Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 2, 2002

BMT + 30

Robert is comfortable and stable in the Pediatric Intensive Care Unit (PICU) today. He had a very serious incident yesterday evening. After having increasing difficulty maintaining O2 saturation all day, he abruptly stopped breathing and had a short period of cardiac arrest before he was resuscitated. He was put on a breathing machine (intubated), and he is in stable condition in the PICU. He also had a seizure about three hours after being intubated. The seizure was controlled quickly with medication, and a CAT scan after the seizure did not show any obvious cranial bleeding or swelling. Therefore, the doctors don’t think he had a cerebral hemorrhage.

We don’t know the cause of either of the problems. The breathing difficulty may have been caused by a combination of high fluid volume from blood transfusions combined with high blood pressure, or it may be caused by infection. It is also possible, although unlikely, to be a drug reaction. The good news is neither the X-ray nor the bronchoscope showed signs of infection, although they have cultured his lungs to check for pathogens. The seizure may have been a delayed result of the cardiac arrest, or may be drug-related.

Right now, we are waiting to see if there are any infectious signs, and to see if Robert continues to do well on the ventilator. Once serious infection is ruled out, they will try to wean Robert off the ventilator and wake him up.

Keep up your good wishes and prayers.

Best regards,

Mark

Counts:

We did not get all the counts today because Robert was in the ICU. The good news was his bilirubin was down from 16.6 yesterday to 13.3 today.