Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 22, 2002

BMT + 50

Let’s get through the bad news really fast; Robert’s GGT went up from 1149 to 1319, the highest it has ever been. I know this sentence sounds familiar and it is, just worse than yesterday. Some of the other numbers that go along with GGT also got worse; ALT, AST and Alkaline phosphate. Now the good news; Robert’s platelets were 32k, only down from 43k yesterday. This means he may make it two days without platelets. Also his creatinine is improving; this is a sign that his kidneys are doing well.

The resident, Ted, knew I was extremely cautious about turning down Robert’s oxygen canule level so he had the nurse ramp Robert down during the night. By the time I woke up in the morning Robert was on room air for a while. I recommended we check blood gases before we removed his canule. They were good and Robert had his canule removed (I get to see his whole left cheek again).

We were so afraid of the ventilator it is still hard to believe his breathing is back to normal.

Robert started receiving Pediasure around 1:30 p.m. today at 5 cc’s an hour (half strength). This is about half a teaspoon an hour. This is a very careful group of doctors; we are going slowly.

Robert’s diluadid was turned down another .01 to .04 today.

Robert has to be about the happiest kid they have ever seen in the bone marrow unit. He smiled at everyone who came in. He also said, “I said no,” about 20 times today. He even yelled at his cousin Mia on the phone after I called her to wish her a happy birthday today. Somphit came by today and was nice enough to take some digital pictures and e-mail them to me.

Counts