Complicated: We are all weird cases here

We are all weird cases...

We’ve now had two failed attempts to get a feeding tube placed in Libby.   Each attempt is more invasive and hopes get higher. 

The first doctor  said her bowels were up high.  The second said that her stomach is up very high in her chest cavity, and so he could not proceed safely.  Wait.  What?  I couldn’t listen to anything else- just need my kid to be able to get more nutrients into her body.  Such a heart wrenching fiasco. At that moment the why wasn’t as important as when we can try again. 

Next is a true surgery.  Full anesthesia.  We asked for the full surgical process for the feeding tube in the beginning.  She’s terrible to get an iv into- tiny squirrelly veins.  She doesn’t relax enough to be laid totally flat unless she is under anesthesia.  Fully knocking her out is the way to go, but protocol  states that we go from least invasive forward. 

Of course, I always want to be cautious where her health is concerned, but I have a sense of urgency here.  

While we wait I’m trying to not lose patience.   Coming from the land of pediatric hospitals where we are all weird cases to learn that Liberty is “complicated.”  They said complicated.  

Yes. She is.  She is strong. A joy. A fighter. A hope, and some days a pain.  But she’s also still alive because specialists in the pediatric realm listened to our worries, ideas and, dare I say, our gut.    

So here we are holding in a pattern until we meet this surgeon next week.  Meanwhile, she’s losing more weight and eating less at every meal.  

I know she will be okay until we can get some nutrients into her through the tube.   We fought the idea of this procedure for so long that since we made the decision to get it I’ve become more and more impatient.   Every bite, every meal is a fight.   Her favorite foods.  Her favorite drinks.  Doesn’t matter. It’s a battle.  It’s not supposed to be this way.  

Truthfully, the combination of the Parkinson’s and dystonia will only progress making her less able to chew and swallow food.   These same conditions cause her to be so very spastic that she burns thousands of calories a day.  That my beloved friends is a bad recipe. 

I know there is so much that is out of my control.  I can’t stop her stiffness.  Her loss of motor control.  Her loss of speech. Can’t stop so many things, but have been able to make sure that she gets food she loves.   Now we’ve lost that.  The feeding tube will allow us to get the nutrients into her body and then supplement with whatever favorites she can get down.   

So, she’s complicated.   And a miracle.  We’ve come this far on our bonus time, and I will continue to refuse to lose her this way.  Not this way.  

As we approach Thanksgiving I pray we get the tube by the first week of December.    It will just happen or another solution we present itself.   I will not be without hope. I refuse to give up. It will happen. 

In shared determination we send out love and hope, 

Ileana