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. 

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.

sick

I've been fighting a viral respiratory infection for the last week or so. It is nearly impossible to take care of James, while also managing to take care of myself, and prevent the spread of infection. I have been constantly wiping down all of the doorknobs and surfaces of the apartment, and washing my hands with the frequency of a compulsion. James has been making all efforts to help around the house within the limitations of his disease. My tolerance for being sick has its own limitations. I'm ready to return to my previous level of exhaustion and fatigue. I suppose it really is all about perspective.

We have had a few days without appointments, because I have not been well enough to take James to the Transplant Gym. Cooking, dishes, and laundry aside, I have been sleeping, sleeping, and sleeping. Unfortunately, I'm not feeling a lot better, and James has to return to the hospital for appointments. We head out early in the morning for James' weekly lab work and I will have to find the energy again this afternoon to head back to the hospital again for physiotherapy. I won't be able to stay in the Transplant Gym, because of my infection, but I will find a corner to sleep, set my alarm, and return to pick him up within an hour and a half.

I'm disappointed that I also won't be well enough to go to work tomorrow. I've been working as a behavioural therapist with a child with Autism Spectrum Disorders on Saturdays. It is a welcome break for both James and myself. James spends some time with a friend, and escapes into his computer for a few hours. For myself, I've always been incredibly independent, and the isolation of the transplant world has also mean a sense of identity loss. Our world has become smaller and smaller. Despite our best efforts, it can feel as though our lives revolve around Cystic Fibrosis and waiting (and waiting and waiting) for re-transplant. My Saturdays are an opportunity to re-engage with the part of myself that has drive and passion for working with children with special needs and disabilities. I'm working with a sweet child with a high dependency for a rigid routine and I feel guilty that my absence will also impact the child's day.

On a side note, our wall of love from family and friends has grown and grown to include a second wall. We are so grateful:

 

love love love

holidays away from home

We are getting ready for the holidays with the mixed emotions of love for the holiday season, and a longing to be back home with James' family, (and of course, curled up with feline friends in front of our fireplace). James insists that all he needs for the holidays is to be with me, but I also sense a sadness for the separation from his family. We are looking forward to receiving some of his childhood ornaments in the mail to bring some of his tradition to our temporary home. 

We will travel to my father's house for Christmas. He lives in a rural area close to Port Perry, Ontario, with several pets that will occupy James' every moment of attention during the holiday. We will still be surrounded by family, and the love and warmth that the holidays are meant to represent.

We will also celebrate Chanukah with my family in Toronto. The party will come to us, because my mother's house has several flights of stairs that would be completely inaccessible for James. We have many special and meaningful traditions. These have become more and more important over the years. The holidays come with comfort of memories. As with the last few holidays, I will feel the absence of my Bubie. She has been gone for almost 10 months, but in many ways, it could have been only a few weeks. There is not a single day that she doesn't cross my mind, and I feel that loss even stronger as the holidays approach without her around the table.

We have also been getting the apartment ready for the holidays, and bringing some of that festive cheer into our small space.

  

We bought a special ornament to represent the year of our marriage:

and another for the blending of traditions:

Our dear friends and family have also sent loving cards in the mail, along with a beautiful angel, and some delicate homemade snowflakes to bring the holiday spirit to our little home in Toronto:

surprise from home!

James' good friend arrived on Wednesday in the middle of the night from British Columbia to surprise him. James was (and is) absolutely thrilled to have a friend from home. Our spirits are lifted. We definitely needed a good distraction.

We will head to Toronto Islands in the afternoon. I will update again tonight, or tomorrow morning.

We are sending out love, love, and more love.

Update: We had a great day (and that would be an understatement). It is lovely to take a break from hospitals and focus solely on having fun. We were filled with laughter and energy. We will sleep well tonight, but it is the good kind of exhaustion.

Here are some wonderful photographs from the day by our friend, Kendell, yogi and photographer (http://meandher.smugmug.com/):

James and I are very grateful to have an increasing collection of photographs together, but I should admit that I have always been hesitant about being the subject of a photograph, and I prefer to hide behind the camera. That being said, I love to be able to document our time together into a permanent collection of shared moments. We also have another friend back in Victoria with an incredible talent for photography. She generously made herself available last minute to take a beautiful series of photographs before James and I had to move back to Toronto. We love all these photographs. We love our friends.