February 27, 2007 mcfadyena

Infusion #4

Our last trip pre-infusions, to San Diego. January 2007.

We arrived at the MDU at 7:30am. It took a little while to get Trey started on Elaprase because the pharmacy was slow and there was a situation in the Medical Day Unit (someone got sent down to the ICU), but otherwise things were uneventful (a good thing!). Emla, BP, temp, weight, and a listen to Trey’s chest were first thing. Tamara (SLP) came at 9:30, the port was accessed and ERT began at 10:00am, naps happened around 11:30, and we left at 3:00pm.
Details: The nurses used only paper tape on Trey’s skin, as he has been reacting to the adhesive used in the past 2 weeks. It worked. No redness. Also, which was a totally unexpected and thoughtful surprise, was a birthday present for Trey from the MDU nurses. They sang him happy birthday and gave him a book, a stuffed animal, and some hot wheels cars and a track. Trey was so thrilled he was jumping up and down. It was really cute. It is Trey’s third birthday on Thursday. Tomorrow morning we have someone coming to do a clip for Shaw television.


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