"A few days not like herself and then she’ll bounce back." Is this bouncing back? Crying miserably…low oxygenation levels…struggling to know how much to feed her and when…not being able to get close to her belly without her grimacing…leakage of milk and some blood from the tube site…crying with a look of fear and panic in her eyes…walking around connected to tubes all day, unable to stray more than 50 feet from the concentrator…unable to sit up well, use cloth diapers, enjoy normal mobility because of the button not being healed…having monitors that beep and alarm us…fears of the future, fears of the unknown, fears, fears, fears.
Sunday, May 25, 2008
More questions than answers
In a moment of intense emotion Janelle wrote (but never circulated) soon after coming home from the hospitalization where the feeding tube surgery was done :
"A few days not like herself and then she’ll bounce back." Is this bouncing back? Crying miserably…low oxygenation levels…struggling to know how much to feed her and when…not being able to get close to her belly without her grimacing…leakage of milk and some blood from the tube site…crying with a look of fear and panic in her eyes…walking around connected to tubes all day, unable to stray more than 50 feet from the concentrator…unable to sit up well, use cloth diapers, enjoy normal mobility because of the button not being healed…having monitors that beep and alarm us…fears of the future, fears of the unknown, fears, fears, fears.
"A few days not like herself and then she’ll bounce back." Is this bouncing back? Crying miserably…low oxygenation levels…struggling to know how much to feed her and when…not being able to get close to her belly without her grimacing…leakage of milk and some blood from the tube site…crying with a look of fear and panic in her eyes…walking around connected to tubes all day, unable to stray more than 50 feet from the concentrator…unable to sit up well, use cloth diapers, enjoy normal mobility because of the button not being healed…having monitors that beep and alarm us…fears of the future, fears of the unknown, fears, fears, fears.
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