Wake up Mama, it's the first day of school...

It's official, summer vacation is over. Lucy was the first to wake up Monday morning reminding us all that it was the first day of school, silly girl you didn't need to wake up so early. Halfway through the day she asked me if the kids were at camp.  I told her no, the kids were at school, to which she said, "I gonna tend(pretend) they at camp, kay mama."  She misses them so much. My mama...

Home Sweet Home...

I wanted to quickly write an update to let you know that we are home, tired, and relieved to be all together under one roof.  Everything went as expected today.  We were even able to have the surgeon take a tissue sample for a biopsy that is being sent to another hospital for further testing.  Lucy's new line flows like a river.  She is experiencing a little discomfort from...

New LIne Today...

Our weekend was fairly uneventful, with the exception of some pretty erratic heart rates and blood pressures for which we are blaming on autonomic dysfunction.  Lucy likes to keep everyone on their toes.  She is scheduled for a new line placement sometime around nine this morning.  Lucy is looking forward to getting a ride in her bed down to the OR, not sure she realizes what...

Seven days...

Yesterday it hit us...the seventh day melt down, that's what we refer to what happens to our family with every admission at around the one week mark.  After seven days we are all feeling the effects of being separated, stressed, off our schedules... We're all tired, lonely, scared, stressed, bored, worried, craving home cooking, craving normalcy, and in need of a healthy dose of family time....

Fever Free...

For the first time this week our girl is fever free, heart rates are considerably lower, blood counts are holding steady, and her med schedule is, well, ridiculously insane!  It looks like we are on the right track, but despite an improving fever curve Lucy is still not feeling well.  She is extremely sleepy, anything and everything seems to wear her out.  My mothering instinct...

72 hours later...

After three days of growing time, Lucy's blood cultures from Saturday are positive for growth, really.  Typically when you are presenting as sick as Lucy is you would expect that blood cultures would be positive for growth within the the first 24 hours or at the very longest 48 hours, typically.  Lucy is anything but typical and once again she has proven everybody wrong.  Not sure...

Not sure...

Somewhere in this mess of wires, pumps, tubes, and blankets is a little girl...it's like a "Where's Wlado" picture.  We are still not sure what is causing Lucy to feel so sick.  It was decided during rounds yesterday that we would ramp up our antibiotic coverage and add IV antifungals to cover all of our basis.  Cultures continue to be negative, with the exception of her urine culture....