6/13/18 - 39.9*C


The only word I can think of to describe today correctly is, Long. Today was long and arduous. I started the day feeling a bit defeated. Let my prefix this by saying, I was not mad. I was not worked up. I was like pictured, above...cozy. What you don’t see in the picture was how rough of a go I was having. I had a fever. A bad one. My heart rate was upwards of 210bpm. The fever, a staggering 39.9*C (103.82*F)...I was burning up 🤒 I may sound a bit dramatic saying so, but i sure felt it.


Morphine, Adivan, Tylenol, Ibuprofen...you name it and nothing was helping much. My nurse today was a Bro-dude friend of mine. We talked it over and decided to try an old school cure and pack some ice around me to try to bring this wicked fever down. I held my Mommy’s hand and watched The Lion King on TV, waiting for the ice and medicine to help. I quite enjoyed the ice packs, honestly. I have always preferred to be on the cooler side. I suppose that is because I started my life out on ECMO and they kept me cool on purpose to help my body. So, I liked the cold feeling. I ran my fingers over the ice packs as they began to warm up and melt. It felt so neat. New. My fever didn’t really break today, until this evening, but the ice did bring it down significantly. Then, later in the day, Adivan seemed to help.  

We aren’t sure yet what my body is trying to tell us with all of this “drama”, if you will. My fever and high heart rates from this morning and this afternoon seemed to definitely coincide with one-another. So, to be sure my heart wasn’t trying to make a statement, the care team did an EKG to check it out in more depth. They were a little concerned I may have been having some arrhythmia episodes earlier in the day that might explain something, but the EKG results seemed normal and non-concerning. If you’ve been in my life or following my story since day one, you know that I wasn’t initially a “cardiomyopathy baby”. No-one actually knew what was wrong with me. They think I had something called heart-block. I had a pacer for a while because there seemed to be an electrical issue with my heart that caused it not to “fire on all cylinders”. So, I had frequent and various, unpredictable bouts of arrhythmias. So, hearing them concerned about that as a possibility today had gotten Mom and I pretty nervous. I’m glad the EKG was seeming normal and hope my heart behaves now. 


My bro-dude worked with me through the day. I sat up in my bouncer thru the end of his shift and watched TV, dozing off and relaxing, doing my best to breath deep and slow, and to let my body recover from today. He was able to get my numbers back to acceptable before he left to go home and my night nurse took over. I hope to stay in the normal ranges for the night, now and get some much needed rest after today’s events. Please pray extra hard for me tonight. I could sure use the good vibes. I hope my new heart gift comes soon. Good Night. Love, Heath 

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