Crazy

We have had a few crazy days, and I've jumped right on board the crazy train.  Abby did not go home today.  She will not go home for several days.  We basically had to start over with her feedings.  Here's a brief time line of the last few days:

Friday Morning:
Abby's TPN was stopped on Thursday in anticipation of her reaching her full feed goal.  Regular IV fluids had to be started last night because we stopped tube feeds several hours early yesterday.  She's having such a hard time with feedings and yet we kept pushing her to do more.  Finally Abby pushed back; Thursday feeds 650cc went in, 625cc came out (forcefully and painfully) as residual. It was a miserable day for all of us.

I'm stressed because I packed our bags with only enough left out to get through Saturday.  I'm tired because every day she struggles and we keep upping the feeds like she's tolerating them when she's clearly not.  I'm sad that simply feeding my kid makes her so sick.

Mostly I don't understand why it is that a girl who has eaten every. single. day. for 13 years suddenly needs to throw up when more than 2 ounces is on her stomach.  It's like she just woke up one day and decided not to digest anymore.  Who gets to decide not to digest food???  It doesn't make sense.

The doctors think she's just  being slow.  They say that sometimes neurologically impaired children who have a major disruption in eating have a hard time with their brains telling their bodies what they're supposed to do.  I don't know if that sentence made sense.  Her brain didn't need to tell her body to digest food for a month, so now it's slow on the job.  Any better?  I don't think I can explain what I don't understand myself. 

The bottom line is that we start again today and hope for a better day.  One day has to be the day. 

Later in the day that wasn't the day...

I had really bad day in response to Abby's really bad few days.  I definitely have a breaking point and I reached it when Abby cried for 6 hours straight on Thursday.  I woke up Friday knowing something had to change.  We started feeds as usual,at 75cc/hr  because the TPN was off and we had to try.  It feels wrong to feed her when it makes her so sick, but equally wrong to stop the feeds when I know she starves. 

When the doctor came in and finished listening to my crying-crazy self explain that I couldn't do this another day, a plan was made...again.  We pulled the femoral line.  It was a source of way too much stress.  I knew we wouldn't go home, but we decided the best thing to do was to start over.  With the femoral line out and TPN stopped we'd just have to see what Abby can handle on her own.  Feeds went from 75cc/hr 13 hours a day (what she needs calorically) to 35cc/hr for 3 hours, let her belly rest and hour and do it again. 

We worked this plan through most of the day without IV back-up.  Unwise.  She kept a little more than half of the feeding in, but not enough when paired with the large residuals the day before.  Friday night she became lethargic, bordering on unresponsive.  Her blood pressure dropped dramatically and a rapid response was called.  After blood work and x-rays they decided she had dehydrated quickly.  IV fluids were restarted (fast) and she has slowly come back around. 

Saturday:
Abby looks better than she did on Friday, but we have a long way to go.  Needless to say, the IV fluids will keep going for a while.  If this continues to go on, a central line will be the safest and easiest solution.  TPN is still up in the air for now.  Abby lost 1 1/2 pounds from Wed-Fri.  Weight is a constant concern.

She's handling the low volume feeds relatively well.  She still has residuals, but not the crying or extreme nausea.  Zofran is more helpful with what she's dealing with now.  The bad news is we have a long way to go.  Sunday we will move up to 45 for the next few days and see how she's does.  We'll just keep going until Abby gets going. 

My girls came to see us today and Jeff came in.  Abby's grandparents stayed with her so we could take the others out to the mall for much needed shoes and a prom dress for Hannah.  She got one she likes, but it's not love.  If we have more time, we'll keep looking, if not she'll look amazing in the dress she got today.  Then they all came back and visited with Abby.  As usual, it was hard for the others to say good-bye and hard for Abby and I to see them go. 

Abby's not sure why I'm taking a picture, but it's the only one I got with Hannah :)

The wonderful families at our church have provided meals for us the entire time Abby has been in the hospital.  Today I had a taste of one of them.  Oh my goodness, what a blessing a meal can be.  Thank you so much to those who have gifted our family in that way.  I cook for my kids every day.  Knowing my girls at home are being well taken care of makes doing what I need to do here for Abby easier. 

I absolutely trust God's plan for Abby and my family, but that doesn't mean I haven't felt the pain of this week.  I have struggled and cried.  It hurts--physically hurts-- to see my daughter suffering with such a basic function.  In my head, 2 ounces an hour of milk should be easy to handle.  So many things in the last 5 weeks should have been.  But they're not.

What is, is a plan that I can't see; A God I can see, and my own occasionally crazy self I wish no one would see.