15 Mar Monday Monday
Not much to report today from Keegan’s room. Little urine output, still tummy problems despite nothing in his stomach since Tuesday of last week, all blood counts still trending downward. We had to adjust his TPN today because his labs showed he wasn’t quite getting enough nutrients. Keegan’s tolerating the new drug pretty well. We’re not sure how effective it is/will be, but he has developed some kind of dry mouth from it. It doesn’t seem to upset him, just seems bothersome. As the dose wears off, it seems to go away, then comes back in force with each dose. He had very little energy until 4pm today, but at least he perked up some. He also received his immunosuppressant infusion and his breathing treatment.
Unfortunately, this plague has officially spread to the rest of the family – Audrey, my parents, and my mother-in-law. Audrey evidently started feeling bad Saturday night and was somewhat sick all weekend long. My parents didn’t want us to worry because she wasn’t too sick, so they opted not to tell us. I wasn’t too thrilled about that, but I understand their intent. It came out today when both my parents fessed up to being sick themselves. I guess Big Daddy got sick first and is starting to feel better this afternoon. My mom is in the thick of it now. I have felt pretty puny all day but haven’t gotten sick yet. Maybe I’ll be the one to dodge the bullet. I really hope so.
Tomorrow is John Christopher’s funeral, and I’m beside myself that I might not get to go. I would hate to wipe out the entire Heart Center with this nastiness. I hope I am able to slip away and celebrate the life of an amazing young man and be there for his loving family. He touched so many lives and gave such inspiration to so many of us that a heart transplant doesn’t have to rule your life. He gave us hope that Keegan would see many milestones and live to his full potential for many years. Funerals are an inevitable part of our lives as a transplant family. I just wish it wasn’t for a young man that was so dear to so many of us. When it’s our turn, I will find comfort in the faces of my fellow heart moms who have lived through the same thing. I hate that I might not be able to be that for Cindy, but I know she will be surrounded by the loving arms of so many in this fight. We love you, Mama Cindy, and we are praying unceasingly for your family.