Tuesday, February 24, 2015

The Hits Just Keep on Comin'

When you're staring down the tunnel of a long and stressful spring, you know what you need?  More tunnel!

Originally, we knew Secora was going to be doing intensive feeding therapy this spring.  We looked forward to this with optimism, hope and a dash of skepticism thrown in.  We prepared ourselves for the upheaval in our routine and focused on the benefits that could be waiting for all of us at the end of this road.

And then we found out pretty much all of her teeth had decayed in a sudden and glorious fashion.  So we took a busy and stressful spring and tacked on putting one of our children under anesthesia for the first time.  From pre-op chores to getting her eating again was a 2 week....um, "adventure".

I'm the cookie mom for the big girls' Girl Scout troop, so we kept ourselves busy through February picking up cookies and delivering cookies and counting money from cookies and just generally drowning in cookies.  It probably would have been wise to turn down this responsibility this year, but knowing most of my time was going to be focused on Secora, I felt like I needed to devote time to something important to the other girls while I could.  We got an official start date for feeding therapy and we set up a childcare calendar so the big girls know who will be taking care of them on which days.  I taught a round of lactation classes and then fit in two additional classes on request because those classes sold out.

And then the fates decided that this was going to be an out-of-pocket maximum kind of year.  Secora got sick last Wednesday.  Really, really sick.  Throwing up every 10 minutes for over 12 hours sick.  In the middle of the night, of course, because that's what kids do.  Being the third kid and having more than enough experience with cyclic vomiting in the other two, we opted to avoid hitting the ER at 3am (we questioned the decision over and over though) and instead saw the doctor at 8:30am.  We had tried to give her zofran a couple times, but she couldn't stop vomiting long enough for it to get into her system.  The doctor said we could try phenergan or we could just go ahead and admit her to the hospital.

We tried the phenergan.  It helped, but not enough.  She was no longer incessantly vomiting, but she still couldn't keep any fluids down.  So off to the hospital we went.  Thankfully our doctor could admit us straight to pediatrics and we didn't have to do the ER thing.  We spent 2 nights there for IV rehydration.  She got released Saturday because she was drinking again.  She wasn't eating, but our doctor understands the sensory issues and that OT is not her specialty.  The hope was that Secora would eat better at home in her own environment, with the exact foods she's used to.

We all hoped in vain.  She came home and didn't eat, and didn't eat, and didn't eat.  She's not sick anymore, this is a sensory issue.  Parents will say their kid's not eating after a stomach bug, but usually they actually mean their kid isn't eating much.  She literally was not eating anything at all until yesterday.  Thankfully, she's continued to drink just enough gatorade to stay reasonably hydrated.  Today, with pretty much constant encouragement, she's eating again...about 3oz of pediasure and 1oz of greek yogurt.  We're in a time crunch and tube feeding is on the horizon if she doesn't improve quickly, which generally just makes feeding issues worse in kids like her (because as unpleasant as it is to put in an NG tube, once it's there, that's much easier than eating for a kid with no intrinsic motivation to eat).  After 2 years of her preferring pediasure to any other food and us limiting it so she would continue to eat, we find ourselves sincerely hoping we can get her on a 100% pediasure diet.  Food variety is really low on the priority list when you're looking at losing the ability for oral intake.

And something no one should ever ever ever say to me--"Kids will eat when they're hungry, they won't starve themselves".   This has not been suggested at a "treatment" for Secora in several years, but anytime it's said in my presence, I see red.

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