He is still extremely fragile and weak, which is one of the hardest things for Mike and I to wrap our heads around since he always bounces back from an illness/treatment within a day or two. This is the kid who, after a day of chemo and spinal taps at the clinic, will hop out of the car and skate for a few hours before calling it a day. Monday will be 8 straight days of bed rest for Johnny. I can't tell if he's weak and still recovering, mad about being here for so long, or just tired of fighting. It could be a combination of everything too -- plus, Joey is scheduled to leave for Hawaii on Tuesday for a WHOLE MONTH.
Johnny and Joey are tight. They might not have a lot in common as far as skateboarding (Johnny's thing) and video games (Joey's thing), but they love and understand each other like no other. Today Mike brought the kids up and we were able to spend time together as a family, something we haven't done in a while. We took Sophie out of the room so the boys could spend time together -- and Joey showed Johnny how to do a few magic tricks. Mike will drop the kids off at the hospital in the morning so we can hang out before Joey's big trip.
Each day is like a roller coaster ride and every team of doctor's has their own take on what might be going on with Johnny. As soon as we think we might have a handle on what's going on or he might be over the hump, he spikes a temp. I can't sleep at night because I just stare at him and hope and pray that he will come out of this with flying colors. Then a test comes back with weird results or a fever creeps up. Our life is no longer a day to day thing, it is literally minute by minute. Mike and I try to keep ourselves positive by saying that the cultures haven't grown anything and some of his counts look good, but no one is sure what will happen next.
As I finish this update, Johnny has spiked another fever -- this time 103. Just about an hour ago I sent Mike and the kids home with a slight sigh of relief that things might be okay thought the night. How quickly things change.
From the sound of the length of treatment for the bacterial infection, we will be in the hospital for about another 3-4 (or more) weeks. I checked the Texas Children's Hospital website today (texaschildrens.org) and found a quick link for anyone who would like to send a free patient greeting to Johnny. We are in room 910 in the West Tower (hospital) -- he's not up for visitors yet, but I'm sure he would love to hear from a few folks. Or if you would like to send him something the address is: Texas Children's Hospital 6621 Fannin Street, Houston, Texas 77030.
Thank you so much for your thoughts and prayers, we need them as often as possible for the little guy.