Home Sweet Home

This is not a drill!  We are going home...no really, we are. 

I just put Abby down to sleep for the last time in her hospital bed.  I am filled with conflicting emotions, but excitement trumps them all. 

I walked down to the cafeteria this evening and wondered what to get for my last dinner from this place.  After 36 evening meals here, I will be at my own table in a few short hours. It feels so nice to know what tomorrow will bring for the first time in a long time.  I am smiling and feel generally peaceful about taking her home.

For a while today I was daunted by a parade of people trying to make sure we had everything we needed for home.  Decisions had to be made about agencies, time lines, follow up care, pharmacies (yes, that is an "s" on there--one for TPN, one for her specialized formula--one for general meds). 

Just for a little taste of what we're dealing with, this her going home daily schedule:

Tube feed (high cal): 
8-11am: 45cc/hr
11am:  20 cc water flush
off for an hour
11:45am vent tube
12:00 pm: 20 cc flush
Repeat this cycle until midnight.
8pm-8am TPN through her central line (along with line maintenance)
Plus meds and whatever else she needs. 

Abby's central line

It's going to be a lot of work, but we are going to be HOME.

What a sweet word it is.  How grateful I am to bring my daughter home to her sisters. 

The next few months will be up and down, I'm sure.  I'm feeling exhausted today with thoughts of so much responsibility.  I am relying on the Lord to provide.  He did not bring me to what He will not see me through. I'm believing that tonight. 

My in-laws have been here caring for Emily this whole time and they will be leaving on Monday.  I'm a little nervous about being there alone with the girls, but Em will go to school.  I'm thankful they've been able to be there when we've so desperately needed them. 

I have a few prayer requests for family tonight, if you all wouldn't mind:

My sweetie pumpkin niece Avery was admitted to the hospital tonight with severe asthma.  She has been struggling for days and this was her third time at the hospital.  Please pray for answers for my sister and our Avery-bug. 

And my uncle Frank is having major back surgery tomorrow morning.  He really needs the healing touch of God.  He lives with more pain daily than any of us can imagine.  Pray that his surgery and recovery are nothing short of miraculous.  He and I share a birthday (Sunday).  I thought for a while that he and I would both be in a hospital room for our birthday. Sorry that your on your own with that one, buddy!  Love you though!

 So here we go, I'll try to keep you posted from where?? Oh, yeah...home. 

***Abby is still very vulnerable to infection, so my friends nearby, if you are sick or have been exposed to someone who is sick, we ask that you keep your distance. We love you guys...we just need to love you from a little further away for a while. The TPN puts Abby at greater risk for infections becoming serious. Thank you for loving and caring for our family so much!