Please Note

I am not a medical professional. I do not have any medical training. I am the mother of a little girl who has been diagnosed with Aniridia, Wilms Tumor, and Kidney Failure. I am writing about my experiences. I am not always going to be accurate with details, but I try to be as accurate as possible. Please do not use this information to diagnose or treat yourself or anyone else. Please consult with a trained medical professional for any treatment or diagnosis.

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Tuesday, April 16, 2013

Our Room With A View ... at UNC Hospital

Last Thursday night, we were getting the kids ready for bed.  My husband got Piper in her pajamas, and I set up her PD machine.  Big sister was in her room doing her bedtime preparations (tucking in her baby dolls, preparing her books to read in the morning ...  you know, important stuff!)  When I finished, I ran downstairs for a few minutes to take care of some things.  When I came back up to Piper's room to get her in bed, she was already laying in bed.  She had removed the cap from her PD line, threw it in the trash can, and then crawled in bed.  She laid there so proud of herself.  I think she truly thought she was helping us out!  ...  For those who don't know, anytime the PD line cap is removed, everyone should be wearing medical masks, the doors should be closed, your hands should have been adequately scrubbed, the vents shouldn't be blowing air ....  (the list goes on).  Essentially, this was very very very bad, and if any bacteria got on her line, it could create a horrible infection (peritonitis) in her peritoneal cavity.  Again, this would be very bad!  We immediately had to call the doctors.  They advised to not do her nightly dialysis, and come into the office first thing in the morning.

The next morning, we drove the hour it takes to get to the UNC dialysis clinic.  They drew a culture, and they felt that it looked cloudy.  Cloudy typically means peritonitis.  They sent us straight to the hospital to be admitted.  She did not have any other signs of infection, but we reluctantly went on to the hospital.  We sat for several hours in the lobby waiting to be admitted.  (not easy with an antsy 3 yo who really needs her nap right after lunch each day)  They finally got her in a room late that afternoon.  It was a room with a view.  I could see the entire parking garage, and our van was parked on the top floor so I could watch it.  Oh, and behind all of the parking garages, there actually was a nice view of rolling hills in the distance.

We did as we were advised, and we spent the night.  They watched her closely.  She never showed any other signs of an infection.  She had no fever.  Her appetite was better than usual.  She was running, jumping, climbing, and filled with energy.  This kid was fine.  The next day, we told the doctors that we were ready to take her home.  There wasn't anything they could do at the hospital but watch her.  We can watch her at home for free.  So, they weren't pleased, but we came to a compromise, and they approved her discharge.

We called in on Sunday evening for the official results of the culture.  It was negative.  She did not have peritonitis!!!!  So, we felt good.  We did the right things.  We made the right decisions.  We thank God for His protection.

This Wednesday Piper has her first appointment at Duke.  I'm very excited to have this transition complete, and find out what our next steps are.