I sit here tonight worrying, not about my own child but about someone else's. Apparently little Tyler is septic. If you remember, this is what ultimately took Alex's life. No child should have to go through any of this, it's not fair!
I'm feeling especially cranky tonight, since mothers day is less than 90 minutes away. I am a mother, but one of my children can't be with me. I miss him so much.
I read journals here on caringbridge about other kids who are in various phases of struggling with problems much like Alex's. The constant roller coaster of emotions. I am reminded of our stay in the hospital. I remember sitting on that first chair at the end of the hall in the waiting area during Alex's many OR procedures, waiting with baited breath for a glimpse of a doctor I knew was with him to come out, signaling that they were finishing up and I could see him soon. When they did come out I would wander down the hall and turn the corner to see if the door to his room was open. My heart always skipped a few beats as I walked in there because I couldn't be sure if he was stable or if he was having trouble. I remember the internal sigh of releive when I would see his monitor and every number was where it was suppose to be. I became very good at scanning that monitor for those numbers. If they were above 130 for heartrate, above 60 for systolic bp, above 80 for sats, between 36 and 37 for temp, and below 15 for CVP I could rest easy for that moment.
I became fairly good at teaching myself to only live in the moment. It wasn't possible to think ahead longer than that. Things could change in the blink of an eye and you never knew which way they would go.
I also became pretty good at reading people. You see, dont' tell anyone....... but I loved eavesdropping. I listened to everything. Hipaa laws be damned, I am a very curious person. Sometimes I would overhear that a baby was sicker than mine, and although I didn't want any baby to be sick, it put me at ease a little. One time when they were doing an echo on Alex, they were talking about another kiddo and the nurse said to me 'you know your kid isn't the sickest anymore when they are talking about someone else while looking at his heart'. Little things like that would just make your day.
I've read back on entries in this journal and come to the realization that while Alex was in the hospital, there was a lot of things I left out of his journal. Not intentionally but because my time on the computer was limited, and because at that end of the day my mind wanted nothing more than to just shut down from information and emotional overload. The memories are still fresh in my mind, sometimes they come in spurts. But I will put them here when I think of them and you all can once again, for the moment....... live with us in the pediatric intensive care unit.