Lesson #1

Lesson #1 is: Don't let yourself get run down and sick, because the patient you love needs you to be strong.

I stayed at the hospital last night in the recliner in the waiting room. I wasn't feeling 100% confident in Zhan, his nurse. Don't know why really, but in retrospect it probably has to do with my being overwhelmingly tired and cranky more than anything else.

By 6:am this morning I knew I was going to be sick, so I called James to come help me get home to our little room at the League House. Within minutes I was so sick to my stomach I felt like a ten ton boulder had rolled over me and was squeezing my body dry. I have slept off and on all day. John has been in touch with today's nurse, Rob, and James just went over to see Parker, too.

Temp down to 100.3 (Yea!!!), BP just about as normal as you can get, and heart rate still in the 120's, but for a guy Parker's size that could be his version of normal. White cell count down to 10.8!!!! Anxiety level lower but not gone. Still having to give him two units of blood a day, but a friend emailed me and said when her mother had this VRE bacteria, the antibiotics they use to fight it can cause a temporary reduction in bone marrow production of blood. I have to remember to ask the doctors about that.

James got to/had to witness a few of the things that I see each time that make me go crazy. It's like when you have a brand new baby and some nurse comes and pokes his toe with a needle and squeezes and squeezes until a drop of blood comes out for some test they have to do. You want to kill the person hurting your baby, who is screaming bloody murder and you just know is thinking (in his undeveloped mind) that you have abandoned him.

First, the nurses have to take this long tube that goes inside the trach and push it into the lungs, then pull it out. Parker's face scrunches up and he truly gets a "tapped wild animal" look about him. His stomach bunches up and you just know he's going to pop that sponge out and his guts are going to fly across the room. Then they have to squirt water down into his lungs to make him cough. That's extra special. More fear, "I'm dying and you aren't saving me" looks. Then he mouths something to the nurse and in my paranoia (because it is all about me) I think he's telling them to get me out of the room. :-(

However, James was rewarded when he told Parker he loved him and Parker squeezed his hand four times. I love you too.

That's all I can write tonight because just sitting up this long has worn me out and I have to reserve energy so I can go see him at 8:pm. I may end up staying here and not going, but the idea of that is still so scary and foreign and my mind plays tricks on me and suggests something bad will happen if I am not there.

However, he has improved today and I only saw him once at 6:am, so maybe he really is telling them to get me out of there. :-)