Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 9, 2002

BMT + 7

Right now it feels like a numbers game; watching Robert’s temperature, his blood pressure, his oxygen level, his respiratory rate, and his heart rate. Robert had a high temperature on Saturday and was put on antibiotics. They also took blood from his central line and cultured it (in fact, they have been culturing it each day). The first day’s culture came back positive for Gran Neg Rod, probably from his gut (which is very common with this type of BMT). The doctors have said if he still runs a fever now it could be related to a fungus infection, which is also very common. But the medicine to fight the fungus, amphoteracim, has many bad side effects. His temperature has only been higher than normal slightly during the day and this evening. I am not sure he will need the anti-fungal medication or not.

Robert seems uncomfortable this evening and his respiration has been high for the last two hours. We don’t want to give him Tylenol because we need to track the fever. At first, I thought his high respiration rate was related to a reaction from his red blood transfusion but I now am thinking it might be pain related. Robert is on a continuous I.V. pain medication to help him get through his mucositis. He just received a bullis (a boost in pain medication) to help him deal with pain.

Yesterday was a real tough day for Robert’s mom. Robert slept from 1:30 p.m.- 7:00 p.m. When he woke up I couldn’t find his favorite toys, his two Will Smiths from Burger King. He came into the hospital with only one this time versus four copies last time. Three of them were lost during the last BMT. I was able to get another one on E-Bay but it took three weeks to get it. I am pretty sure that these last two Will Smith’s ended up going with the laundry and the laundry goes to another company for cleaning. When I found this out I cried and cried and cried. When Mark called he said I probably wasn’t crying so much about the toy as the situation. My husband is a very smart man.

They are still going through yesterday’s laundry to see if they can find the two Will Smiths. I also went on E-Bay and bid on two more sets.

By the way, Robert’s hair just started falling out.

And it was nice to know that Brian, Parris and Henry stopped by to say hi today. Parris had a bone marrow transplant at the same time Robert did last time. The nurses enjoy seeing the Benders almost as much as we do. They brought Robert a huge toy that Matt will want as soon as he sees it.

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