long days in hospital

It was a rough day, but I still feel as though James is genuinely doing a lot better, or in the least, making improvements almost every day. The nausea and vomiting comes in waves. We truly have no choice but to function one day at a time, or rather from one hour to the next. A very positive morning can be followed by a miserable afternoon, and nauseous morning can be followed by a lovely afternoon. 

Today, James woke with another nausea and vomiting episode, and with hopes that it would subside by the afternoon. Unfortunately, a second wave arrived in time for physiotherapy, and James spent the rest of the afternoon curled up in a ball and hugging a basin (with his wife by his side to rub his back and cuddle him). 

A lot of the frustrations comes with the uncertainties, and of course, a lack of known cause for these episodes. It seems to correlate with James' low lung function, and often follows several days of (relatively) good eating. It is possible that his body simply cannot handle digestion at this point. It requires more energy than is available, because the majority of James' energy requirements go towards breathing. He has no appetite and no interest in food or eating. He motivates himself to eat out of necessity, but the difficulties remain.

We ended the day on a positive note with an escape from his bedroom to the hospital lobby. We played a game of Settlers of Catan, shared a few laughs, and were able to create our own space together (in separation from the disease). I can't even begin to express the value of these moments. Our time is more previous than ever before (and that includes all the difficult moments too).  

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