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."

Monday, April 2, 2012

Granulation Tissue

Thursday night was a rough seemed all too familiar -  crying and not wanting to lay down in bed, waking every 1.5hrs - not hungry but crying.  I finally gave him some of his compounded ibuprofen and he slept a good 3hrs. before waking up and wasn't as disturbed when he woke up for the morning but still clearly something not right.  This is all adding up to too much, and I'm just not sure what to do next.  So, I call our GI doctors office and leave the message that something isn't right and we had just had a really long night, that he is having less and less Alimentum but in more and more pain- why is the pain increasing?   It must be reflux related but I'm nervous of what we will be able to do about it since he has not tolerated any meds before.   Also, why is it dramatically worsening instead of gradually improving?  
The GI nurse calls me back, and try to explain everything as best I can to the nurse and after telling her what has been going on, she said she would pass along to our GI and call me back.   Thankfully, our GI calls me back herself, she is concerned over the message that she got....we review what is going on and she agrees she thinks this is all stomach acid production related- that the biopsy's show the "peptic" inflammation, likely from the NG tube and now with the G tube, it will be an uphill battle as the stomach is responding to the foreign object and pushing out additional acid (we've seen the acid seeping out from the healing wound so I know it's a possibility).  

But of course, I'm still worried that the biopsy also shows reactive epithelium in the small intestine and mild chronic inflammation in the stomach.  But one problem at a time, and right now- he's in pain.  But, what is this inflammation from?  And is there a possibility that is increasing the reflux symptoms?   And not the G tube?  I don't know....

We talk about what to do about controlling the reflux so he can heal (regardless of what it is from). Which reflux medication do I think we should try? she asks.  He doesn't tolerate any!  She wants to try Karafate - a medication to help ulcers heal, essentially it coats the GI tract so that the acid can't do it's damage.  Ingredients: sucrose and aluminum.    Well, sucrose is likely derived from corn- do we really want a reaction on top of inflammation already present, on top of recovering from G tube surgery??  

I can't bring myself to say that it is worth the risk- aren't there other options?   We have some straight calcium carbonate powder- recognizing the risk of calcium supplementation on his iron absorption (calcium can interfere with absorption of iron), can we try using that- to coat his stomach?  We discuss that it will be in his best interest to try the karafate, if this doesn't work and his pain persists, he will have to be admitted.  She asks how his G tube site is, and I'm not sure- it doesn't look well to me AT ALL but I don't know what it is supposed to look like.   It doesn't look infected, and that is what we've been watching closely for.   The drainage (stomach acid 'snot') has slowed down considerably but there is this red ring around it that looks inflamed.   She decides he needs to be seen -she wants to evaluate him and she wants surgery to take a look at him.  So we head down for a squeezed in- not so appointment- appointment.   We are seen pretty much right away, the surgery team Nurse practitioner comes to evaluate his tube site and immediately assesses that he has some granulation tissue forming and that it needs to be burned off (silver nitrate treatments).   It isn't going to be comfortable but it needs to be done.  She doesn't really say that it could be the culprit to his pain but I have since read through some support groups and tube feeding foundations that granulation tissue can be very painful- and sensitive.  That would explain all the "owie tube" and not letting us clean or touch his "button", and resisting feeds.  She assures me that the silver nitrate treatment itself won't hurt but that he may be sore after.   So, we proceed to get it done (she takes care of it in the office)....this is NOT a pleasant experience!!  He has a spot on one side of his tube that is actively bleeding so she has to page the surgeon himself to look at it. Little Man is NOT happy and wants to just go home!   The surgeon comes to look at it and by then the bleeding is stopped so it is felt that the silver nitrate cauterized it off.   We are given a steroid cream to put on it at home, encouraging the rest of the granulation tissue to fall off (and hopefully not have to do the silver nitrate again).   

We get home (still screaming from the silver nitrate application), screaming, screaming, screaming.   We finally get him calmed down by taking him for a ride in daddy's 'truck' and when he gets back, we get some ibuprofen in his tube and he lays down for a (late) nap.  When he gets up, he is clearly feeling much, much better.   

First words out of bed the next morning were "play mommy" instead of cries and "mommy I need you".   He was VERY clearly feeling MUCH better!  I was so amazed at how much better.    He played and played- not wanting to be held or "needed" unless he needed a bottle, or a nap.   Sleep was easy and restful.  Saturday and Sunday were good.   Sunday night started to show some uneasiness and I noticed a little lip of granulation tissue reforming - so suspected his pain was starting to creep back in.  Or, was it because we were attempting to ramp back up his formula intakes?   My suspicions and instincts grow daily, as we move towards more healing from surgery and more clear patterns of when things are just not right....something is not right about the formula- but what is it?    It could be just the sugar content that his body just can't handle right now and in that case, we just need to find his balance and threshold.   But it could be an ingredient in the formula and since he threw up from it last weekend, we haven't been able to get more than 8oz in him and he has symptoms that are hard to deal with - his mood, crying and irrational behavior being the top of that list.   Those can be patterns of his chronic FPIES or from the sugar intolerance.   We just don't know yet.    The hard thing is that we will have to push him to know- we will have to go through some rougher days to get some better answers.   

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