Good Days to come?

With the granulation tissue removed, he was having some better days. His daddy and I still had to work together to get him hooked up for his feeds, and he wasn't getting all of what he was supposed to but we were working our way back up.  His daddy was able to take some time off work to begin to work him back up a feed schedule so last week when he had to return back to the routine, I called our home health nurse to come out and help me get more familiar and comfortable with hooking him up by myself - because, 3 weeks in and I had not ever hooked up his feeding tube extension to his button on my own (we had kept the extension hooked up all this time, taped to his side; but with the granulation tissue complexities- we needed to be unhooking him so it wasn't pulling on the tube/button.  

The home health nurse got here and he resisted right away- he had skipped his nap, so that wasn't helping.   We chatted about his general tube cares for awhile and that seemed to help him familiarize enough and we made one last effort to ask him about his tube  (feeding extension) and where it was at - he casually said "oh, in the other room"; I asked him if we should get it and he said "yes"; and then asked if I could hook it up and if he would help, he said "yes, here" and opened up his button and grabbed the tube extension in an effort to hook it up himself!  I was near tears at how good he was being and how brave he is.   I couldn't quite get it so the nurse quickly jumped in- so as to not lose his enthusiasm for it!  This was a contrast because just a few minutes before, he was actually pulling at the button part, pleading not to be hooked up!   I dread the day he asks for the button to be taken off/out; or worse yet- if he tries it himself!  It confirms that we need to focus on his relationship with this tube- it needs to stay positive.  He needs to understand that it is for his benefit, and that it needs to be cared for but also that he needs it.  It's a fine line to walk with a 2yr.old!! 

We got him hooked up and a quick feed in him and I was optimistic that we could begin to get back on track with his feeds.   Over the next few days we were able to get a few added feeds in; so things were moving in the right direction --although he was still was refusing many feeds.   We can't fight this, so we just have to continue to keep it positive and concentrate on getting things healed so there isn't any pain for him....there shouldn't be pain. 

With the decrease in Alimentum RTF formula, we were seeing some decline in his energy, and know he needs the Vit.C to absorb his iron (as his iron stores are chronically low), thankfully his hemoglobin is holding (a recent lab check confirmed that).    So, we start talking about how we have the compounded Vit.C (beet root derived) that we still have not trialed yet, if he is only letting us hook him up 1-2x/day, we could at least maximize the Vit.C amounts with the Vit.C supplement.  Sunday afternoon, we decide that a discussion on Monday with the GI is due.  We aren't meeting his needs with the decreased feeds and we also need to follow up with Surgery as we're concerned over the growing granulation tissue again on the tube...how can we be moving in the right direction and still have so many things to challenge it?   We're trying to be patient.....

Granulation Tissue

Thursday night was a rough night....it 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.