Inpatient Days 4-5

Saturday was not too eventful. We met with the BMT team, ID doctor, and GI team. GI will scope him when he is having his other procedures. They want to hold off on switching to a GJ tube for now since he is tolerating a continuous feed (almost to his goal rate), and they have seen more complications in the last year or so with GJ tubes. Raul had a full bandage change, as well as a change of his central line dressing. We are having trouble getting any dressings to stick over it and seal the site. We got to do some laps in the hall Saturday but were not able to go off the floor as Raul had a low grade fever Friday night. Raul had fun in the hallway pretending we were speeding and all the nurses were the police. He also got down on the floor in the room to play with pretend snow.

On Sunday, after Raul got up for the day at 4:30am, we were allowed to get a pass as Raul had been fever free for over 24 hours! At this point he will not be able to be discharged prior to transplant, so it was nice to get some fresh air together! Raul had to get his line dressing changed before we left as it was coming up again, but today's attempt looks promising. Due to his antibiotic schedule we can only have short breaks off the floor, but we had a lot of fun and he was much happier. We took a quick trip to the zoo to check out the giraffes, and Raul ended up riding a little car ride. He wasn't able to do it himself, and I wasn't allowed to stay with him, but the ride attendants were really nice and one of them pushed him around. Raul had a lot of fun, and was so excited that he had done it!

Over the next few days we will have several other consults, and it is looking like the tests/procedures will happen Tuesday at this point.