Yesterday was a really rough day. It was the least responsive I have ever seen Kendall. He just would not wake up, and he was unresponsive to commands during his neurological exams throughout the day. It was especially emotional for me when the music therapist came by and Kendall did not respond at all to the songs she sang (ones I’d picked that had memories for both of us from high school associated with them). The doctors were pretty grim when they spoke with me. The decision was made to go ahead with a lumbar puncture/spinal tap to see if bacterial meningitis or any other infections could possibly be affecting Kendall’s brain and mental status. This picture is of Kendall’s cerebrospinal fluid. So many fluids you’re getting exposed to with these updates!
Then to top it off, it took me nearly four hours (instead of one) to drive home that evening due to an accident that completely closed down I-15. That was a long time to sit in the car with my thoughts. (Although on the bright side, I did get all my steps in as I was waiting. I’m sure the people in the cars next to me thought I was crazy as I was dancing and stomping along to music to rack up steps. Ha!) I was utterly exhausted, physically and emotionally, by the time I finally got home last night. It was hard not to feel defeated after such a discouraging day.
So imagine my surprise when I walked in this morning and found Kendall wide awake and sitting in a chair working with one of the occupational therapists. !!!! They said that last night Kendall just suddenly “woke up.” (Not sure why I didn’t get a call….) And he’s been alert ever since. Kendall was able to sit in a chair for most of the day, and he even stood (with lots of assistance) for a few minutes. He was able to follow commands, and answer yes/no questions accurately. It was miraculous. And emotional to have him truly see and interact with me again.
Kendall is still very, very sick. He still has severe VOD, is in complete renal failure that the doctors don’t know yet if it can be reversed, his CMV is now active again, he’s still on a ventilator (although hopefully not for much longer), and he is very, very weak. But this cognitive piece is huge, and we know now he does not have meningitis (or any other infections in his CSF, according to the results they have back – still waiting on some). And it seems like Kendall’s body is still fighting, even with how weak he is. Who knows what tomorrow will bring.
(As a funny anecdote, earlier in the week I called the HICU front desk and asked them to transfer me to the phone in Kendall’s room. We’d been doing that each evening so the kids could tell Daddy about their day, say they love him, and say good-night. There was a long pause on the phone, and then the nurse came back on and asked, in a very hesitant and awkward way, “Ummm, has anyone updated you lately on your loved one’s status?” My heart plummeted and I wondered what could have happened in the short time since I had been there with Kendall. When I asked and explained that I’d been there earlier that day, he let out a relieved sigh. He thought the kids and I were expecting to have a back and forth conversation with Kendall and didn’t even know he was on a ventilator!)
