Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 6, 2002

BMT + 34

Robert is receiving a lot of sedatives to keep him quiet. When he wakes up, the ventilator tube upsets him and he thrashes around. The fear is that he may pull the tube out. It is also hard to see him in that much distress; his poor face tightens up all over and yellow tears (from the bilirubin) leak out of the corners of his eyes. His chest also has a kind of echo sound from the junk that collects in the tube. This means his tube needs to be suctioned to get the junk forming at the bottom of the tube out of his system.

They have started to turn down his respiratory rate, down to 17 breaths a minute. He is breathing about 40 breaths a minute. This means that he is having to breath a lot on his own. When the respirator was doing all the work he was breathing about 30 breaths a minute and when he was breathing on his own without the respirator he was taking about 60 breaths a minute. He definitely has to work harder. Our concern is that he needs to get his liver and kidneys smaller to give his lungs more room so that they can take more full breaths. Today, Dr. Matthey told Mark that Robert’s liver felt a little smaller. I know that the medical team is trying to balance everything at once; getting Robert weaned off the ventilator, hoping his organs lose some of their swelling and become more normal in function and that the fluid weight gain will dissipate. Let’s pray that all those things can happen soon.

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