Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: May 21, 2002
BMT + 49
Let’s get through the bad news really fast; Robert’s GGT went up from 987 to 1149, the highest it has ever been. Dr. Lee said he would be more concerned if the bilirubin had also increased but it actually dropped from 21 to 19.9. The GGT is a bile duct enzyme and could be high because Robert has been on TPN so long. The steroids and GvH can both drive it higher also.
Now for the good news; ROBERT HAD A GREAT DAY! He watched (really watched) that cute cuddly little bear, Winnie the Pooh all day long. He giggled at the appropriate times in the movie. He smiled at everyone that came into the room (except physical therapy). He was even nice to the respiratory therapist after she let him take his treatment as if he was smoking a pipe. Brian and G’ma were even nice enough to say they thought he looked less yellow today (love is blind). Brian also said he would sleep better tonight seeing Robert look so well. Robert also started food today; five cc’s an hour of pedialyte through his feeding tube (if you can call that food). Tomorrow, he will get pediasure at 50% strength. Dr. Lee is taking it slow and Robert seems to be handling it well.
G’ma also brought Nick up to the hospital so that Nick and I could work on his book report while G’ma and Brian visited with Robert. We didn’t let Nick into the room; I only let him look through the door. I didn’t want Robert to see Nick and be disappointed that he wasn’t going home right away. It was a lot of fun for me to take Nick around to introduce him to the doctors and nurses that were working tonight. It was a great idea of G’ma’s to bring Nick to the hospital so that I could spend sometime with him.
Aunt Michelle sent Robert his own medical kit. He seems to enjoy watching me give all the nurses shots and he liked leaving the blood pressure cuff on his stuffed dog. When Robert fights having his blood pressure, we sometimes have to leave the blood pressure cuff on him so that we can take it when he calms down.
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