Month: February 2021

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…

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…

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…

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…

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…

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…

I've dragged my feet a bit in writing this post. In my last update I mentioned some things that were looking more promising, and it was true. Kendall was able to go off oxygen for a few hours, he got up out of bed a little, and he was more alert for a while. Things since then have been very difficult, though. All of his numbers are…

Again, not sure why Meal Train often lists the wrong date. It's only 7:00 p.m. on the 18th, so it's not like they're based on the East Coast....no idea. Yesterday's update was pretty grim, and led to some difficult conversations with the kids last night. I really didn't know what I would find when I got there this morning. So I was pleasantly surprised to find Kendall…

Kendall's liver numbers are much worse today (over 2,000), which means that this is severe VOD. He has also gained 31 pounds in the last few days from fluid retention. He did have a paracentesis today to drain some of the fluid, so hopefully he'll be more comfortable and in less pain. It should also put less pressure on his lungs. Kendall was not moved to the…

I know I was awfully cryptic this morning, so here are a few more details about what is going on with Kendall right now. Kendall still has pneumonia and breathing is more of a struggle for him now. He has a staph infection and the active CMV that the doctors are trying to keep under control and treat. He is still not eating well. But the most…