Genius Convention

This morning I dropped my mom off at the airport on my way to the hospital.  As I left the airport, I realized how truly numb I've become.  I find it more difficult to cry, unless things are truly terrible, and I cry less often even when I experience joy.  Although this protects me on many days, I also find it discouraging.  I don't ever want to become completely numb to emotion, it's not healthy.

Hope was sleeping when I walked into her room.  When she saw me, she began screaming for me to come and pick her up.  We managed to go the entire day without a sedative!  Hope was sleeping comfortably most of the day and didn't have a need for it.  It was a blessing to know that although she's on a lot of pain medication, she no longer needs the sedative as well.

Today we were finally able to give Hope some food!  She started feeding at 2 mls an hour and appears to be tolerating it well.  We're still not sure if she'll receive her scope or not, that should be discussed tomorrow.  The top of Hope's PICC line is not looking well, it's beginning to get pussy.  This is a terrible sign and could result in us losing the line.

A few days ago they mentioned that there was a small clot at the top of Hope's PICC line.  I never gave it much thought, I expected her to clot without her blood thinners.  Unfortunately, this is a major problem and could turn out very badly for Hope.  With the line infection starting up again, they may be forced to pull the line.  If they pull out the line, the clot will dislodge from the PICC and could go anywhere.  They worry is that the clot would head to Hope's brain and cause some serious problems or a stroke.  This obviously makes us nervous and adds more stress to the situation.  Hope's blood thinner dose was doubled today in an effort to dissolve the clot.  This could easily cause Hope's bleed to start up again.  There doesn't appear to be any easy options these days.

Tomorrow at 1 pm we will be attending a genius convention.  The lead intensivist, 2 cardiologists, anesthetist, GI specialist and the hematologist will all be sitting down with Shawn and I.  During this meeting, we will be discussing the next steps for Hope.  Please pray for us as we go into this meeting and make vital decisions for Hope's future.  Please pray that Hope's clot quickly dissolves and does not cause further problems as well.

Today we were told that Hope is stable and could easily be transferred to the ward tomorrow or the next day.  This means we will have a lot less time as a family and life becomes even more challenging.  I really struggle with balancing my life when Hope is on the ward.  We are working to get our insurance company to approve some private care at the hospital.  With 3-1 nursing care, we are not able to leave Hope alone and truly need the help.  We were denied it, in the past, because Hope is already considered to be under the care of nurse.  We're praying they understand our need to leave the hospital and see that Hope needs more attentive care.

Hope's antibiotics need to run for 6 weeks.  As a result, they don't see any way to have her out of the hospital by Christmas.  We are now hoping to be home before the end of January.  I can't even think about how long that is, it's too hard to face that reality.  We are thankful for your prayers, we truly need them.