Friday, April 11, 2025

Friday, April 11, 2025

Today's picture was taken in April of 2009! This was classic Mattie. Mattie's head of school had been teaching him the art of magic during the entire year that he was in the hospital. They met almost monthly for these lessons of learning and fun. Mattie really connected and loved Bob and Bob opened up a new world to Mattie. Magic became a therapeutic outlet for Mattie, and the tricks he performed helped him connect to his medical team! Cancer did not impact Mattie's fine motor skills and he actually was quite adept at performing the tricks. As you can see, Mattie had an audience (Linda - Child Life, Jenny - Art Therapy, and Sharon - Chaplin) and given that it was very hard for Mattie to socialize (as the treatments resulted in Mattie being diagnosed with clinical depression, anxiety, and medical traumatic stress), it was wonderful to see him come to life while performing magic. Not everyone has magic skills or knows how to perform tricks, so Mattie felt unique and it made him feel special. As his mom this was a unforgettable gift to observe, and a memory that will remain with me forever.

 

Quote of the day: When great difficulty arises, we tend to remember that what really matters are essential, earthy things, giving and receiving a glass of water, a cup of tea, taking the next breath. It is during the hard times that we notice that life is constantly offering itself to us. ~  Tracy Cochran

My dad is holding his own and has been stabilized. The beauty of Vancomycin, a very strong IV antibiotic. The difference between this hospitalization of his and previous ones, is I am not spending 8-10 hours sitting in his hospital room with him. Since Wednesday, I haven't been feeling well. I received a pneumonia vaccine, that has truly slowed me down. Yesterday I was fighting a fever and could hardily keep my head up. Yet I pushed through that because I had to go to the hospital. But by the time I came home last night, I was crashing. I literally took Tylenol and then Advil and sat in my dad's recliner with a heating blanket on top of myself for hours before going to bed. 

This is his first hospitalization where I have had to take a step back and rely on the hospital team to do the caregiving. This typically isn't my style, but I know that if I don't recover, I won't be able to keep up this circus show. While visiting my dad yesterday, I had the pleasure (and I use this word sarcastically) to interface with the urology team. Keep in mind that this team knows my dad quite well as they are the ones who performed all his kidney stone surgeries in 2024. While they were talking to me yesterday, they were adamant that my dad does NOT have sepsis or a urinary tract infection. I can't tell you how ridiculous that sounds, because EVERY member of the hospital staff has told me that my dad has been diagnosed with severe sepsis and his infection was caused by kidney stone fragments (as assessed through a CT scan). I have news for the urology team, the data is the data and it doesn't lie. Part of me wonders whether the team gets dinged in some way by insurance or the hospital, because their patient has returned in less than a year with sepsis. I don't know, but I am trying to understand their irrational reaction to the data!

The urology team insisted that my dad did not have an infection and that his urine was clean. When I asked them why my dad has been on IV Vancomycin for two days, they had NO RESPONSE. When I asked them why there was blood in the urine and kidney stone fragments picked up on scanning, they had NO response. I then pushed back and said, the hospital wouldn't have prescribed a high dose antibiotic, if he did not have an infection, nor would my dad have a very high white blood cell count if he did not have an infection. My dad's blood has been tested countless times and no other infections are being picked up in testing. 

Now here's the funny thing about the urology team. It was two doctors that came into the room to talk with me. What was evident to me by observing body language, is that one doctor absolutely hated and resented the other one. The other one being the talker, full of himself, and arguing with me about the infection. Watching them alone was a reality TV show, but I had to shelf that because I was too busy advocating for my dad! 

Turns out my dad has a large kidney stone in his left kidney. If he were younger, then I believe they would be taking a more proactive approach to addressing this stone. But given that my dad turns 90 on Saturday, they are more hesitant to give him general anesthesia. Yes, okay, I get it. But here's the kicker. The talkative one said to me that I have to be observant of my dad's urinary tract issues and when he is pain. Trust me, I did not like the tone, and as good as this doctor dished out, he got it right back. Clearly he has NO concept of what it is like working with someone who has Alzheimer's! My dad doesn't report out issues or problems, because he can't! He could be passing a kidney stone (and has), and he will tell you he is "fine" or "fantastic." So I know I can't rely on him for accurate reporting, so instead I have to be the medical Columbo! 

I am headed to the hospital now and will report more tomorrow. But I know I have to write the blogs in the afternoon now, because once I get back from the hospital, I need to rest and slow down to recover.