the international society for mannosidosis & related diseases presents:
Robert's Road to Recovery: the second transplant

Kathleen's Diary: May 1, 2002

BMT + 29
 

Robert’s numbers looked good again today, except that his bilirubin was up to 16.3, a jump from 12.2. Robert’s GGT was slightly down from 297 to 265.  He seems tired today and very bloated.  Mark and his father, Fred, are concerned about Robert’s sodium levels; at 147 he is above the recommended high of 143.  He is retaining a lot of fluids in his tissues.   He is receiving albumin right now and then he will receive lasiz in order to pee out a lot of the liquids in his system.  Mark and Fred would like to see the sodium level drop down.  Hopefully Robert would be less thirsty and his body would stop retaining so much liquid.  It may also help his blood pressure which has been very high for the last 24 hours; running around 160/100.  If his blood pressure does not come down they will have to move us to the ICU to put Robert on a blood pressure medicine dripped through his line.  They cannot do that in the bone marrow unit.

Mark said Robert was pretty cheerful yesterday.  He was talkative and watched videos.  This is a good sign. The kids at home have been eating great with Grandma Jody in town, Grandma Rita and all the nice delivered packages of already prepared dinner.  They have hinted they were getting pretty tired of the same old things each night.  The variety coming through the door has been great for them and rough on the one who is staying in the hospital, eating hospital food every day.

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