What's next?

Well it's been a difficult few days for us, but as always a mix of good and bad. 

I'll start with some good, we retested for flu and it was negative, so she was able to come off of precautions!  Yay, the masks and gowns are gone!  She never had any respiratory flu symptoms for which we are ecstatic.



Abby with Jessica...all protected from the flu germy's


The PICC line we hoped to get in Abby just didn't work.  After nine x-rays and 3 attempts to reposition the line, it infiltrated into her arm causing a large, still painful hematoma.  The two days that process took were days 10 and 11 without food.  Not having the line in meant no IV nutrition.  It was very tearful and frustrating for me.

We decided a femoral line was the way to go at that point.  It's quick, and it either goes in or it doesn't.  It has it's limits in that it's only good for about 7-10 days and she had to be put to sleep for it.  A central line would have been more stable, but it would have required general anesthesia and another day without nutrition to get it scheduled.  The femoral line went in without a hitch and we were able to start TPN within the hour.  It still feels strangely wrong to be so happy about a plastic catheter in our child's femoral vein that runs to her inferior vena cava.  Ya, just writing it...wrong. 

A huge, heavy weight in my heart lifted as that bag of fluids began to drip into her.  She was literally starving and physically couldn't eat. 



TPN hanging---and check out the cool Disney lights over her bed.  She can change the colors or have them all!

Getting that line in had so totally been my focus for days that I haven't thought much about what would come next.  I thought that getting nutrition in her would turn everything around.  It helps for sure.  Her kidneys are functioning better, her muscle tone is improving and she's more bright eyed.  But she doesn't miraculously feel like eating (yet). 
For me, this is the hardest part of raising special needs children.  Every decision I make or don't make shapes the life of another person with no ability to reverse such decisions themselves. 



Abby and Daddy

She absolutely does not want to eat.  Maybe she just can't.  When her tray comes in I try to keep it very positive and just show it to her without forcing her to eat.  She gets a sticker for trying a bite.  She generally is happy with one.  Tonight she got her sticker for simply looking at the food.  Sometimes she seems excited about it, but when it comes to eating she won't.  I let her play with bread today, biting and spitting it out.  She didn't want to swallow but seemed to enjoy biting it.  I was just happy she was interested in it at all. 

I'm smiling and being excited for her, but cringing inside.  Why won't she eat?  Her belly should be healed enough to tolerate some food after a few days on the meds for it.  We are at the place where we could spend a month here and still leave with a kid who doesn't want to eat.  We are considering a G-tube, which in itself isn't bad.  She would have a surgery for her reflux and hernia repairs at the same time though.  It would be a big surgery for a weak girl and I still really want her to eat. 

When Emily went through this, the reflux surgery was the hardest part.  She couldn't throw up or burp because they sort "wrap" the tummy to keep food in.  She was nauseated all the time.  It took me a labor intensive year to get her eating meals again.  She still struggles with it.  There is no way I would want Abby or our family to go through that. 

It's much harder than I ever realized it would be to deal with this a second time.  I couldn't have imagined Abby sick like she is.  The bottom line is we have big decisions to make.  Abby will have a test in the morning to see how well she is able to tolerate food in her tummy.  They are planning on putting an NG tube in followed by 8 ounces of glowy liquid that they will follow on a scanner.  I'm assuming they will follow it to the floor based on how she's been today.  It's worth a shot because it won't matter how she gets food in if her tummy's not working right.  The NG tube will also stay in so we can try slow feeds. 

I wish Jeff were here or our move was finished or Emily hadn't just finished being so sick or Hannah had graduated from high school or my air conditioner hadn't broken or the dog didn't get diarrhea this week (probably from getting in to cat food when I'm not there to watch).  I wish that Abby were better and I wish I didn't feel so overwhelmed. 

We aren't created for wishes, are we?  We are created for faith.  Hard, dirty, teary, faith that holds on and believes when everything presses in on every side.  Faith that He is faithful.  Faith that he loves me and Abby even as we are allowed to walk this road.  Faith that there are reasons that I may never understand on this earth.  And praise.  Praise because I am sad for my daughter and I miss my children, but this could very well be provision that I can't see. 

Praise doesn't necessarily mean that I'm excited about this.  I'm not.  I just believe the life of my child matters to God.  I trust that He is in control because I certainly am not. 

I can't begin to say what a comfort my church family has been through prayer, meals and being willing to do anything I needed.  It has blessed (that doesn't sound significant enough) our family immeasurably.  There's no way I could do this without their love and support.  I have definitely seen the hands of Jesus this week. 

Our families have been awesome too.  They are all so concerned and pray faithfully for my sweet Abby. 

As she sleeps next to me, my prayer is that our next steps would be abundantly clear.  I pray that God would not allow me to choose to put a tube in her, if it's needed I pray there are no other options.  I pray that He would direct our path and clearly guide Jeff and I.  I pray that we would make no decisions that bring our child more pain than necessary and that my hopes or desires for her life would not for one minute be greater than God's plan at work in her. 

I would be honored if you all would stand in prayer with me for those things.