Roller Coasters

Wednesday (3/9), started, but didn't finish...guess it just wasn't finished :)

Kids with sensory impairments sometimes use weighted vests.  They are soft cloth with actual weights sewn in.  These vests can give them a sense of security, like they're being held.  The also provide sensory input which can be comforting to some children.  Emily and Abby didn't care for them, but I always thought it sounded kind of nice.

This morning I woke up feeling a weighted vest of peace.  I started to think about what's going on and I even wanted to be concerned, but I'm not.  I feel peace almost heavy on my shoulders, not allowing me to move from it.  I can't say I've ever experienced anything quite like it. 

Abby hasn't had a great few days.  She has had a lot of trouble with her belly working correctly.  We have tried several things to get it working better and yet it remains kind of quiet.  Last night, after her rejecting just an ounce of pedialyte we vented the tube.  Nearly 8 ounces of what I've affectionately termed "belly juice" came forcefully out.  That put us back to tummy rest for another day. 

She also ran 101.5 fever last night (tues), which in combination with the tummy issues, brought the doctor and the surgeon to our room around 11 p.m.  They were both very concerned about infection.  Blood work and cultures were drawn this morning and we are waiting to see what's up. 

She ended up having a pretty good night, and after the fever came down, it's pretty much stayed down. 

My head wants to be concerned about all of these things, but my heart just won't let me.  I feel peace that I don't understand, but am thankful for.

It's a new day...3/10   9:02 am

Turns out Ms. Abby doesn't seem to have an infection...Praise God!  She still hasn't been able to tolerate anything on her stomach and it continues to have drainage.  Her belly seems to be moving a little this morning and although nausea continues to be a problem, we are hopeful she'll be able to tolerate Pedialyte today.

They did another belly x-ray this morning to see if any thing else is going on.  We are at a place where she HAS to move forward.  Tomorrow is one week since her surgery and today is 3 weeks in the hospital.  She needs to start tolerating food on her stomach soon.  They really want her off of TPN before the one month mark because of the potential for liver damage. 

Abby's IV mountain

I think today is the day.  I believe today my girl is going to feel better. 

I am having a hard time praying specifically for her.  I am praying God's will be done in this situation and  He be glorified through everyday of it.  He knows what's going on with her stomach and I trust He's working.  Beyond that, I trust He's working in all of it.  Of course this is longer and harder than I could have ever imagined and there are times when I am overwhelmed and afraid.

Later.... 3/10   8:41pm

Abby's Baclofen pump began beeping today (inside her belly).  Where's Emily with a giant EWWWW when I need it?  Her pump already looks like a bomb in her stomach, now it sounds ominous too.  We missed her pump appointment because she was sick last month.  It's beeping because it's low on medicine.  Her neurosurgeon doesn't practice at this hospital, so there was some drama about what to do.  Sometimes surgeons don't like messing with other surgeons stuff--territorial little animals, aren't they?  In the end, the peds neurosurgeon here was willing to fill the pump.  They will do it tomorrow.  That was a very stressful situation for me.  I've dealt with a whole lot, but the thought of the pump drying up and her tone flying up when her belly needs to be nice and soft and working made me cry. 

Abby started therapies today, PT and OT.  Moving her around made her nauseated and just plain sick feeling.  The doctors decided to rest her tummy the rest of the day because there was still so much draining off when we vented the tube.  This evening we opted to go ahead and give a feeding pump a try because it can go slowly and that's what she doing--going very, very slowly.  We hooked Pedialyte up at only 20cc/hr.  That's about 4 teaspoons an hour.  The first 3 hours, 60 went in and 95 came falling out when we vented the g-tube.  That's not what we hoped to see.  The only encouraging news is that it had very little color, which means it was probably just what we put in, not what's backing up.  We are continuing to try the pump through the night, venting every 3-4 hours so she doesn't get too uncomfortable. 

Her femoral line is holding up at 2 weeks old.  That's a blessing because she's still completely dependant on TPN. 

She also started with what might be common cold symptoms this evening, 99.8 temp, clear runny nose and a little upper airway congestion.  We'll see what all that looks like tomorrow. 

For tonight, my sweetie sleeps

She has a very long way to go, and as you can see from 24 hours of attempting to write a post, it's a roller coaster ride.  It changes almost constantly here.  I just can't imagine going through all of this without faith.  Life is flying around me without apparent rhyme or reason.  Jesus is the rock that I am standing on, knowing that He can't be moved.  I see his hands and feet in my church and in those praying so faithfully for Abby.  I am humbled and grateful for the faithfulness of His people on behalf of my family. 

I pray that He blesses each of you as abundantly as He has blessed me through you.