Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: June 11, 2002

BMT + 70

Robert is still in good spirits, but not eating enough. The bone marrow team has decided to go ahead with a liver biopsy tomorrow. They want to see if the high GGT is caused by GVHD, which is the most likely case. The procedure is not very dangerous, but they have given platelets today at 3:30 p.m. They will give him another bag at 5:00 a.m. and then they will check his platelets at 6:00 a.m. If the platelet count is not as high as they want, they will give him more platelets during the procedure. They will check his counts four hours and eight hours afterwards to see if he is experiencing any bleeding.

The nutritionist is again talking about a feeding tube. I said we need to get Robert home, back to his normal environment where he has to fight with his siblings for his food. Robert has been gagging and this may be affecting his appetite.

I would say all of the above is a major setback to getting Robert home. He did get up three times today and walk around the room. He also helped Jennifer make his bed today.

While reviewing the daily charting we did find some inconsistencies in the charting of Robert’s solumedrol doses. It is a good idea to read over the charts each day. The question is whether he received his two doses a day all at once, whether he received some second doses or whether the second doses were just not charted after they were given.

Counts