Amanda has been taking steroids since we’ve been here. Initially, a high IV dose, then a lower maintenance pill dose. I hadn’t noticed any of the symptoms we’d experienced before, except a little more of an appetite, until yesterday. Late last night, while watching a movie, she got unusually emotional. Today wasn’t a good day…

This post is all about the “Big Gun,” Solaris. This is the medication that is supposed to do the trick. A big prayer that this treatment is the big fix. There was talk of other treatments after the PLEX and IVIG, such as next steps if they didn’t work. But there has been no talk…

I was awakened by the nurse giving Amanda meds at five this morning. She left the door open, and I heard a code blue, a call to someone crashing or in need of resuscitation, for Cooley 8A. That’s where the CTICU is and makes things a little more real. I was researching the new medication…

I woke in the middle of the night from hitting my knee on the back of my chair bed. It startled me, and I didn’t know where I was, so I freaked out for a bit! I must have hit my foot on something as well. You OGs might remember I had both my big…

The transplant nurse practitioner came by this morning; we don’t like this one. We have a favorite transplant NP, but we haven’t seen her yet. Amanda had already told the nurse she wasn’t taking the new medication because of the side effects. Amanda told the NP how she was in pain and had the hard,…

Amanda said that after the cath, the fellow initially said everything was good. She mentioned how he threaded the catheter fast, and she could feel it going up; I can’t imagine how that feels! She also feels when they snip the biopsy, mentioning that before. She’s always been sensitive with her heart (even the new…

As I walked outside this morning to grab a coffee, I was glad that the delivery last night had a heavier pullover in it. The cold front had made its arrival, and it was a little nippy! My buddy was not outside this morning he was tucked back inside. The usual rowdy homeless must have…

That title sounds like we’re in prison. I guess it kind of feels like it! We had multiple visitors today. Amanda’s aunt called me this morning to ask if they could drop by. They live in the hill country and were in the area seeing their kids. They stayed, and we chatted for a while…

As I walked across the street to get coffee this morning, a homeless lady screamed obscenities. I joked with my security guard buddy that they came and got his friend yesterday afternoon. He mentioned that guy had been a problem all day. I said something about the screaming lady, and he joked they must have…

During the underwear debacle, I also picked up a foam topper to add to my chair/bed in an attempt to make it more bearable. I woke up with a sore back but did not need to take anything for it. I have one more trick up my sleeve to get better sleep in that thing.…