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."

Friday, April 27, 2012

Tube Change

Discussion with the Surgery Nurse Practitioner (NP) came to the conclusion that Little Man needed to be seen- because of the granulation tissue, the continued pain/aversions, and now this belly button rash (which could potentially be indicative of infection/abscess).   She decided that it would be better to wait until his surgeon could be present as well, and help evaluate what may be going on with his tube- why he has so much drainage/seeping, granulation tissue, sensitivity, pain, aversions, etc... We discussed that changing the tube (different brand, he has an AMT Mini One right now and there is another one that is similar and will "fit" in the same "hole" called a Mic-key button).     So, that afternoon we went in and they checked his site and decided he needed a change -- we have nothing to lose and everything to gain at this point.   Typically the tube is changed at the 6 week mark standard anyway- so we are just shy of that and he needs a change.    We are hoping this is the ticket for his body to accept the tube better, so he can be less averse to it and accept it more - and then accept feedings.... 

They noted that it should not still be draining/oozing as much as it still is, now 6 weeks post surgery.  The surgeon feels that it could very well be likely that his body is simply rejecting the material of the tube, so a change in brand will hopefully change that.    We shall see.   I am hopeful because it already looks better!!  He wasn't nearly as upset, once we were done- he was good to go and giggles on the drive home.  He had a few tantrums that evening and has some red-rosy cheeks and then I remembered....I saw her putting lubricant on a papertowel before she switched the tubes is standard to use a little lubricant to help the tube slide into place and I don't know why I didn't think of it before but he has had previous issues from lubricant!!  I think I will have to have them add Lubricant to his allergies!   

Speaking of AMT Mini-One.   A short time after Little Man got his tube, I sent away for him to get a "Mini Buddy", similar to a "Tubie Friend".   Mini-Buddy is from AMT Mini-One and Tubie Friend is from Mic-key button.   They get donated stuffed animals and give them "surgery" for them to have the medical appliances our little one's have.  It is a visual aid, a teaching tool, a comfort item, and a friend.  And, most of all for us, it has helped Little Man to be more familiar with his tube. 

These are great groups, if you know someone with a feeding tube or getting one- contact them for a buddy! 

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