Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 7, 2002

BMT + 35

Robert is still on the ventilator; but his lung function is improving, and he may be taken off the machine in the next day or so. His digestive tract is in much better shape, and he is getting some nutrition through a feeding tube. (Up his nose and into his stomach; not my idea of a gourmet meal). He had a very restful day and night the last 24 hours, but he is beginning to get fevers again. The source of the fever is not clear, but he is getting plenty of antibiotics in case of infection.

Robert’s bilirubin is still high, and GGT is up today. Although this might be a symptom of some flare-up of his GVHD, the doctors are not that worried because his skin still looks good, and his kidneys are working fine. It is probable that bilirubin and GGT will not improve for some time until the liver is in better shape and Robert is eating normally.

Please add another person to your prayers today. A girl named Chantille is in the next room here in the ICU; she is also a pediatric bone marrow transplant patient, and she is much more ill than Robert.

Thank you.

Mark

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