holidays in the hospital

As many of you know from "James' Quest For Lungs" on Facebook, James spent a large portion of the holidays in the hospital. James' resilience remains as remarkable as always, along with a positive attitude to compliment his enduring (and seemingly infinite) optimism. He is always moving forward with complete acceptance of the recent past and readiness for the distant future. He finds the light in the hardest of moments and warms my heart with these sweet reminders. 

James and I spent a wonderful Christmas Eve with my father's family that was reminiscent of James' childhood memories. He relished in the joy of being surrounded by the comfort and warmth of family, and the constant demands of canine and feline affections. Unfortunately, James awoke Christmas coughing green and hugging a basin. We opened presents and stockings between ice packs, back rubs, and a competing pile of Kleenex to wrapping paper. He slept for a while on the couch to be near the family, but by the afternoon, James was feeling miserable. The on-call medical team gave recommendations to head towards the emergency department back in Toronto for a highly probable admission on Christmas day. 

In all honesty, I was disheartened. I have the previous experiences to know that lung disease does not take a holiday, but I continue to hold out for hope of a different future. James was promptly admitted onto the transplant floor and given the luxury of a private room for those on isolation precautions. A few days later, James was discharged from the hospital, and back at home to snuggle in bed with me. It was then that James turns to me, and with all the reassurance in the world, remarks, "You know, I really did have a nice Christmas." That, right there, is James. He can always find the light (and without the need for conscious effort). 

The following day, James was re-admitted through the ER by ambulance. It had taken almost thirty minutes and the kindness of strangers to get James home from the hospital in his wheelchair a few days earlier, because of escalating snowbanks and uncleared sidewalks. We couldn't venture across the street to the ER alone without a personal shovel or wheelchair snowplow. We wouldn't have made it very far, and James needed some immediate attention. The paramedics were exceptional. We truly appreciate the generosity of simple kindness.

James was given a quiet and dark room to find some comfort and sleep. We were pleased to learn that his lungs remain clear from infection and fluids. The gastrointestinal concerns are similar to the past: a form of pseudo-blockage that is common in Cystic Fibrosis. James has had previous repeat episodes that seem to accompany his low lung function and weight status. This is an unpleasant, but familiar path. We will be able to wade through together.

That's all for now. I will continue to update. Thank you to everyone for your prayers and warm thoughts. We feel so grateful and humbled by all of your love. (Our wall of love continues to grow back at home. You can message us here or on Facebook for our address to contribute). Please continue to share our story to help spread the word about the importance of organ and tissue donation.

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

Chanukah

It would be impossible to not love that smile. 

James has been out of the hospital for two weeks and is feeling stronger and stronger each and every day. We seemed to have found a resolution for James' gastrointestinal issues, and James has been able to return to eating as a full-time job. His white cell counts are back within an acceptable range for immunosuppression, but James is still mostly housebound (aside from appointments at the hospital and physiotherapy at the Transplant Gym) to reduce the risk of infection. We are really looking forward to Christmas at my father's house. We need to take as many precautions as possible to remain healthy for the holidays.

We celebrated the first night of Chanukah over this past weekend (and will have another Chanukah party on Saturday). We have plenty of leftovers, and the house still smells of latkas from the weekend (and other fried deliciousness from the holiday). We played driedel for candies with my siblings, and sang traditional Chanukah songs. We have been lighting the candles each night before dinner. My Bubie has been close at mind and in our hearts. She would have been the first to sing and dance, and of course, to burn the latkas.

James' mother sent some lovely Christmas ornaments from James' childhood for our little apartment tree. Unfortunately, Ophelia got to the tree this evening, and James and I returned home from grocery shopping to scene of pine needles and broken glass in every corner of the apartment. Ophelia was prancing around with pride at all the toys she had discovered on our tree. We will have to replace the tree with an artificial plant. It has fallen a few times prior to this incident, and with Ophelia's new found interest, I can't imagine it would remain upright for a lot longer. 

 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: