Saturday, November 7, 2009


This has been one heck of a week.

On Thursday, I had no school. In New Jersey, they give off the first Thursday and Friday of November so that teachers can go to the Teacher's Convention, held in Atlantic City. Since there is absolute bupkis (meaning nothing) at that convention for arts teachers, we never go. Usually, this is preparation for marching band championships, which are traditionally held on this weekend. But, considering that we've been in intensive care all week...

Wednesday night into Thursday was much, much better than I expected. Ms. Clumsy Nurse only woke me up three or four times, which is much better than the previous night. This time, she didn't drag cellophane across the floor with her feet or straighten the medical supply cabinet at 5:30AM. I'm glad that habit was broken.

The Boy spent the entire day on Thursday in bed, alternating between sleeping, snuggling, and watching "All-Star Alphabet." That's a great Elmo / Sesame Street video, starring Stephen Colbert and Nicole Sullivan, who we know from her time on Scrubs. They asked for a chest x-ray in the afternoon. The pulmonologist told us that there were some patches on his lungs that might indicate the early stages of pneumonia, then she went home for the night and told us that we'd know more tomorrow.

Don't you love that? "Your son might have a debilitating, potentially life-threatening and crippling disease, but we'll know more tomorrow. Sleep tight." Frakking hospital staff. Every day occurrence for you, once in a lifetime for us.

Our oncologist told us that it couldn't be pneumonia, because The Boy doesn't have enough white cells in his body to create pneumonia. Thank goodness for small favors. I'm not sure what to think about that, except to note that the antibiotics are supposed to be good for pneumonia bacteria and for the e. coli and other stuff growing the lesion that they lanced on his scrotum.

The diaper changes have been something else. In addition to his scrotum being agonizingly painful to the touch, he's got bleeding, gaping diaper rash due to the excessive diarrhea thanks to the vancomycin and cefepime. Prior to Tisch today, we've needed two or three people to restrain The Boy during diaper changes, because he'd be flailing and thrashing and kicking while he screamed in agony. Tisch figured out how to use a spray bottle and a patting technique to get the area 95% clean; short-term sacrifice in cleanliness with medium-term gain in rash health and long-term gain in my therapy bills for NOT making my infant son scream in agony quite so often.

His fever is still here. All day today, his temperature has been alternating between the 99's and 101's. We did move out of the PICU and into the normal stepdown area, even if we have a crappy stepdown room - it's the room right next to one of the doors to the PICU and right next to the nurses station, where all the beeping and booping computers are located.

It's frustrating, because for every thing that seems to be improving, another problem or issue springs up. We're not leaving here anytime soon. Best guess used to be Tuesday; now it's Thursday or Friday. I don't think we're doing chemo next weekend like we had (very tentatively) planned.

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