Update 3/21/12

Some days I store away thoughts and cannot wait to blog about them when the house gets quiet. Other days I wish you all had telepathy and could sense what was going on in my world or at the very least, that I could have an assistant who could update this mamba jamba each evening. Details can wear a girl plum out in this situation.

But we have neither hired help or telepathy so it's on my tired shoulders to happily share all that has transpired in the last two days. Obviously last night I crashed on my pleather roll out couch way too early to keep you up. No need to be jealous of my comfy set up because I have even better things going on than scratchy sheets and pancake pillows.

Piper continues to thrive. All bp medications remain off and her stats stay within normal range albeit a little low, they have begun and raised her NG feeds as she is tolerating them well, her gancyclovier dose has been halved as her CMV levels are dropping, her redness is mellowing out, her fluid output is normal and she has begun having bowel movements again, this mornings X-ray looks better than yesterdays and her respitory therapist is pleased with how her lungs sound and best of all was the emphatic "yes, she is more than stable" I heard from the attending doctor during rounds.

Despite all the wonderful things that are happening there are bumps we still are running into. Piper was accidentally given a much larger dose of lasix overnight resulting in a magnificent display of urine output and a loss of much of her puffy, swollen self. Two good things in theory but in reality this can cause a lot of pressure and harm to her kidneys...so far her levels look fine but they will be watching them closely. Pipers blood cultures also grew positive for the bacterial infection that set all of this ICU stay off...the doctors chose to begin Piper on Vancomyacin in an attempt to get rid of it and get rid of it well. Other medications are not as strong or effective as Vancomyacin which is why it is the primary antibiotic used when a fever or infection shows itself. Unfortunately, Piper reacted very strongly to in when given it back in September even after trying again a few hours later and at a slower rate. Even knowing this the doctors still felt strongly that they needed to at least attempt another try and explained that there was a good chance she would not react this time since she is post a bone marrow transplant and her allergies would most possibly be her donors not Pipers prior ones... As we saw when she was given IVIG post transplant. And so far, 5 doses in she is handling it normally.

The best news of all is the wean then total turn off of Pipers paralytic medication this morning. Within 45 minutes she was wiggling her toes and shaking her head when I asked if she was a sweet girl. They are continuing the doses of Ativan and Fentynal to keep her fairly sedated and in no pain but this is a good, good step. By this evening she has semi opened her eyes, scratched her right arm with her left and pointed with her left finger to the nurses stethoscope and nodding "yes" when asked if she wanted to be listened to. She is still so very tired and becomes agitated when respiratory has to suction her lungs and when she needs to cough or is uncomfortable but these are all very normal things to have going on. Just having her nod or shake her head to the music I ask if she wants to hear or to watch her point to her diaper when it is dirty is beautiful.

There are still many things that Piper needs to accomplish to move off the floor but every time she is given a new challenge she does it and with the beautiful grace of God, I pray she will continue to do so.