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  • Defining Success

    Hi everyone, it’s Brittany again! This is a follow-up post to “Bestie Sleepover” where I mentioned I had more to say about some of my interactions on Sunday. First a quick recap, if you recall from my previous post, during my stay with Amanda, I headed out to pick up our liquid breakfast at StarB’s Sunday…

    January 14, 2025
  • Tomorrow is the day

    The hospitalist was the first to come by this morning. We’re really getting to where we don’t like her. I haven’t liked her much from the start, but Amanda is just now getting on board. She is being such a pain with the pain medications. I understand she doesn’t intimately know our case, but when…

    January 14, 2025
  • Bestie Sleepover

    Hi everyone, it’s Brittany again! I managed to get away this weekend for a quick trip to stay the night with Amanda. It wasn’t long enough… bestie time never is. The hard part isn’t sleeping in a hospital room chair, the hard part is leaving. And the leaving part is actually two-fold: first untangling myself…

    January 13, 2025
  • Light at the end of the tunnel

    After I got to the room last night, I didn’t leave until after lunchtime today. I just lounged around in the hotel robe, which was about mini skirt length on me! I had two showers and shaves; I was refreshed for sure. Brittany stayed until the afternoon, so I was off duty for a coffee…

    January 13, 2025
  • Night off

    Well, my bed setup didn’t turn out that bad. I took three blankets and stacked them on the crappy chair, laid my recliner back, locked the wheels, and put my foam on top of everything. I was worried about getting out and my weight shifting to the footrest and tumping over, but it didn’t happen.…

    January 12, 2025
  • Moving day

    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…

    January 11, 2025
  • Big picture on the “Big Gun”

    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…

    January 10, 2025
  • Just waiting

    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…

    January 10, 2025
  • Busy toeday

    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…

    January 9, 2025
  • Moving forward

    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,…

    January 8, 2025
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