I have a spicy attitude today. There is spicy great, and spicy NO BUENO. Today is no bueno for me. But, this isn’t about me.

Luke continues to do all the things he needs to do and battles in the ICU. He uses the stupid spirometer that makes him cough to high heaven with chest pain. But he does it. He gets out of bed and they switch his mask/o2 machine and he sits up. He stretches, walks in place a bit (while watching his SAT go down) and just keeps fucking going. He is on 2 antibiotics, one anti-fungal and steroids. He had a nurse and a “new trainee” nurse last night that had to poke his veins THREE times to run a CBC and Karius test. Apparently, he told his Dad to not make a comment about it and Luke just sat there and took it. They left his fish bowl of a closet in the ICU after getting a couple of vials of blood and Luke said “ouch.” So, yah, here I am saying it. It is hard to not be there to advocate for my boy, but he clearly has it under control. He has indeed kept his smile loud, like his mama. He also still continues to nail the epic “eye roll” he inherited from me. No shocker there. He has the same nurse duo tonight-I’ll stop myself from actually telling you their nickname. I told you I was extra spicy tonight. (BTW the nurses at Children’s remain to be the biggest angels on earth. I just don’t want my son to be the guinea pig for any more pain, even a prick. I’m actually done with pricks as well. Literally).

Luke did eat some chic-fil-a today for breakfast/lunch as well as some other dinner. Today I busted out of Hotel de Colfax for a lil field trip, where I have made many new friends, and went to Target. I got Luke a mattress topper for his hospital bed, a cozy blanket, shit tons of junk food as well as “nutritious options.” Ugh I just said “nutritious options.” Get me out of here. Anywho…

I am feeling almost 100%. Except my heart. I remind myself and Luke that shit gets bad FAST, but it can get better even FASTER. I fully plan on the latter. And that is what will happen. Everyone keeps asking me how long I plan on staying at a hotel across the street from Luke. I don’t know. I know Luke wants me close and wants me here. I don’t know what fucking covid protocol is these days. What I do know is visiting Luke in the PICU at Children’s would be the most selfish move I could make. Duh, he was massively exposed to me already and covid may indeed be the culprit in this entire shit show. BUT, the rest of the sweet kids, as well as the staff, don’t need extra trials in their lives. So, I don’t fucking know.

One of the pokes that Luke got last night was for a test called Karius. I have been reading about it and the supported clinical trials over the last couple of days. I would describe it, with my basic medical degree, as AI merging with medicine. It is quite interesting. I have a hard time not thinking of Elizabeth Holmes and Theranos. The con she pulled with the most profoundly intelligent brains is astonishing. Alas, I am holding out hope that Karius tells us something, or nothing. It isn’t cancer. It isn’t transplant rejection. It is pneumonia that turned ugly.

https://kariusdx.com/

I am concluding my evening at the Hotel Motel (not Holiday Inn) on Colfax with a couple of cans of Chardonnay and a really hot shower. I will wake up tomorrow-and 8 times in the middle of the night- with a smile on my face.

Fuckets of Bucks,

Suz