Way Too Long

Going Home!

We were at Riley for 3 weeks.  It felt like forever.  Although we wanted to go home SO bad, I am glad the doctors and nurses did everything they could to make us comfortable taking Audrey home.  I felt very comfortable caring for Audrey when I got home.  Honestly, it was very difficult.  I was so used to having help and suddenly I had to do it all myself.  It was exhausting.  Also, I was used to being able to sleep (as best as one can in the hospital) without having to worry about Audrey.  We were very restless for several weeks.  We were so afraid something would happen during the night and we wouldn't know.  Eventually we learned to trust the monitors.  They actually came in handy.  We got used to what range was normal for her heart rate and we could tell when she wasn't feeling well or uncomfortable.  Her oxygen monitor let us know if she needed suctioned.  We only needed to use her monitors while she was sleeping.  During the day she did not have to be hooked to anything.  The only machine she needed during the day was her suction machine so we could prevent her trach from getting clogged.

The staff at Riley also took care of our transition to home.  They made sure our medical supplies and equpiment were delievered.  I had never delt with anything like that before so I wouldn't have known what to do.  They also set up home nursing for us.  They worked with our insurance to find out what was covered at what was not.  They also gave us money (through a donor) to provide additional nursing hours that wasn't covered by our insurance.  They went above and beyond for our daughter.  We ended up not using the additional nursing hours, so that money was used towards another child in need.

Audrey towards the end of our stay