Loooonnngggg Day.

We had another really long day today at Seattle Children's.  Carla woke up, sweet as could be, just like her old self.  She could talk, drink from a straw, reason, think critically, sing songs, etc.  She was "Carla".  The physical therapist had her go for a walk down the hall and she did great!  The occupational therapist had her play a game with her and color, and she did great.  The music therapist sang songs with her and she was super happy and did great.... she started to fade and get tired and then the echo tech came and did an echo, then the speech therapist came, then she had some lunch and  was completely exhausted.  By the time our transplant coordinator came to visit with Bobby and I about rejection, etc., she got a great big dose of crazy enraged, tired, hulk Carla.  Luckily, she fell asleep for a while, but not long enough, because when they came to get her for another swallow study, she was so extremely tired and livid from being starved down for 2 hours that she was totally uncooperative for the swallow study.  The lady was able to bribe her with some Doritos and got her to swallow a couple drinks of liquid, but not enough to prove that she can really drink without aspirating   So, she is still on a somewhat restricted diet.  It is now ordered that she can have a couple of sips of regular liquids... but that order doesn't seem to stop Carla from guzzling down water out of a straw when she is thirsty   Sooo....what can I say.

This evening Carla had moments of sweetness and moments of hulky-ness.  But we seem to be figuring out that if she is really mad it is probably low blood sugar, so we feed her.  Also, we turn down the lights and try to be really calm.  She apologized tonight for being so mean.  You gotta love her.  She is so frustrated, but when she has her moments of clarity, she is such a little sweet toot.  Here's to everything continuing to get easier and better.  Thank you for your continued prayers....we appreciate it more than you will ever know.

Love, Jen


Anonymous said...

Keep hanging in there. You seem to be seeing more and more improvements. Your devotion and ability to accept her where she is at is amazing. As a mom whom has spent many a day hospital bedside and watched medicines and side effects create craziness for my child, I feel your pain, fear, hope and exhaustion. Take so very good care. Holding you close in mind and heart.

Sue Peterson said...

The "hulk"iness may also be a result of the steroids (assuming she is on them). The predinisone really used to do a number on Mackenzie's mood control. It didn't make her always in a bad mood, but when she was in a bad mood, it was a BAD mood! Just something to keep in mind. Glad to hear she is doing well overall with the recovery!

Anonymous said...

Keep up the faith, she is getting better and you are amazing parents!