6/15/18 - 80 Days

First off, Thank You! so much Wendy and everyone who came to the “Mommy (Daddy) & Me Dance” fundraiser for me tonight. You will never know how much your kindness and support means to our family. 


Now, back to my day...another rough one unfortunately. It went kind of weird. This morning, just like I had the last three mornings, I had a bad fever gain on me again and my heart rate was higher than it need be. My nurse friend helped me get the numbers back down with medicine, Ice packs and time. I was wide awake most of the morning, but I wasn’t well. Feeling feverish is not pleasant. Mom held my hand and talked to me; reading me your messages. It was nice to be able to see her and know she wouldn’t let anything bad happen to me. She promises me that every time I have bad luck. I sure seem to have a lot of it. I get scared sometimes. My family and friends have told me that something good will come of all this one day. We talk about that, too...my future. I’m not sure what I’ll do with my life yet, I am just little if you remember. Sometimes we joke I’ll be a Cardiologist. I wonder if there are any cardiologists in my hospital that have heart transplants themselves? We will have to ask. Mom and Dad have something special started for me when I get bigger. We will talk more about that after my heart gift comes. 

Speaking of a heart, today is my 80th day waiting. I hope my gift comes soon. Lord knows I need it too. The wait has actually gone fairly quick. Time is weird when you’re in the hospital. Sometimes, time goes slowly. Like, when I am getting thru a hard day. Other times, time goes by fast. Like, when I think of how long I’ve been in the hospital already. Four months has felt like years at times and seconds other times. It’s easy to “get lost in it all”.


Anyhow, I ended up feeling pretty comfortable mid-day. My fever finally had come down under 100*F and I was much happier. Still awake and restless, but felt a smidge better. Mom helped me go “Facebook Live” and say Hi to the friends going to the fundraiser tonight. It was kind of fun, but I was missing my shows because Mom had to hold her phone up for me to say Hi. I like people. I like TV. It was a tough choice. Ha ha! I started to give everyone a scare not long after we hung up with my friends. My heart rate had been sitting around the 200’s for a long while as I was just resting quietly... and my fever began to climb up, regardless of what my nurse was doing to help. My skin started to turn that scary marbley color and my respiratory rate was very high. I ended up getting sedated and packed with cold ice again, for the second time today. My nurse friend invited the doctors and care team to come visit and discuss what to do next. They held my feeds a short while and ordered another EKG to be done to look closer into the Tachycardic periods and make sure things looked acceptable. Haven't heard what that came up with yet. I don’t know exactly what the plan is for me over the next couple days, as I fight this pneumonia, but I do know I don’t want to do “this” every day. Today was the forth day I’ve had these high fever, high heart rate periods and they are exhausting. Hopefully the antibiotics begin to do their job. The team has also ordered regular cultures to be done until this has cleared to be sure that nothing is missed or gets worse, but with the extra blood draws comes the almost imminent need for a blood transfusion. I have gotten tons of transfusions during my time in the hospital so far, but with each new transfusion comes the risk (I’m not sure this is the appropriate word) for new antibodies. More donor blood in my system, more resistance, lesser and lesser chance of taking “any” heart...basically, getting blood transfusions makes my body more picky. Usually the hospital will split up donor blood (because I’m little and only need a small amount) and give me blood from the same donor, when needed, if possible. That’s a little thing that I think is pretty smart. I’m confident the care team here knows what they are doing and what’s best for me thru all this though. There sure is a lot to go thru in my head though. My life is nuts! I just want to feel good, get healthy and go home for the first time ever.


I’m going into night time feeling okay. I’m exhausted from along day. My body worked pretty hard. One of my special girlfriends is here with me all weekend and will help me rest up to feel better. I hope tomorrow is better. I’m going to try very hard to get a good nights rest and go into tomorrow strong as I can to fight that darn pneumonia off. Please, please keep praying for my health. Good night. Love, Heath 😔

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