11 Oct Fun in Boston
This afternoon, we headed to a place that absolutely makes me, the germaphobic mother of an immunosuppressed child, shake with fear...
Author: admin
10 Oct Boston weekend
I apologize for being a bad blogger as of late. The hotel wi-fi is horrendously slow, so uploading the important things, i.e. pictures, takes forever and a day. We have no blood pressure or heart rate monitors or daily labs to know how Keegan is...
08 Oct Friday photos
Today was our first "free" day in Boston - outpatient and no appointments at the hospital, much to Keegan's dismay. He was a very unhappy camper yesterday until we pulled up to the hospital. His frown turned upside down, and he practically skipped inside. You...
07 Oct Day 1
First day of outpatient life in Boston went well. Labs, EKG, & clinic appointments were ok. I will update more tomorrow. Tonight, I am thankful for Rylynn's new heart and that my only alarm clock (besides Keegan waking up too early) is 9am meds!! Details...
06 Oct Discharged!!
Keegan was discharged from Children's Hospital Boston today after exactly 6 weeks inpatient. We are staying in a hotel locally for at least a week, possibly flying home as early as next Wednesday! More details tomorrow. We need to get some sleep for an early...
04 Oct What to do?
Not a lot new to share today. Keegan had a pretty quiet end/beginning of his week. His labs on Sunday continued on a track that makes us very antsy. Are we seeing the beginnings of another flare or a reaction to the IV iron from...
02 Oct Busy, busy
I apologize for the delay in posts. The last few days have been quite busy here in Boston, both with Keegan's care and discharge planning. Yup, you heard me right. Lest we get ahead of ourselves though, I should start with how Keegan has been...
29 Sep 4 weeks
Today marked four weeks of Keegan being inpatient in Boston. What a roller coaster these four weeks have been! I can't believe that after years of looking for something, anything, to tie all of the pieces of Keegan's picture together, we are finally on the...
26 Sep Ladybug Goes to School
I'm just a touch behind in posting about it, but Audrey has been going to "school" or Mother's Day Out while we have been gone. The doctors at home thought sending Audrey to school was too much of an infection-risk for Keegan while we were...
25 Sep Baby steps
Keegan is making baby steps of improvement each day. His labs have been up and down, but that is not unexpected at this point. We are doing our best to make small changes each day, so that he handles it better and is able to...