***monday Today was totally nonstop! We went from doing fairly well this morning to being rushed into a string of tests and procedures and surgery the rest of the day. After Kai’s morning meds his blood pressure began to drop. I wasn’t too worried about this as he is on some pretty heavy pain meds… Continue reading Tests, tests and more tests
Today was supposed to be a big day for us. First, Founders day at Perkins, an assembly put on by the students that I was really looking forward to, and then we were due in clinic to discuss treatment options. I have been pretty anxious about this appointment as I am starting to feel like… Continue reading Today WAS the day
Kai was up half the night again and hasn’t been feeling great this morning but we are still on schedule to go home! Last night I got my teaching on how to use the IV pump at home but a visiting nurse will also be there with us tonight to make sure all goes well.… Continue reading Day 6 -going home
Kai had another good night. He was awake a lot but he was pretty content. He did not have any pain meds and he tolerated the feeds and his chemo well. This morning the team came by and said the plan is to get us out of here tomorrow! We will continue to bump up… Continue reading Morning Rounds
(sunday) Kai had a decent day yesterday. He spent the afternoon with his Gigi and he was feeling pretty good. He had a long stretch from 2pm-3am with no pain meds. He tolerated his tube feed all day and all night and everyone was hopeful that we were heading in the right direction. The on… Continue reading Day 4 inpatient
Kai went into MRI yesterday around 3:30 everyone was excited that we were getting in ‘early’ since our slot wasn’t until 5:30. They must have forgotten that we also waited all day yesterday…thing seems to move a lot faster down there on a friday…just saying Anyway they got us in early. He did ok. Because… Continue reading MRI ‘stable’
MRI never happened yesterday. He fasted all day for nothing. After we knew MRI wasn’t going to happen I was able to feed him some and he actually ate pretty well. He had some Mac & cheese and chocolate pudding with peanut butter ( his new favorite way to eat his PB!) He probably ate… Continue reading We’ll be here all weekend
