Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 4, 2002

BMT + 32

Robert has been fairly comfortable in PICU and he seems to be breathing easier on the ventilator (not that he is breathing for himself yet). He had a bronchoscope and the cultures from that are still out. We are waiting to hear if his problems were caused by an infection in his lungs. In the early afternoon today, Robert had an EEG to check his neurological function. The results were negative, meaning his brain function seems fine.

As we analyze why Robert stop breathing, we think it was a culmination of many things going wrong at once. When Robert developed ARDS (a dreaded lung disease) he was in a cast and could not take deep breaths using his stomach muscles. We believe the same thing happened. Robert was overloaded with fluids; his pain medication was increased by more than 50% that day and he had been breathing twice as fast as normal for over two weeks. We think his body just couldn’t keep up anymore.

In the ICU, we are there 24/7 (no sleep for the weary). Mark and I take shifts during the night. The nurses tease us and call it parent shift change and we tell them they have to leave while we complete our rounds.

We are afraid Robert may pull out his ventilator tube if we do not keep a close eye on him. We try to keep Robert’s hands full by trying to close each hand around one of his Will Smith.

We have felt a real sense of unity from our families and our friends. Thanks for being there for us. And the medical community has been showing their support also; Robert’s favorite nurses and doctors have all visited the PICU to see Robert in the last few days.

Counts