Facebook post from Jenn on October 27, 2021


Another big day today! James said we could cut the wires to the diaphragm pacer that was placed in SC in case he wasn’t able to breathe without assistance. HUGE! It is a wonderful invention that allows patients to be free of ventilators, electrodes were placed in the diaphragm and would be hooked up to an external pack that would control his rate of breaths by stimulating the muscle to contract. It was placed during his surgery for his trach and feeding tube, as a precaution. If the diaphragm isn’t used, it can atrophy like other muscles and this option wouldn’t be viable at that point. So now, the 3 things placed, 2 are gone and the feeding tube will soon follow. (It’s not being used anymore). Today is another good day to count my blessings. The pulmonary group here at Shepherd are great, and they do a wonderful job of weening these patients off vents. When Julian got hurt, my biggest fear was that he was going to be vent dependent for the rest of his life. That fear was put to rest today.


On a lighter note, Kristen is back at shepherd. Her husband, Tim had been here with Britt for a week. Tim is also awesome and so good to Julian. It was nice getting to spend time with him as well but very happy to have my friend back. My life has been an emotional roller coaster and with the covid restrictions, I don’t know how I would have survived without walking this walk with her. It is so nice for someone to understand exactly what I’m going through. I love celebrating the boys achievements (big or small, we know each one is important) with each other, and being able to vent and cry when things are tough. We have enjoyed watching the Braves games and cheering them on in the World Series. Julian is already planning on the win. It’s good to have things to look forward to and brings the patients together for a fun activity. I have been reminded many times today to be patient, to believe that change will happen, it’s ok to cry and be sad, but to hang on tight to hope, and be strong and fight like crazy for positive results! Luckily for Julian, he has an army of people willing to fight with him to find his purpose after this tragedy!









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