Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Saturday, February 4, 2012

Feeding Tube Awareness Week 2012

This week is Feeding Tube Awareness week (Feb. 5-11th).  There are two classes of feeding tubes- parenteral nutrition and enteral nutrition.  Enteral nutrition is when there is a tube inserted to be fed through the stomach/intestines (such as nasogastric, gastric, jejunal,...); whereas parenteral nutrition is nutrition fed through the vein.   Little man has a PICC line for TPN.  He has a periperally inserted central catheter for total parenteral nutrition.   This week, this PICC line will be replaced with a Port.   Little man has had the PICC line for, which is a long time to have a line that is meant to be temporary.   It was placed to be temporary as we had hoped it would be something to give him gut rest and healing, with catch up growth; to prepare his body for the food trials we were doing to get him a tiny menu (and then off the TPN).   The food trials were not as successful as we had hoped, so we have come to the decision that it would be best for little man to convert his PICC to a port-a-cath placement...which is a line that will give him more permanent access.  The port gives us more flexibility as we attempt to advance his diet.

A few things that became clear over the past trials: 1). he struggles to gain weight even on IV nutrition. 2). he struggles to maintain hemoglobin levels even on IV nutrition 3). his body benefits from the IV hydration following a vomiting reaction, and 4). his oral aversions are strong and once food starts making him sick- he loses interest fast.

The PICC can't stay in, it is coming out and needs to be replaced.   The port will cover him for all the above concerns from what we have learned he needs.  The port will also give us some flexibility when he is ready to be weaned form TPN (once we find enough safe foods), we won't have the make the decision about pulling or losing the PICC line before he is ready.  The port will be there until we are sure he doesn't need it anymore- nutritionally, iron, hydration, calories....

The TPN is saving his life right now, it doesn't come without it's own set of risks but weighted for little man, the benefit still outweighs these risks.   We continue to take it one day at a time.  

Please take a moment to read For Friends and Family on the Feeding Tube Awareness website; it gives some  insightful perspectives into the life of a tube fed child.

For twelve hours every day, Little Man is "fed" through this "lines" (as he calls them).   It has changed some of our routines but it has been worth it to see him thriving so well, while we wait for his gut to heal.

1 comment:

  1. We have your Christmas photo up to remind us to pray for Sam. His story will inspire many.

    Thank you for writing this post about tube awareness. We were on "fedding tube watch" into last year. I fought hard against it, but would have done it in an instant if it had been what the kids needed.

    YOU are doing so much to advocate for Sam - keep it up Mamma!