Taking a Step Forward

I mentioned yesterday how very sick Kendall is, despite his being more awake and alert. The doctors had determined that as long as nothing new went wrong, they were OK to continue aggressively treating things and waiting a bit to see if Kendall improved. Well, something new did happen. Kendall is now bleeding internally, quite a bit, which has made his blood pressure dip dangerously low. That…

Awake!

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…

A Change of Plans and a Change of Rooms

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…

Some Hard Decisions

This has been a pretty difficult, emotional day. I needed to make some end of life decisions with Kendall's medical team, and discussed in detail what it would look like having the family come to the hospital to see him. They will probably be taking Kendall off of the ventilator tomorrow morning. Did you know that ventilators are usually only used as temporary fixes? That it is…

Just Call Me Susazane

I wish I had been keeping all of the visitor's badges with the various spellings (butcherings?) of my name from the past six months. Today's doozy was "Susazane" (SOOS-uh-zayne?). Really? I even usually spell my name for them when I get there. Several of the security guards know me by sight (and name) by now, and today one of them mistakenly thought I was an employee because…

Room To Stretch Out

The bed Kendall has had up in the ICU really wasn't long enough for him. His feet were smashed to the side and against the bottom, and nephrology felt that it was contributing to how swollen his feet and ankles were. They tried taking off the foot board, but with the head of the bed elevated Kendall kept sliding down and hanging off the end of the…

Accepting the Help I Didn’t Know We Needed

When I write these updates, I'm mindful of the fact that many people who read them have gone through (or are going through) incredibly hard experiences, and without the expanding and multi-faceted support network that has sprung up for our family. I'm sorry if that has ever made anyone feel isolated, or unnoticed, or less loved. The truth is, we often don't know about the hard things…

Stabilized

The HICU (Huntsman ICU) doctors have been allowing me to participate in their rounds on Kendall's case each morning. While I have learned a great deal of medical terminology and what different types of numbers might mean, there is a lot that I don't completely understand. And so much of it is discussing the many serious conditions and failing organs and problems that his body is fighting…

Another Hard Day

Kendall was put on a ventilator today. Have you ever been in a room when they have to intubate someone and put them on a ventilator? I did an internship in a hospital in grad school and was exposed to ventilators, but it is a completely different story watching someone you love going through it. He had to be sedated and paralyzed. It was heartbreaking realizing that…

Well, That Was New

Kendall was moved to the ICU today. He has been getting progressively worse each day. Today his breathing was much more labored, and he was very agitated and the encephalopathy (confusion) was a lot worse. As the doctors had feared he was starting to fight against breathing and keeping his oxygen mask on. Kendall's kidney numbers were also a lot worse today, so the decision was made…