Feb 19, 2012

Catch 22

Back in October, Manny and I were in Shands for almost a month.  The goal was to find what was "wrong" with his digestive system that caused it to back up instead of go the right direction.  After many tests and many weeks, it was decided to pull him off all food that went into his digestive system.  Instead we put him on TPN which is "food elements" through the veins. 
Cute little feet. Precious!

The veins were never designed to feed us.  It's a distant second to regular feeds (and that includes by mouth, g tube or j tube).  It's hard on the body, the liver especially.  But some people have lived on it for a lifetime ... more than 3 decades. 

A few days before the decision was made to switch him to TPN, I was getting that "knowing" sensation.  God seems to always prepare my heart and mind and soul for something hard coming.  I wasn't sure exactly was down that road, but I had the hardest time with this decision. 

I remember the day well.  It was grey and rainy outside.  Manny was especially somber that day.  Kaley was not at the hospital with me.  And I just "sat" in the sadness.  I mourned the loss.  I grieved.  It's as if I FELT all the weight of the obstacles ahead of me. 

At that time, I had NO clue that in the next 4 months from that decision that he would have:  8 PICC holes, 2 broviac surgeries (including one that took 4 attempts), one central line infection that almost killed him, one false positive line infection, 2 bouts with cellulitis, a gallbladder surgery, and nearly 100 days in the hospital.  ALL directly related to the decision to start TPN. 
If I prop his hiney, he can move his legs now!

And somehow, I felt it and knew it.  Not the specifics, but the heaviness.

At the same time, TPN has been a wonderful thing for us too.  For those (short) moments when we are out of the hospital and doing well, THOSE moments have been our best.  He's growing, learning, healthy.  He's the best he's ever been. 

That's part of the issue to me ... he's not chronically sick.  He's GREAT and then HORRIBLE.  Nothing in between.  Hospital Manny is so different than Regular Life Manny.  And that's part of what makes this hard ... and at the same time, part of what makes it all worth it.  If he were in pain all the time, well ... let's just say I think it would make life so much harder.  I'd second guess myself on everything.  I'd hunker down and just try to make his life as comfortable as possible. 

But instead, his life is GRAND and fun and adventurous.  We have a lot of fun.  His life is FULL.  And it makes me fight very, very hard to get back to that state of being.  I'm willing to go to extraordinary efforts to do this. 

And there is the Catch 22. 

So how do I do it?  One day, one problem at a time.  Today we prepare for the Gallbladder removal surgery.  Tomorrow we do the surgery and start on recovery.  After that, well, I have plans to try to get off this rollercoaster ride of GREAT and then HORRIBLE. 

And me?  I'm willing to fight, willing to be "all in" until the last moment he is still wanting to fight.  Right now, I don't see that anywhere on the horizon.  So we're "all in".  Just like in Poker ... but in EVERY hand, I hold nothing back.  Every hand I play my best.  Every hand. 


The details of the surgery ... as of right now, today should be very boring. Just a pop in by each of the doctors verifying everything is still on track (and it is). 

Monday, 12:30 is the scheduled time for surgery.  They'll have us down there early of course.  The prodecure itself should take about 2 hours give or take. 

While at it, they're going to try to harvest some abdominal wall tissue to send for research.  It MIGHT give us some hints of what is going on or it might not.  It might have implications for other families.  It might shed some light on future research and clinical trials. 

Apparently, the tissue bank has many muscles from legs, ankles, spines.  (Merosin kids often have those types of surgeries.)  But they have none from the internal organs.  So this is a big deal.  They won't take it if they can't do it safely. 

The surgery will be done by the 2 Senior Pediatric Surgeons here.  One is about 65 and the other about 55 and they've both been cutting their whole careers.  The one surgeon is the one who did both of Manny's broviacs (and knows he had a difficult time with the one).  He also did his muscle biopsy.  They're adding the second one "just in case" since they expect it to be a difficult surgery.  The anesthesiologist is the same one who has been there for almost all of his procedures (about 7 or so). 

Therefore, I think we have the best team assembled that we could have.  People who are good at what they do, PLUS they have worked on Manny before. 

After the 2 hour or so procedure, he will go to recovery.  After that, we're not sure if he will come back to the regular floor or go to the ICU for a few days.  It will depend on how well the surgery goes and if there are any complications.  He will be monitored very closely. 

One common complication (even for "regular" adults/kids) is pneumonia.  I know how they help prevent that with adults but not sure how they will mitigate it for him.  They will also monitor for infection and bleeding.

I will update on Facebook as quickly as I can during and after the procedure.  I will blog after. 

So thanks, in advance, for the prayers for Manny Monday 12:30 EST especially. Specifically that it goes with no complications and that the recovery is as painless and quick as it can be. (I HATE seeing him suffer!)

And some peace for the family.  We've been through many procedures/surgeries with him but this is the most major surgery he's been through with us.  (Similar to the nissen fundoplication he had at 8 months before we adopted him.) 


  1. storming Heaven in LA too! And we are all in with you. Holding you up. If you feel something on your arm that is one of us prayer warriors holding you up as you go on about your day, if you feel a breeze on you, that is the breath of us praying and praising beside you, if you feel tingling that is the Spirit of God carrying you through this! As much as you may feel alone in this you are not alone in Spirit sister! We all love you and Manny and the family. No, we can't completely understand, but God can. Constantly lifting you befoe the throne.

  2. Praying in Las Vegas for this precious child! Beth, if there is a way you can safely post a hospital address for Manny with whatever information cards would need, he might get some mail from his far flung friends!!

    Carolyn (in Las Vegas)

  3. Becky Browder NeustadtFebruary 19, 2012 at 3:45 PM

    Always in my prayers - and in my heart!!!

  4. Love and prayers from me to you. I will be praying tomorrow and will look for updates, as you are able to provide them. Peace that passes understanding ...