Starting the week with some changes

The peds attending discussed the G-tube with us this morning. Interventional Radiology can do the 1-hour procedure while he's having his chemo treatment, just pausing the infusion during the procedure if necessary. They will use x-ray and ultrasound to guide the insertion of the tube into the fundus of his stomach, so it is not a major procedure. He will be able to return to his room after recovering in PACU. An IR doc came to get our consent and answer questions about the procedure. She told us that once the tube is put in it must stay in for a minimum of six weeks so that the tract can heal.

Doc H2 doesn't think it's a total blockage of his gastrointestinal tract the way it was last month, but he's thinking about doing a CT so we can figure out what is causing his pain. Because of the recurrent colonies growing in his cultures, they have changed his antibiotic to Daptomycin.

A doc from Pain Service came by to talk about our options. They are considering doing the intrathecal catheter without the pump installed they would have with an adult. The installation of the pump is the invasive part of the procedure, and is not an option for Alan since he is so small. With the external pump it is a much simpler procedure since the insertion of the catheter is easily done bedside.

Miss Sheila from Child Life came to do our family handprints, which will be a family of elephants once the details are drawn in by Auntie Karen. Since it's Monday it is also RMH cookie day! Even though Alan was asleep, he woke up when the volunteers came with the warm chocolate chip cookies and said "yes!". He held it as he slept then woke up to take a bite, then went back to sleep still holding the cookie. He also drank a whole cup of water this morning so that is some great progress!



Alan loves Puss in Boots!


Alan woke up long enough to say Yes! to a fresh cookie from the RMH volunteers


One bite, then back to sleep, cookie still firmly in hand