It’s been a hot second since we’ve updated. Graham has been good! Our big highlight is his NG tube is out, and he has been eating better! He is receiving an appetite stimulant, but we wonder if he needs to remove the NG tube. They’ve worried about his eating. Hopefully, he can maintain this higher caloric intake. 

Graham’s parents, however, have had a rougher two and a half weeks. Our room was isolated after a COVID exposure, then Zach tested positive. Zach has been at home for two weeks, still testing positive. He’s feeling much better, and we are excited to see him soon! I had to go to work for five days to get the school year started and create sub plans for an indefinite amount of time (this includes three preps and Chromebook management plans ????). Zach’s parents, Mike and Sheri, saved the week, lifting Graham’s spirits and allowing me to fulfill my work obligations. 

One medical thing we’ve been figuring out with Graham is his heart rhythm. He’s had some weird rhythms appear on his screen in the last few weeks. Typically, they see rhythms, especially in high frequencies, are significant concerns if a patient’s heart is healthy. Since Graham is on 100% mechanical support, with his left and right VADs working independently, they aren’t too concerned with his native heart rhythm. At the end of the day, as long as his Berlin’s are pumping as they should, his vitals look good, and he looks good, there probably won’t be much intervention. 

Graham is continuously surrounded by so much love. The nursing staff continues to be MVPs – coming in to play and interact with Graham. They brighten up our room continually. He’s grown fond of the service dog, Thor, and lights up every time Thor and his handler come by. The music therapy and child-life specialist have been working with Graham to help him express his big feelings. He talks a lot about his fears but loves talking about what makes him happy ♥?. 

The light keeps shining in the dark, and darkness has never put it out. John 1:5