Keegan's port is accessed seven days a week for his daily IV medications and TPN. On Sundays, we take the needle out after his morning meds, and he gets a break until bedtime. We had a wonderful day swimming yesterday while he was deaccessed. Keegan...
Just a quick update to say Keegan is still hanging on at home and still TPN-free for the moment. His labs this week continued to show a steady decline. However, the medical team is in agreement with us that there is nothing to do now...
Saturday we were blessed with another fun day courtesy of Texas Scottish Rite Hospital, where Keegan sees his rheumatologist and developmental pediatrician. It was the hospital's annual Farm and Ranch Day! We met up with my friend and Audrey's godmother, Marci, and her son, Noah,...
Here we are breathing down the door of being home almost a week, and I have to say I'm relieved...
Keegan was discharged home today. I think it's safe to say we are all uneasy about how long it will last, but that is surely no reason to stay in the hospital. For tonight, we are setting our short-term goals at longer than 2...
Keegan continues to be his usual enigma-wrapped-in-a-riddle self. There was an error in his TPN last night, so after much discussion (including with the transplant cardiologist on service directly calling our room to go over his decision...
It's been an interesting couple of days around here. My hives continued to worsen and spread to my face, so now Keegan's not the only one on steroids. They do seem to be less angry today though, so hopefully the meds will nip it in...
Keegan had a pretty quiet weekend in the hospital. He had visits from Jenni and Mindy (his friend from the ICU, Tucker's mom) on Friday, one from Mamie, BD, Audrey, Alex, Chum, Poppy, and Pops on Saturday, and one from our friend Stephanie and baby...
I'm being a bad blogger, I know. I apologize to all of Keegan's faithful followers and to my future self who looks to this blog to remember medical details that have since fled my mind. I just don't have the energy in me to hash...
I managed to keep my cool today, but I have been silently screaming all day. I'm mad.Mad at many things both controllable and not. The cultures all grew out our old friend from a few years ago, staph epi. So far, yesterday's culture is still...