Feeding Tube Awareness Week 2013

I recently wrote this article (also below) Complex Child E-Magazine; Overcoming the Small Percentiles: Our SuperTubie.

Along with writing the article, I made this YouTube video to illustrate the story. I've been a little behind on updating this blog so this article will certainly catch up the 'highlight reel', I hope to still fill in the details with my journal entries at some point. But, in the meantime I wanted to honor Feeding Tube Awareness Week 2013, and Complex Child called for those wishing to share their experiences, to write their story. I wanted to share our story since it it is not within any "norm" - with starting on TPN, going to an NGT, and now a blenderized diet with a G-Tube (due to not tolerating any commercial formula's). Little Man's FPIES is complex, although we have yet to figure out exactly why- but we just keep moving forward in any ways that we can. Overcoming the obstacles in front of us as they arise.

Our son is our Super Tubie! Even though he is only 3.5 years old, he has been on intravenous Total Parental Nutrition (TPN), a Nasogastric Tube (NG), and now Gastrostomy Tube (G tube). Samuel has a delayed food allergy of his intestines called Food Protein Induced Enterocolitis Syndrome (FPIES), and since even before his diagnosis at age one he was overcoming obstacles of small percentiles. From the small percentiles he had fallen to on the growth chart...to the small percentage of children so allergic to corn that he suffered chronic FPIES to even hypoallergenic formulas...to the small percent (according to studies) that cross react to multiple foods (dairy/soy and grains)...to the labs that fell to small percents causing iron and Vitamin C deficiencies necessitating short and long term TPN...and to his latest obstacle overcome--going from reacting to formula and severe aversion to his own G tube, to accepting it, and thriving with the help of a blenderized diet.

IV Nutrition (TPN)

Due to his allergy to the corn syrup in all formulas, the decision was made at 18 months to trial soy. This caused inflammation and enteropathy with blunted intestinal villi (villi are the finger-like projections in your intestines that absorb nutrients). Intestinal villi take additional calories to rebuild, and do not break down and absorb nutrients well when they are blunted. The enteropathy could not be turned around without the extra nutrition and calories that formula (that he was allergic to) provides and thus led to his first course of TPN. An upper-arm PICC line was surgically inserted and we lived for five weeks in the hospital while he received TPN for 20 hours a day. Just past his second birthday, eight months later, the combination of no nutritionally complete formula, and repeated food trial fails causing more intestinal damage and further malabsorption, we found ourselves in another emergent situation of needing TPN. Weighing the risks of central lines and infections, and then deciding that his need for the nutrients to bypass his intestines outweighed all of that was not an easy decision. However, he was very sick following his latest trial, and we had to proceed with the TPN again. We didn’t know how long he would need to be on it since he needed replacement of his nutrients, regrowth of damaged intestinal villi and gut rest. Samuel remained on TPN for eight months while he continued to have his limited diet of a few safe foods. After months of gut rest, and through more food trials and fails, TPN provided his body and brain with the needed nutrients. It also taught us how much his immune and gastrointestinal systems functioned and was literally a lifesaver, even through a life-threatening line infection and sepsis. After a second line infection scare that ended up being an FPIES triggered reaction, and due to repeated intestinal damage and noticeable regressive behaviors, we needed to make the choice to convert to an IV port to continue TPN or challenge a formula in his gut. It was decided to challenge his gut once more with another formula, a corn-free formula with hydrolyzed milk protein, Alimentum RTF, in hopes that we could finally find something to supplement his tiny menu. This is when we moved to the NG tube.

Temporary NG

The NG tube was a temporary stop in his feeding tube journey, only four weeks. It was placed to challenge the Alimentum RTF because he refused to drink it, rather starving himself than drinking it. The NG was very hard on him, flaring his sensory issues significantly, but he kept it for the four weeks while we made the very difficult decision to have a G tube placed surgically. All his medical team encouraged us that this was the right decision, but that it was ultimately our decision. No one knew whether he would start taking enough by mouth within the next six months so that he would not need the tube. We feared it would take longer than that, and did not want him to have the NG tube for six months, only to end up with the G tube anyway. The NG seemed more difficult to maintain, and besides flaring his sensory issues, it was limiting his play. A G tube would become part of him and he could play and be a three-year-old during the day. Plus, he would have the back up for feeding that he needed throughout the day and night.

Deciding on the G Tube

I am a Registered Dietetic Technician. I know the benefits a G tube can provide. My head told me the G tube was the right decision; it made all the clinical sense for a child with these food challenges. However, I am more importantly Samuel’s mom, and my heart wasn’t following my head. I am very aware that so many parents whose children need G tubes do not even get to make a decision, so why was this such a difficult decision for us? Sam could drink from his bottle, but the nutrients in his hemp milk formula were not complete to pull him out of reactions that damaged his villi and caused further malabsorption. Our son can drink and chew, but doesn’t know how to eat to fill himself. Due to his limited diet and pain with eating, he also has a multitude of texture challenges and food aversions to overcome. And that’s when we find enough safe foods to even practice on. He does have a few safe foods, but his allergy triggers outnumber them by far. He does not have a healthy relationship with food. Samuel was no longer failure to thrive but only because we fought it so hard. He is developmentally on track; however, his quality of life is diminished because he needs to eat every one to two hours all day and night and suffers low blood sugar in between. As he gets older and his sensory issues progressed, he would only take bottles at home, warmed to a certain temperature. Feeding him was becoming more and more challenging, and not just for nutrients, but purely enough calories. We knew the G tube would provide him that back up he needed, to provide the calories (and hopefully missing nutrients) he needed in a day. It would allow him to grow, play, and thrive outside of counting calories, and it would increase his quality of life. We were also encouraged being told that 90% of the families that make this decision later state that it was the best decision they made for the care and quality of life of their child.

FPIES Flares

Little did we know then that Samuel would again fall into those small percentiles. The first eight months after tube placement were rough for Samuel, and for us as a family. We once again went into crisis mode functioning as a family, where all the focus was on getting Sam through his symptoms each day. We just weren’t sure what was going on. We saw signs of trouble while he was on the NG tube, but chalked it up to sensory issues and not the tube itself, or blamed reactions to the lubricant they used to replace it time and time again. He had an endoscopy done during the G tube surgery that showed chronic gastritis and duodenitis--inflammation, again. But, what was this from? The lubricant? An increase in stomach acid from the NG? Was it the formula that we thought he had “passed” because he hadn’t had an “FPIES vomit?” It would take us a few more weeks to figure out that it was the formula, and it was making him very sick, inside and out. He was becoming averse to having us even touch his tube. We switched to another formula (ProViMin) in hopes it was the carbohydrate source and not the hydrolyzed milk protein in the Alimentum RTF that he was reacting to. His inflammation diminished in some places and flared in others. This formula wasn’t going to fit him either.

Stoma Troubles

We decided to take a bold move and stop the formula as well as stop using the tube altogether. The tube site or stoma needed to heal. We had trouble with it from the beginning, and he just needed it to heal. He needed to heal. He had woken up from surgery with a fever and quickly developed bile leaking out of his tube. We were granted a few extra days in the hospital to assure it wasn’t some sort of infection. It quickly went from bad to worse and the granulation tissue began to grow from the constant seeping bile/stomach acid. His shirt would rub and it would bleed. He was in so much pain. We tried creams and then repeated silver nitrate treatments (to burn off the granulation tissue), and each time the surgeon’s office tried to assure us that the burning did not hurt, and each time taking more people to hold him down because he was fighting this so badly. We later learned that granulation tissue does hurt, that rubbing against it hurts, and that silver nitrate removal can hurt some sensitive people. It was enough; this was “make it or break it” time with this tube. We had a love-hate relationship with this tube, which was quickly becoming more one-sided. I knew he could benefit from it if we could get it to heal, and find nutrients to put in it. I was determined to make this work for him, knowing the possibilities of the benefits. Remember, Samuel can drink and swallow, but his hemp milk formula and tiny menu were not nutritionally complete. We could never advance his diet quickly enough to avoid nutritional shortcomings. Stopping the formula he was reacting to, along with stopping using his tube was a big gamble that we would end up back on TPN too quickly. It was not an easy decision but we decided to let it be, through the summer, to see if it would heal. We didn’t do a lot that summer--my schedule revolved around his bottle and caloric needs 24/7. It was very important to stay on top of the calories he could safely have to keep him above the line and give that tube a chance to heal. Within days of stopping formula that was causing reactions and intestinal inflammation, the granulation tissue disappeared on its own and has never returned! The aversion to having his tube touched, to even HUG me or have his stomach touching anything didn’t go away as easily. We let him guide us. We took time away from even talking about it--taking a bath cleaned it well enough for us to leave it be--and hope for the best. My instincts were telling me that if we pushed him into using it, he would reject it altogether. Before stopping using it, he had gotten so hateful of it, even trying to pull it out himself! It hurt him so badly that he couldn’t even hug me. That didn’t seem right to me at all and was one of my last straws. I knew it shouldn’t be causing this much pain. People live with them every day and can hug others without pain.

The Blenderized Diet

What was my goal with a healed tube but no formula to put in it? Use the tube for a blenderized diet. This fall, once I felt Samuel was healed and beginning to accept his tube (our Mini Buddy helped with that!), we had home health care services come out to empower us to help him. Within a few visits and the nurse’s help and guidance, we were slowly able to get him more comfortable with his tube again. He accepted that it was part of him, and that it was there to help him grow big and strong. I began to use his G tube for his hemp milk and safe foods, blended by my Vitamix blender. Day by day, he lets us use it more and we are able to get his needed calories and more of his nutrients in daily. His menu is growing and we’re adding in the new foods as they pass to his blenderized bolus feeds to assure his nutrition is consistent and optimal for further growth and development. We are also able to keep him hydrated during/after reactions and keep him stable through the day without the ups and downs of inconsistent bottles. He sleeps better and longer at night. His quality of life, in spite of his chronic illness, is maximized. He has overcome so much in his three and a half years. He is our Super Tubie!

It's Proprietary....

....means the company does not need to release the information of the ingredients.   This very often means we can't take the risk of using their products.  Unfortunately this appears more often than you would expect- especially with allergen acts and labeling laws to help protect individuals.  The sad thing is, I'm not asking for someone else to protect my child, or change anything about the way they do things- but I do need all the information to be able to protect him myself.   The answer "it's proprietary" means Russian roulette to us.  It means I can do the research as far as it will take me to know what the ingredients are typically derived from and take the chance, or avoid altogether.   

Well, this reaction wasn't even from FOOD.   It turns out the lubricant (Surgilube)....which doesn't have a label law since it's not a food but being a chemical, it has what is called a MSDS (Material Safety Data Sheet)    The ingredients are Hypromellose and Propylene Glycol.   I recognize propylene glycol immediately- that is a-typically-derived-from-corn ingredient.   Hypromellose is a substance made using ethanols- and what are ethanols a gas of?  You guessed it.  Corn.  

Of all the things you think you never even have to think about.  But this is the 3rd time he has had reactions to lubricant.  Once was when we used it to help with his severe dry and cracked lips the first time he was on TPN (he was dehydrated on TPN?  Yeah, well...).   Anyway, the next time was the NG tube.  And his scope at the time of his G tube placement showed inflammation - we suspect due to the darn lubricant (that we didn't even realize was being used until the 3rd replacement of his tube; a tube replacement without it resulted in no symptoms and better tolerance of his feeds).   

I am still kicking myself for not registering that she was using lubricant to replace his Gtube last Friday.  Yesterday afternoon was the first day he started showing no further symptoms- since Friday,he's run through the symptoms of flushing of his cheeks, loose stools causing an itchy, sore diaper rash (acts yeasty but doesn't look yeasty), decreased appetite,increased whining, decreased play, and some sleep disturbances, 5 day of symptoms from a tsp or less of lubricant!  Lesson learned, finally....no more lubricant.    

I called the NP from the surgeon's office and spoke to her about it, verifying that she did indeed use a small amount of lubricant.  She was baffled that this would cause symptoms but assured me that she would add this to his list of allergens on his chart to alert others to help us avoid this in the future.  But like my hubby pointed out- she wouldn't have checked allergens before using lubricant anyway!  It will be there, for verification and alerts but we still will have to remain vigilant.   Corn allergy really, really sucks- we aren't just avoiding foods....

Either way, we're past it.  His tube site looks much better!!  He isn't acting like it is as tender but it is as if he is just now starting the true healing process.   We haven't used it in 2 weeks, or longer? So discouraging, but just trying to hold out hope that if we let him guide us and let it truly heal- we will be able to use it soon.   He is drinking 2oz. of the Alimentum with every 4-5oz.bottle of hemp milk so he is getting some of it everyday- which is really good because once we are able to use the tube, we won't have to do as many "feeds" and yet will still get the benefits of the feeds and using the tube to keep him thriving and safe, and his quality of life and ours, increased.  We still hold out hope to get there anyway....

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 out....it 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! 

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.