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 20, 2012

More Granulation Tissue

Ok, maybe I left out most of the "good days" out of the last update!  But getting comfortable with his tube and tolerating the feeds WERE good days...even though they were sorta short lived.  It was hard to see him slide downhill so quickly, and discouraging. The granulation tissue came back with a vengeance!  It seemingly is not there one minute and popping out a minute later- it happens fast.   It is a little "lip" around his tube site that is pink/red and inflamed, it contains tiny vessels and so it weeps and bleeds, and when rubbed, weeps and bleeds some more.  It is the body fighting the wound- not quite letting it go to scar tissue.  Many people with tubes deal with it, some off and on. They are surprised that he is having such significant issues of it so soon but it isn't unheard of so the thought is just to treat it like anyone else.  
The issue comes because he will not let us touch him when this granulation tissue begins to form, and then we have to go get it burned off so then he becomes even more averse to being touched....and then we're stuck in a vicious cycle of not getting his feeds in and him having negative associations, pain/sensitivity with his tube site.  They say that the granulation tissue should not be causing him pain, that it doesn't have nerve endings and is not painful.   Well, little man tells us another story and is clearly in pain!

We are worried about him getting his nutrients, he needs the formula until his diet can be built- and since that is many months away- is the reason FOR the tube, so to go through everything he has and then not be able to use it is so very frustrating.   

We went in on Monday morning to get the granulation tissue looked at again; sure enough, she had to burn a significant piece off- he was more upset about being held down than about it being painful....I can tell his pain isn't all about granulation tissue, there must be something else.    We had the Nurse Practitioner hook up his extension while we were there and do a "feed"; but we didn't leave it hooked up; and although we were able to get one more "feed' in that afternoon, and one on Tuesday but then Tuesday afternoon, we brought him back in to get the "lip" burned off again because I guess if you stay right on top of it at first signs, it will help it stay back a little longer.  When I say, "burn"- it means to use Silver Nitrate sticks and cauterize it off.  It turns the area black and gives his skin a "blueberry" stain (looks like ink), and then it eventually dries up and falls off.   At this appointment, the nurse had to clean off this dried up residue quite a bit because he had been SO sensitive, he was not even letting us CLEAN it!  She comments about how the leakage and dried stuff can make his skin more sensitive, causing some erythema (redness/rashy).  I'm not sure if the erythema is caused by the tube/site leakage or an issue with the steroid cream we need to use to help treat the granulation tissue between silver nitrate treatments....could be both but he doesn't always have this redness.  Anyway, she asked about getting him in the bathtub.   They told us not to bath him until he was healed, 4-6weeks!   We are just now on the 4week mark and we just honestly were not taking any chances of him getting an infection- especially since at the last time he had the granulation tissue removed, he had a spot that opened up and bleed.  Why take chances?   He's had bed/sponge baths for the whole 6mo. he had his PICC, what's another few weeks?   Well, we got the clearance to do some baths, that has helped a lot with keeping it clean! 

Wednesday, he wouldn't let me touch him AT ALL, he even fought and cried during diaper changes, afraid I would touch his site too?  Or was that even painful for him (moving his belly to get the diaper on and off and him cleaned up)?  His daddy was at work and besides, we have already decided we will NOT be holding him down to hook/unhook his tube extension- between him having a PICC line that needed cleaning/site cares (involves a piece of clear tape, taped over the line that needed to be ripped off and sterilized under and then replaced) once a week for 6mo., not to mention all the lab draws and multiple other hospital tests, procedures, etc he's endured- this kid has strong aversions to being touched unless he wants to be! STRONG! (and strong he is!).    So, all of Wednesday he did not get any feeds at all.   I am really getting uncomfortable with this as this is not getting better as quickly as we had hoped and it is too many days without the formula, with the nutrients he needs.   Of course he still has his hemp milk formula, and millet and peaches but it isn't enough anymore....   

Clearly it will be weeks, possibly months before he is not so averse to the tube and letting us hook him up the multiple times/day we need to- we discuss how we need to come up with some new plans.    We have previously looked at another formula powder called ProViMin- a powder that we could add to his Alimentum formula and concentrate it, allowing him to get more nutrients per feed and having to be hooked up less times.  It is Proteins (sodium caseinate and amino acids) and Vitamins/Minerals, no carbohydrate source and low/no fats- it is for metabolic conditions but it seems perfect for him....except the sodium casienate which is a milk derivative.    The casein in his Alimentum RTF formula that he is on now is hydrolyzed to be hypoallergenic to those sensitive to milk proteins, sodium caseinate is not.   We would be taking a risk of sensitizing him to dairy, when he otherwise seems to be doing fine on it via the hydrolyzed form in the Ali RTF.  But the benefit seems to be outweighing the risk more and more....

We called surgery back as instructed on Thursday to check in with what next steps we should take for the granulation tissue.  We discuss that over the last day, how he has resisted being hooked up, seems to be in pain, and something new I've noticed is how he is guarding the tube site- when I pick him up, he will automatically C his back as to avoid his stomach rubbing against me - it is curious that this is causing him so much pain and discomfort (especially considering the high pain tolerance this kid must have to be in the chronic pain he has lived with his short life). I ask the Nurse Practitioner if there could be something on the INSIDE that would explain these symptoms, she agrees that this is not a good sign, and he could have an abscess or something.   Under normal circumstances, he would get evaluated by doing a oral contrast study or ultrasound but she says these tests require him to cooperate - which she knows he will not do (STRONG aversions!).   He will need to be sedated and unless it is an emergency, this has to be scheduled.  So, it is decided that we will take the wait and see approach.  Wait to see if the sensitivity goes down, or if the redenss/pain goes up (abscess can become infected quickly so if he has any symptom concerns- we are to take him to the ER immediately.    

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