Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 10, 2002

BMT + 38

Robert is still on the ventilator. He passed the lung test to be extubated, but since he had unusually high cerebrospinal fluid pressure yesterday during a spinal tap to look for infection, he will get an MRI today. The doctors want to leave Robert on the ventilator for the MRI. He does not have any indications in his optic nerve of high cerebrospinal fluid pressure, so the measurement may have been anomalous. The good news is there are no signs of infection in his brain or his spine, either from the spinal tap or from the CRT scan. If the MRI is negative, Robert will probably come off the ventilator today. (He’d really appreciate that).

Robert’s bilirubin is up slightly, and the GGT is up significantly today. This could be a sign of GVH flare-up, or could be due to other factors. We’d rather see the numbers going down, but we’re hopeful that this is temporary.

Best regards,

Mark

Counts