Jul 18, 2010

Imagine ... (Prayer request)

Imagine your favorite food.  Can you see it?  Smell it?  Taste it?  ahhhh.

Now imagine never being able to eat it again.  In fact, you're never going to be able to eat ANYTHING ever again.  Nothing.  Nada.  Not even the stuff you kinda don't like.

You can't even have coffee.  Not even a taste.

You can smell it.  You want it.  But the people around you just will not let you have ANYTHING.

Well ... Welcome to Manny's world.

He was 8 months old, going along just fine drinking baby bottles.  Then one day, he was taken to the hospital and strangers decided he needed a tube in the tummy and to be "NPO" (nothing per oral).  Nothing.  Not one taste.

Since then, he has been NPO.

We have a friend whose daughter Abby is thrilled to be NPO.  For whatever reason, eating was traumatic for her.  It has taken a long adjustment to get the right tube and such but it seems Abby has never missed being able to eat by mouth and is now growing.

We have another friend whose daughter I'll call Edith.  Edith is having major aversions to food.  Her feeding team is working with her and the mother to try to help her swallow but for whatever reason, Edith only wants to swallow very bland, soft foods in small quantity (if anything) and her mother still is trying to feed her sausage and pork chops.  Poor baby!

Most kids who have problems with swallowing (dysphagia) actually have an aversion to food.

Not Manny!  He tries to lick or chomp anything that comes remotely near his mouth!  Doctor's stethoscope, gloves, Mama's arm ... anything.  We are careful about eating in front of him too as he looks so longingly at what we are doing.  His pitiful puppy eyes are staring at you.  (And we have NEVER been able to feed him.)  He used to cry when he would see another baby with a baby bottle.

So what's the prayer request?  Tomorrow, Monday at 10 am EST, Manny is having 2 tests.  First is a clinical feeding test.  The speech pathologist, trained in feeding issues, will give him a series of things to eat and drink.  She will continue as long as he can tolerate it.  She will stop if he has any issues.  We are praying he passes this with flying colors.  If he passes this part of the test, he will go to test 2.  This is where the same foods and drinks are laced with barium and he is put in an xray room where they do a video xray of him swallowing.  THIS is the key test.

Why are they doing this?  To see if he can truly swallow.  For a person with "normal" muscles, if something goes down the wrong way and into the lungs, it's called "aspirate" and this person will choke, cough, sputter, get tears in their eyes, etc.  (You know if you've ever had anything go down "the wrong way".)

But tests showed (before we got him) that Manny was doing "silent aspiration".  Which meant food/liquid was going down the wrong way and he was making no indication that it was.  This is a potentially life threatening condition.  They felt it a strong enough possibility that they ordered Nothing Per Oral.

So that brings us to my final concern.  Since he has had no practice in the past 4 months, his skills might be a bit "rusty".  Also, since he's never been given food, he doesn't know how to do that yet.  Swallowing food is a very different skill than swallowing liquid and most babies take a little practice before they master it.  (He's never been given that chance yet.)

Thanks for the prayers and I can't wait to show pictures of him wolfing down a baby bottle and a picture of him with strained peas all over his face.


  1. So hopeful and prayful for Manny! Dear God, You know the suffering of this precious child. We pray for mercy and healing. Please be with Manny and his family tomorrow and during the coming week. amen

  2. First of all, Beth, you explained this BEAUTIFULLY! As an SLP, I truly get that this is a HUGE quality of life issue. Because NOT being able to eat, when you desperately WANT to is awful. Just awful.

    I absolutely will be praying that Manny can safely swallow. It will so enhance the quality of his life to be able to do so. Lord Jesus, pretty please? For Manny's sake. Because You are able. Because You so love him. We give You glory. In Jesus' name...Amen.

  3. I will be praying for your handsome Manny!! God bless his little heart!!!

    Love and blessings,

  4. Sending prayers and hugs that Manny does o.k. tomorrow on all his tests. And passes with flying colors. Can he practice first!!!!???