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."

Tuesday, December 21, 2010

My Christmas wish....

We have been in the hospital 2 full weeks now; we will be here for 1 more week (3 weeks total) before we discuss discharge plans and next steps.   Yes, that means we will be here over Christmas.   It doesn't surprise me.  We were on the road, traveling back from PA- having just received his FPIES diagnosis at CHOP on his 1yr. birthday.   We celebrated our 13yr anniversary in the hospital with Little Man after a tapioca reaction, we celebrated my birthday and Halloween with another hospital admission for a blood transfusion.  We avoided a hospital stay for Thanksgiving- in fact, we had a wonderfully quiet and family centered Thanksgiving.   But now, here we are again- facing down another holiday to be celebrated in the hospital.   

We spent the first week adding components to his TPN: dextrose, amino acids, Iron Infusion, then fats and finally vitamins/minerals.   His body showed us weird "off baseline" symptoms at every addition- nothing serious enough for "red flags" so, of course we pressed on....he needs this gut rest with concentrated nutrition.   It is our ultimate hope, pray, wish that this is what he will need to "reset" some of the wrong steps we have taken on this journey....a fresh start for better management of this allergy. 

The second week we spent working him up to 100% of his needs from the TPN.  He has still been able to drink his plain, unflavored, original Hemp milk - as "icing on the cake" and takes in 200-400calories a day, as his "icing".   We have seen good weight gains, but at this point still too early to calculate how much of that is "true" weight gain, or "dry" weight as he is very well hydrated from the TPN solution.   I have good hopes though that some is true weight gain, and that it not only means he is doing some catch up time (from concentrated nutrition bypassing his inflamed gut) but also that his villi have repaired/rebuilt themselves enough that they aren't stealing all the nutrients. 

Little man has received 5 IV Iron infusions, initially his body responded really well to it by bringing up his hemoglobin a whole point (from 6 to 7 now).   His body does seem to over-react to the infusion though, he becomes hyper (crazy hyper) for the infusion day and following day; then he gets a "strung out" look, pallor look to him the day before he is due for the next infusion.   I have yet to figure out if it means anything, or if it is "just" a side effect.   He has 5 treatments to go, so hopefully it isn't something that continues to build.  

His scope is on Thursday and everyone is anxious for that.  Biopsy results won't be analyzed/read until Monday due to the holiday weekend; so we will wait patiently (some more) and begin cycling his TPN so he can be weaned off (and hopefully be home by this time next week!)

My Christmas wish?   Gut healing, no inflammation visual or on biopsy; repaired and restored intestinal villi and true weight gain.  Oh, and a healthier 2011! 

1 comment:

  1. Hi there Joy-- Let's hope your name is your game this Christmas Eve.
    Thanks for commenting on my blog-- I always like to hear from people. You will get to an easier place, i know it. Check out online-- the founder has a son with EE who was diagnosed later than your son, and is slowly working real food into his tubefeed.
    Hopeful, peaceful Christmas to all.