Friday, January 24, 2014

How long will we be here?

Capri started out having a great day.  We snuggled and played and sang songs with the musical therapist.  She fell asleep in my arms as i rocked her back and forth enjoying the silence.  The nurse decided to do vitals and turned on the blood pressure cuff.  Capri woke up and started to make this junky sound as she was breathing.  I patted her back and rubbed her feet trying to get her to cough but it didn't help.  The respiratory therapist came in to give her a breathing treatment but she just kept getting more and more blue.  I set her back in her crib and watched her oxygen drop into the low 60s.  Capri became lifeless as the Respitory therapist picked her up and held the oxygen mask to her face.  her arms hung to the floor and her head fell back.  Not again.. please not again.  Drs flooded the room and were all talking at once.  one held her jaw forward and tilted her head back so the oxygen could get in.  They bagged her until she was at 100% then quickly put on the CPAP.  Her heart was racing and we thought she may be in SVT so we called the EP doctors.  Her rhythm looked okay she was just in distress so she her heart was working harder.
Slowly her color came back and her numbers leveled out into the 90s.  Both of her lungs have collapsed again.  Hopefully the CPAP will push enough air into her lungs to inflate them and we will be able to get her to cough and get rid of the fluid that is on them.

The rest of the day was quiet.  I couldn't hold her because she was so unstable.  So i held her hand and showed her pictures and videos of A and B. Right before i left Dr. Dearani came in the room to check on miss Capri.  He looked at her chest tube to decide if we could take it out this weekend.  Unfortunatly he decided that she was knicked during surgery and is now leaking fat from her lymphatic system into her chest.  On monday they will put her on a no fat formula via her feeding tube and will need to spend the next few weeks being closely monitored to hopefully avoid another surgery.  We have no idea of when we will be able to leave Minnesota but our goal is to be home by Feb 9th because it will be As first birthday.
I am so grateful for all of the wonderful people in my life who have been calling, texting and sending packages to make this stay easier.  Please don't be offended if I don't answer the phone, its hard to answer the phone and hear the person on the other line be sad.  I don't want to make other people sad, and sometimes talking just makes me even more sad.  Texting is easier, its less emotional.  It doesn't mean i don't appreciate you though.  I do.  i really really do.