A Month and Counting

So, if we had any questions about if Amelia should or should not be in the hospital, lets just say that there is no doubt.  We had an accidental attempt to wean her meds (all at one) late this week (when her IV line clamp was left in place for about an hour) and she really did not do well.  We spent the weekend recovering from that attempt.  Today (Sunday) she has been doing great, laughing, smiling and interacting with us again.

This week, Kim and I convinced the doctors to let her take food as she wants and as much as she wants all day and all night.  She has done great.  She had some problems with bowel movements that we have been treating as well.  Amelia would scream from time to time and we think we narrowed it down to the need to pass gas or poop.  She seems to be doing better from that as well.

Amelia has made good friends with the nursing staff here at the hospital that she now has nurses fighting for her regularly.

We are still waiting for her new heart.  We are very aware of how fragile she is right now.  Please pray that Amelia continues to do well.  She is on the verge of falling over the edge.  I have to explain what that means.  Amelia has very little reserve heart function.  The doctors have many options to continue to treat her that are progressively more severe.  For the time she is stable.  However, when she gets mad, she throws up.  When she gets agitated, she gets mad.  Also pray that we have continuity of care - meaning that we do not see a lot of new nurses and that we are able to keep a nurse for 2 or 3 shifts in a row.  For Amelia this becomes important because it takes time for the nurse to learn Amelia and they need to understand the subtleties about what and when to do things.  Also pray that we are close to a new heart.  The wait is draining for us.  Pray for Kim and I as we wait.  We hate to ask God for a new heart for Amelia because we are painfully aware that for us to gain, someone will be losing something very precious to them.  Our final request is for us to be able to rest.  Kim and I were able to go home to nap today for about 4 hours and it was amazing.  It was the first time we have slept in our bed at our house in over a month.