Our boy… I can’t even begin to tell you how strong he is. In the last week, he’s had a pic line put in while awake, arterial line, flew on a medical flight alone, and then today…… He was put on the ventilator. Before they did, we played a song for him…our song (his and mine). Two nights ago, he said he wanted to dance with me the following morning to it like we have so many times before.

The song… “Die a happy man” by Thomas Rhett. Ever since he was old enough to sing along, he’d sing so loud and always had to hold my hand to it even while he was in his car seat in the back seat. Placing him on the ventilator today took 4 adults and 4 doses of sedation medicine to get it done. They couldn’t truly sedate him so he’s on a low dose and then pain medication to keep him calm and asleep.

He also has restraints on both arms. Yet, about 2-3 hrs after being on it, he decided he was ready to fight some more. He was trying to rip everything out. It took 7 of us to hold him down while they got him additional medication. As soon as he was resting, the doctor, nurses, and all the rest in the room said damn he’s tough, he is a fighter!

He is currently only on the ventilator. No mechanics keeping heart going at this time so that’s all our boy! More tests tomorrow. Hoping that they are getting closer and closer to answers. Please continue to pray for our baby. While he may be 11 years old, he will forever be one of our babies.

Love, Niki & Adam

#heartsforjaxon