Saturday, April 17, 2010

Rooms in the room

The white blood cell count is down to 100 and the ANC is now zero. We expected her ANC to drop to zero earlier in the week so we feel fortunate that she had several additional days with a working immune system since the transplant on Monday.

The doctors are saying she's looking really good for being almost a week into BMT.

Talitha has resigned herself to the fact that leaving the room is not negotiable. Interestingly, she has created a sort of home within the hospital room that has four separate, distinct places or virtual rooms.

The first is the floor mat where she has the most mobility. Today she pulled together three electronic toys that play music or repeated sounds and she played them all at once over and over. (Definitely a new sound.) This is also where she likes to have two pillows side by side and have us lay with our heads next to each other on the pillows and then read books that I hold up in the air above us.

The second place is the crib. More and more, she will say the word "crib" as her way of asking to be put up in her bed where she likes to have lots of blankets, books, her milk, and sometimes toys or pictures to look at. Sometimes she'll call for interaction but mostly this is her time with a bit more solitude.

The third virtual room is the recliner that is used as a bed for the family member staying over night with Talitha. She uses the word "pillow" to signal her desire to sit up on the recliner where there happens to be lots of pillows, hospital sheets and blankets. This is mostly a reading room used for either personal or group reading. (She came across a book that had some tears in the pages so she kept saying "tape" until I tracked down some clear tape and made the necessary repairs.)

The final area in her floor plan is the rocker. This area of the "home" is really the multi-purpose room where you might find her watching a movie on TV, being held in the morning to get her day going, or taking a cat nap in our arms. She usually makes her way to this space with the code words "hold you".

In watching her, I'm learning that a good attitude and a bit of creativity go a long way toward making life a little brighter no matter the struggle.

(My favorite room in the room is the floor mat. Especially when she has me lay down on a pillow and then plays with toys so I can catch a 30-second nap.)


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