Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 15, 2002

BMT + 13

Robert started the anti-fungal medicine, amphatericen, yesterday. The nurses call it the “Shake and Bake” medicine. Robert had two episodes of tremors and his temperature has remained higher than it should be. His respiration rate and heart rate are also up. He also has an awful rash that started on his arms and face and have now moved to the rest of his body. He was in a fairly good mood; much better than his mother considering we both had about four hours of sleep last night. They have decided he needs to be treated with Demerol (for the tremors) and Sovran for his nausea. They cannot stop the amphatericen but they can prep for it with what they know now.

Brian and Parris stopped by today. Parris was in the room we are now when we were here last time. Parris received cord blood and he is doing great. Brian wanted to stop by and drop off a Will Smith set, Will Smith and his horse in their original bag. I asked Brian if they found it in their toy box and Brian said no, they found it in the basket in the treatment area. They let kids pick out toys after their treatment. While Parris was searching through the basket his father noticed the toy. Isn’t that something?

Robert got red blood today and I am just waiting up for the resident to come by and look at Robert to prescribe Lasiz. Robert looks like he is retaining water and this can increase his blood pressure.

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