Day 7

I'm looking across the room at the TPN, lipids, med pumps, and an unused feeding pump.  I remember how grateful I was the first time the TPN bag hung 5 months ago.  I was so desperate for Abby to have nutrition.  Today I only felt sad.  When they finally brought it in tonight, it seemed uneventful.  I wish I felt grateful.  Somewhere in there is gratitude, I'm sure.  It's so hard to feel thankful for something I absolutely don't want again. 

I have to get over it, but alone tonight, I think I can give in to it.  It's just sad. 

Our hopes for home on Friday are all but gone too.  We held Abby's feedings today because of the disaster feeding was yesterday.  Her tummy is making a little more noise today, which is encouraging, but starting the TPN today means she'll certainly need a more permanent line.  Another trip to the OR is scheduled for Friday.  I haven't talked to the surgeon yet, so I don't know what kind of line it will be.  Likely another Broviac or a Port of some sort.  Either way, anesthesia always slows Abby's belly down.  It doesn't really matter how little she gets apparently.  She's just not going to handle it well. 

We don't want to work on pushing her feeds up this week only to have to start over again next week.  Our plan (I cringe even saying it, but we have to try) is to run some very slow, probably half strength feeds tomorrow so her tummy doesn't completely forget it's job, then surgery on Friday.  We plan for and expect the ileus over the weekend and hope to resume feedings on Monday.  She'll also have to continue the antibiotics until the new line is in, just to be sure there's nothing left to cause an infection in it. 

If we can get on some sort of feeding / TPN cycle established during the week, they hope she can head home next Friday. 10 days from now. 

Emily is home struggling with seizures.  The virus she had very likely started a seizure-cycle for her.  She's up at night seizing/ then fussing, and alternating sleeping during the next with crankiness and headaches.  It's been a rough few nights for her poor Grandparents.  I'm praying she sleeps and stabilizes tomorrow.  Other than seizures, she's better. 

A few months ago, seizures ruled our lives.  Tonight, I wish that was all there was to handle. 

I keep thinking of some of the other blogs I read.  A few written by parents of children who have cancer.  Over and over they write about how they just want their children to survive intact.  Don't let their personalities change.  Don't let them lose their abilities.  They are begging God to not let their children lose what my children have lost.  I don't blame them a bit; I still do that too.  I still feel as desperate as I did in the beginning for my girls.  Quieter maybe, but it's still there.  I want them healed. 

This is hard to go through.  Here I am now, on another day 7 in the hospital and all I can do is put one foot in front of the other and walk by faith, obviously not by sight.  I'm still praying for healing for Emily and Abby-- I just don't have a picture in my head anymore of what that means to me.  I'm relying on the Lord to show me what it looks like to Him---and kind-of praying he shows me in less than 10 days!