Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 12, 2002

BMT + 40

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).

We don’t yet have any results from the MRI. The good news is that there are no signs of infection or any obvious urgent problems. We probably need to wait for the neuroradiologist to interpret the MRI. Robert is not his normal self, we hope that it is only because of all the drugs and being ill. There is also good news on his liver functions (bilirubin and GGT), which are remaining stable. His kidneys are also working fine. I never thought we’d say this, but we’re looking forward to getting back into our room upstairs in the Bone Marrow Unit.

Best regards,

Mark

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