Wednesday, January 2, 2013

hospital update, again.

This would be the second post of the day. The first post was actually a scheduled post to acknowledge our six months anniversary, because it is important to celebrate the months these days. It may seem unnecessary (and silly, to some extent), but I am reminded of being post-transplant. At first, James counted the days. This slowly became weeks and months, and eventually, a year. o, how wonderful is was to be 1 year post-transplant. As James' health started to decline again, James and I returned to counting months and weeks post-transplant. This was not a conscious decision. We find reasons to celebrate, because James and I need these small victories to note the passage of time. Our world moves at a slow pace. Our lives are on hold. It is not easy to wait for transplant. These celebrations remind us to focus on living (rather than the alternative). We continue to move forward. It is essential to our survival. 

James seems to be genuinely recovering from this nausea and vomiting episode. We requested a combination of dextrose and saline to give James some energy (instead of the normal saline that has been hydrating him for the last few days). It seems to have made a difference. James has been able to keep down clear liquids and is ready to try solids for dinner tonight. 

A referral for total parenteral nutrition is also in the works, because James' weight loss is substantial enough to be a cause for concern. This is a frustrating and painful decision, because James works really hard to maintain his weight with 3000 to 3500 calories a day (and that is without supplemental nutritional shakes or beverages). In the first year post-transplant, James gained from 88lbs to 133lbs. It hurts to watch that weight disappear, but it can take up to a week (or longer) for James' eating to normalize post-hospitalizations, and with inpatient stays almost every two to three weeks, James is at risk of becoming malnourished. He is already clinically underweight and it really has become nearly impossible for him to recover lost weight from frequent hospitalizations. This is not for lack of effort. His body expends a lot of energy simply to breathe, and digestion requires even more energy to gain any benefit at all from his diet. We will do everything that we need for him to be as healthy as possible for transplant and post-transplant recovery. 

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