Monday, January 28, 2013

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).  

3 comments:

  1. Keep strong ,lots of hugs. Prayers going out to you both.

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  2. There are only two ways to live your life. One is as though nothing is a miracle. The other ia as if everything is [Albert Einstein] I pray James gets his miracle very soon.

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