March for Babies

Tuesday, July 8, 2008

Sleep Counts

We made our first trip to the Day Clinic yesterday for "Labs". This means they access Amanda’s port, draw blood and then we sit around for 2-3 hours waiting for the results with all the other families who are doing the same thing. It was well worth the wait as they said she was doing beautifully. The nurse called her an over-achiever! Her counts (red and white blood cells, hemoglobin, etc.) were so good they said we could back off on the Neupogen shots (YAY!), so we get to skip those Wednesday and Thursday and we will see how she is doing then. We go back on Thursday for an outpatient dose of chemo. Then we do not have to go back for a whole week until the next Thursday for another dose of chemo. Hopefully she will continue her non-nauseous streak. Her appetite has been low but we let her eat what she wants when she wants and that seems just fine. It can be a challenge figuring out what she wants sometimes, we have fixed things per her request only to have them turned away once ready. However, I would rather have her turn it away than clean up a mess if I force her to eat it. They also gave us a stool softener to help her move things a bit more easily in the future.

I can tell she is feeling better physically as I saw her sleeping on her stomach this morning. This is a HUGE step. She has always been a tummy sleeper, since the very first few days in the NICU. They would have to turn her every 4 hours to avoid bedsores and to prevent flat spots on her head. She always did better (oxygen sats, heart rate, and breathing) when on her belly. She continues to sleep this way now, only between her biopsy (middle right abdomen) and the insertion of her port (upper left chest) she has been too sore to sleep that way. I think this caused some of her agitation in the hospital last week. She feels most comfortable on her belly, but could not lay that way. Now that she can, I feel better too. We took her to the hospital and she felt fine, the next day was the biopsy and she has been recovering from that ever since, feeling sore and then sick from the chemo. Poor thing. I am glad she if finally getting to feel like herself again.

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