to do everything necessary to optimize his health for transplant. This may also allow time for the hospital to contact the Ministry of Health in British Columbia to request funding for TPN at home. 

For now, James' lung health appears to be relatively stable and holding steady at 12%. He is maintaining his weight in the same range with some normal variation in both directions. He had a rough morning with the return of a short-lived bout of nausea and vomiting, but James has gotten comfortable hugging a basin with the knowledge that the discomfort is a temporary condition. Once the medications start to work, he is ready for his routine tea-sipping and cookies.

I packed up my bedside cot at the realization that it is not feasible for me to sleep at the hospital with James for weeks. We will both have to learn to sleep in the absence of one another. I know Ophelia will definitely not protest either the return of my company or the spare room in bed. She loves to sleep on a pillow by my head (and wake me in the night with kisses and kneading). 

I am feeling very grateful for my extended transplant "family" here at the hospital. I've always considered myself to be rather shy, and socially awkward, to some extent, but I have been embraced by a wonderful group of caring individuals. There is an immediate connection with a sense of reciprocal understanding that can only arise from shared circumstance and firsthand experiences. We come from a range of different backgrounds, but that doesn't seem to prevent the building of bonds. There is no reason to ever feel alone; spare those late night encounters with an irrational loneliness, that is. 

We are coping exactly as would be expected given the circumstances. (That is my standard response these days). Our exhaustion remains. There are days that perpetual fatigue can weigh heavily on our moods, but James and I rarely remain low for any length of time. We seem to balance each other out, and lift each other up during moments of need. There has always been a lot more laughter than tears between us. That being said, I think that teary nights allow for the intimacy of shared emotions. The hard moments serve as a reminder of our love and gratitude for an ever-present shoulder to cry on. Those difficult nights reinforce our promise to always be there for each other. We get each other through it all. We will continue to get each other through it all.

gratitude and acceptance (and hospital update, take three)

James is ever so patiently tolerating the hospital experience. The long nights in hospital can lend themselves to some negative thoughts and feelings, but James is always sunshine in the morning. We both tend to leave our fears to late at night. It seems that loneliness begs the attention of our deepest emotions and allows sadness to make an appearance. We can spare a few tears here and there, but James and I take these moments as reminders to spend the days in fun and laughter. 

I am learning a lot about acceptance. It allows me to move forward with a lot more confidence in the present and for the future. It is almost a form of faith. We do not allow our fears to control our decisions. We move forward together with a focus on everything that is within our control. We are doing everything right, both for ourselves, and for each other; by ourselves and together. 

I write a lot about gratitude. We find gratitude for the perspective of our circumstance, rather than for the limitations of our circumstance. We do not take for granted our time together. We can be honest with ourselves about the realities of transplant, and still close our eyes at night without regrets. We find value in the important aspects of our lives. I fall more and more in love with James each and every day. He wrote me a card with a similar profession. There is something special here to protect. 

As for a health update, James started total parenteral nutrition (TPN) last night for supplemental nutrition through his portacath. There is a relief in knowing that James' nutritional needs are being met. This is currently a short-term solution for during hospitalizations. James may not be able to obtain coverage for extended care at home, because of the cross-province health care agreement that only allows for out of province acute care, rather than in home care (or chronic care). This is frustrating for a number of different reasons, but for the most part, I feel it is essential to optimize James' health status (including nutrition status) for transplant. This should be a shared goal with the Transplant Team, but of course, I also understand that there are limited available health resources (and it is certainly not ideal for James to remain in hospital). The fact that these are unprecedented circumstances doesn't negate the need to address the issues. We will work with the social workers on finding a solution prior to discharge. I will never be done advocating for James. 

James also went to the Transplant Gym for physiotherapy in the afternoon (and showed off his fancy shmancy IV pole). He completely amazes me with his ability to push through the discomforts of being in hospital, and continue towards the goal of transplant. He did a series of stretches and strength exercises, along with ten minutes of cardiovascular exercise on a stationary bicycle. He was exhausted (and nursing a headache), but still managed to get through the basic workout. That's some serious determination. Let's also take into consideration the fact that James has been in a hospital bed since Christmas. I'm insanely proud of him. Can you tell?

hospital update, again.

This would be the second post of the day. The first post was actually a scheduled post to acknowledge our six months anniversary, because it is important to celebrate the months these days. It may seem unnecessary (and silly, to some extent), but I am reminded of being post-transplant. At first, James counted the days. This slowly became weeks and months, and eventually, a year. o, how wonderful is was to be 1 year post-transplant. As James' health started to decline again, James and I returned to counting months and weeks post-transplant. This was not a conscious decision. We find reasons to celebrate, because James and I need these small victories to note the passage of time. Our world moves at a slow pace. Our lives are on hold. It is not easy to wait for transplant. These celebrations remind us to focus on living (rather than the alternative). We continue to move forward. It is essential to our survival. 

James seems to be genuinely recovering from this nausea and vomiting episode. We requested a combination of dextrose and saline to give James some energy (instead of the normal saline that has been hydrating him for the last few days). It seems to have made a difference. James has been able to keep down clear liquids and is ready to try solids for dinner tonight. 

A referral for total parenteral nutrition is also in the works, because James' weight loss is substantial enough to be a cause for concern. This is a frustrating and painful decision, because James works really hard to maintain his weight with 3000 to 3500 calories a day (and that is without supplemental nutritional shakes or beverages). In the first year post-transplant, James gained from 88lbs to 133lbs. It hurts to watch that weight disappear, but it can take up to a week (or longer) for James' eating to normalize post-hospitalizations, and with inpatient stays almost every two to three weeks, James is at risk of becoming malnourished. He is already clinically underweight and it really has become nearly impossible for him to recover lost weight from frequent hospitalizations. This is not for lack of effort. His body expends a lot of energy simply to breathe, and digestion requires even more energy to gain any benefit at all from his diet. We will do everything that we need for him to be as healthy as possible for transplant and post-transplant recovery.