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April 27, 2011


Lucy is finally sleeping after being awake for nearly 40 hours, unbelievable!  Surprisingly, for being awake for as long as she was, she was pleasant and interactive when you would engage her.  She is experiencing episodes of break through pain that suddenly wake her screaming and send her heart rates soaring…poor baby.  We are going to have to go up on her dosing to keep her comfortable and hopefully sleeping.  I am praying for sleep, peace, and comfort for our little one tonight as her body is fighting so hard for everything. 

We started Lucy on Clonidine today with hopes of helping her sleep and also to lower her very high blood pressures.  This is a medication that we have been toying with using for some time, but really didn’t want to because we were worried about it bottoming out Lucy’s blood pressures, we would welcome a drop a blood pressure now.  We are using the clonidine patch which is a great alternative way of administering a med for Lucy, if it works, since her meds either have to be given IV or rectally,  a patch makes life much easier.

I was able to get away for thirty minutes this evening to have a massage in the family resource center.  This is a service that the hospital is offering to families for a very reasonable cost.  Thirty minutes was all the time I could afford to be away from Lucy, but not nearly enough time to break the surface.   Tomorrow Lucy and I are hoping to have a healing touch session,  we are looking forward to it.

Last week my in-laws were here with the kids while they were on spring break, it was so nice that they could help us out.   This week Uncle Scott, my brother, is here helping us with the kids.  This is just the sort of stuff that Disney makes movies out of, uncles with no kids watching his nieces and nephew while their parents are away.  We really appreciate his help.  Drew, Uncle Scott, and the kids all came for dinner tonight.  Apparently, the weather has been beautiful, I wouldn’t know since I have been in a climate controlled environment for weeks.  We were able to eat outside in the courtyard.  It enjoyed the climate change and just watching my kids run around barefoot.

Thanks as always for your love and support, thoughts and prayers.   

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Helen A said...

Rest well little Lucy! Let that body recover so you can get home and play.