Friday, March 18, 2016

Worse Again.

Not much to this post other than Shelbie is worse than she was yesterday.

Yesterday, the cellulitis infection was about 6" in diameter.  Hives began covering the area even over the infection.  This afternoon, the fiery hot redness is easily 8" or more in diameter.  You can no longer see the defining line of the infection for all the welts.  Welts on top of Welts. Welts from her waistline nearly down to her knees, every inch of her skin.

Imagine the worst diaper rash you've ever seen...bleeding, weeping diaper rash and that is what Shelbie's leg and abdomen looks like...only it's obviously not diaper rash.  Obviously.  Benedryl is about as effective as Smarties.  

On top of that, the lymph fluid is still building up and that adds to her discomfort.

She doesn't complain.  Shelbie sleeps about 21 hours a day.  She has zero energy or stamina.  When she is awake, her brain function is slow.  She isn't taking pain meds or anything else that would have the effect of sleeping.

I feel like her body is trying to process so many things right now, it is shutting down.  Not literally...because that would mean she is dying and she isn't dying but what energy she does have is being used for the most crucial functions right now like keeping her heart beating, respiration etc.  There is literally, no energy to spare. During the three hours she is awake, she feels too nauseous to eat anything but maybe a little ramen.

I'm at a loss as to how to help her.  I have no idea how she can sleep with what looks like an extremely painful situation. Even her clothes touching her skin from her waist down is painful.

Monday, we will see the surgeon again to see if they need to open her back up to seal off the lymph vessels.  Part of me wonders if I should drive back to Huntsman and take her to the ER.  I love our surgeon here and family doc but I worry that we are losing continuity of care.

It's worrying me immensely.  Shelbie has a condition called Dysautonomia.  Her body can't effectively regulate its own autonomic nervous system.  When things get revved up, she can't regulate it.  Hives fall into that category.  I think that because the surgery was so invasive, her autonomic nervous system was so shocked it reacted with hives. There was one time a few years ago that she had hives for more than 6 months! They covered her body.  That can't happen again, not on top of everything else.

I got a little sleep last night which helped.  I have only slept about 12 hours total all week long. I can do that if needed but emotionally, I'm done.  Yet, I can't be done.  Shelbie isn't done.  She is brave, so me whining about being a little tired hardly seems appropriate when her suffering is so much greater. She needs me to appear strong and in control of this situation.  She goes to sleep and trusts that I will be close to keep an eye on her, make sure she doesn't stop breathing.  It's heartbreaking and we haven't even gotten to the hard part yet!  However they decide to treat whatever is happening to her with the enlarged lymph nodes is going to be challenging to say the least.



  1. Poor girl! I was hoping she would be a little better today. I wonder like you if it wouldn't be better to take her back to Huntsman's especially since you will need to go down next week for the results. Would she be able to handle the car ride? I think you are right about her sleeping so much, her body is just working so hard it needs all that rest.

  2. Praying for Shelbie and you. (Karen)