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.