The decision was made today to wait on taking Kendall off of the ventilator. Results of a brain MRI showed that he might have meningitis. While that diagnosis is serious, it is potentially treatable. If that is contributing to Kendall’s current cognitive state, and treating this could possibly help him to improve, the doctors want to explore that further before taking him off of any life support equipment. They are still debating if they should do a lumbar puncture/spinal tap tomorrow (especially with Kendall’s low platelet levels and the medicine he gets for his VOD making him a big bleeding risk), but they decided to start treating for meningitis anyway.
There have also been some questions as to if Kendall might be having small seizures throughout the day. He currently is connected to an EEG machine that will give a brain readout for at least the next 24 hours. Neurology also came by and gave Kendall a neurological exam. They will give their recommendations tomorrow after we have the results from the EEG.
So yes, things are certainly still very critical, but today did not end up being quite what I expected when I first arrived at the hospital. There were some good signs today, too. I mentioned in my update title that Kendall moved rooms today. That’s right, this is the FIFTH room he has been in during this hospital stay. This time it wasn’t because of something breaking, though. PT (physical therapy) wanted Kendall to be in a room that had a built-in lift (similar to the lift picture I included a few posts ago, except this one connects to the ceiling) to help him sit up and do some different exercises. And he did it! Kendall was able to sit up, unassisted, for several minutes today. I can’t remember the last time he was able to do that.
HICU also made an exception and allowed Kendall’s mom to come visit at the hospital even though I was there (current policy says only two approved visitors, and they are not allowed on the same day). She changed her flight and ended up arriving last night from Virginia. It was good to have her there. Yes, there were many things that were a huge relief today. I was even able to get home in time for dinner with my kids, which was good for all of us.
With that in mind, though, I’ve debated on exactly how much I should share in these updates. There is no question I am being strengthened and receiving divine help. Every single day, absolutely. But I’m also human, with limits. All of the emotional highs and lows do take their toll. I’ve been having nocturnal panic attacks, and earlier this week I had a panic attack (a first for me) as I arrived at the hospital that turned into a pretty significant asthma attack. The past two weeks spent in the ICU have been indescribably difficult, and up until today it was an experience that I couldn’t really share with anyone. No one really understood Kendall’s condition, or how terrible everything has been. If Kendall recovers and is able to leave the ICU back down to the BMT ward, the medical staff has assured me that he probably won’t remember these weeks in the HICU. But I’ll never forget the trauma and the terror and the continual setbacks or successes, the discouraging talks with doctors, the gut-wrenching decisions with no input from Kendall, the constant alarms going off, the hours spent waiting and praying and feeling helpless, the ever-present need to be Kendall’s voice and stay tuned in to what he needed or could not express himself. This experience would be difficult for anyone.
But there are also the ways I’m healing and learning to take care of myself. I talk with professionals (or sometimes friends), a lot. I utilize the help that is offered. I actively practice mindfulness and grounding. Sometimes I will write out my thoughts, ugly and angry and anguished and all, and then rip up those words so no one will ever read them. I pray, a lot. I turn to my scriptures. I listen to uplifting music. I try to remember to eat, and drink water, and sleep, to find excuses to get up and move my body. And I take things one day, or one moment, at a time. I try to have compassion for myself and those around me, for just trying to do our best. For sometimes failing to always show up in the way we would want to, but picking ourselves up and continuing to try. And that’s beautiful, and real, and empowering.