Feeding Tube Awareness Week: Grateful for our Hardest Decision

For Feeding Tube Awareness Week this year I wanted to share something I wrote last year. I wrote it for a fellow FPIES mom friends website, Awareness Critters, to raise awareness to both rare diagnosis and tube feeding. 

I want to share how much having a feeding tube has positively impacted our son’s life.

The decision for our son to have a feeding tube has been one of the hardest decisions we had to make for any one of our children.  I want you to know, our choice to proceed was the best choice we made for the health of our fourth son who was born with a rare condition called Food Protein Induced Enterocolitis Syndrome (pronounced “F-PIES” for short).

Having FPIES doesn't mean he has to have a feeding tube, but he does.  Having FPIES does mean that he has a delayed food allergy condition. There are no tests for this type of food allergy and the only cure is to avoid foods that trigger this delayed allergic response.  Some babies/children are allergic to 1 or 2 foods, while others (like our son) can be allergic to multiple foods which can further limit the diversity of the diet. Making things more complex for him, foods like soy and corn; which our son is allergic to, are in/on so many foods (sprays and waxes on fruit, can linings, plastic materials, animal feed, preservative and additives, etc) which makes his variety of safe foods became even further limited.

FPIES is a rare and often misunderstood diagnosis and, seven years ago, when our son was first diagnosed, much less was known as we searched for best options to fit his needs – to provide the him nutrition to thrive and grow, nutrition that he wasn’t allergic to.  It was a constant balancing act that we were struggled with everyday.

Before he turned 3yrs, a feeding tube was discussed by his medical team for months as a means to help him thrive, and despite not currently having a safe formula to put in the tube, it was hoped that it could provide him with some consistency to escape his cycles he was trapped in due to his allergies and limited diet. The cycle of: not enough nutrition, trialing a food in hopes of finding nutrition, inflammation causing colitis, pain from the reaction; and malabsoprtion leading to anemia, low blood sugar and acidosis, vitamin deficiencies, and weight loss.  Keeping him further trapped in the cycle was not enough nutrition to make up for the malabsorption resulting in weight loss and further anemia, vitamin deficiency, and other unknown internal disruptions to his body.  And repeat with each food trial, each failed food, each accidental exposure or ingestion.  

A feeding tube should have been an easy decision. But, would it really help him?  We knew if it would not help his allergic condition (FPIES) but they assured us they were confident it would help him, somehow.   The final decision was left to us. 

No one would tell us this was the right decision.  We knew the odds were that it would help him; but having a tube doesn’t make allergies go away or less allergic to your allergens; so how could it help him? We were going through so many emotions….

We decided to proceed forward, a large part of the decision now was because he was currently on TPN (Total Parental Nutrition) via an IV line in his chest.   Trapped in that viscious cycle was a little boy who still had to enjoy eating and he was losing that battle, he had begun to refuse foods that provided nutrients he vitally needed; combined with villi damage from food trials left him needing TPN.  But, after 8 mo. on TPN and before committing him to a port for continued and long-term TPN, his medical team wanted to trial one more formula and we would do this through an NG Tube which would be his first tests of how his body would handle enteral nutrition.  We always remain hopeful that his body will accept the nutrition it needs but after a few weeks on this formula it became clear that even though he was not having a typical acute FPIES reaction to the formula; his body was not accepting it (initially by his outward demeanor, pallor, and sensory flares and then later confirmed by inflammatory markers in his blood and stool).  We still don't full undestand this reaction to the formula but by this time, we had already committed to the G-tube and moved away from TPN. What would we do now?  Had we made the wrong decision?

It was a difficult time, our little boy was hurting and he needed nutrition.  We decided to begin moving forward with a blended diet of his safe foods to start, with the hopes that his nourished body would begin to heal itself and, with nourishment we could slow down his food trials to the pace his body needed for recovery between trials and we could, hopefully, slowly, add more foods as we expected to do when he was first diagnosed.  He fell into a viscous cycle and now his tube could break him out of this!  We had hope! 

It has been a slow process but we have been able to add a few new foods -- to his diet and his blenderized feeds - every year since then, filling in his nutrition.  And, along the way, he thrived. 

Having a G-tube with safe nutrition allowed us to finally not have to worry as much about his daily caloric intakes, how we would coax him to eat enough, doing ‘dream feeds’, staying home to prepare his foods safely and fresh.  And it allowed us so much more.  For the first time in years, we were able to keep his blood sugars stable, he started to sleep through the night – not waking up hungry, and he gained weight and, in time, it helped with his severe anemia.  We relaxed around meal times, allowing him to eat his safe foods for pleasure.  We relaxed our schedule at home, not having to plan the day around when, where and how he would consume his few safe foods. This allowed us to do more things outside of the home and expose him to more of life and less of hospitals.  He has truly thrived.  We are truly grateful for this hardest decision.   

Blenderized Diet: Our Tips & Tricks

Feeding Tube Awareness Week 2015

Little Man has had a feeding tube for over 3 years now, first starting with TPN (IV nutrition via a central PICC line), then an NGT tube followed by his surgery for a G-tube.  The G-tube has normalized his life, living with several food allergies that limits his diet.  The G-tube allows us to provide his safe foods, blenderized, for his daily nutritional needs.  He is strong, growing, and thriving. I wish I could have told myself 3years ago how much the G-tube would change his life.  But, the G-tube itself is only part of the reason of the success he has experienced because of the G-tube.  What goes in the tube is the other part.  He has so many allergies, finding him a safe, nutritionally complete, diet was a daunting challenge of managing his FPIES. At 5 years old, his diet remains limited but his life isn't.  That is because of the freedoms allowed from his G-tube.  For Little Man, he thrives because we are able to do bolus feeds of his safe blenderized foods throughout the day.  We can't use gravity feed or the pump because of the thicker consistency of his feeds, but we have learned the best ways to provide his blended foods through his tube. 

I thought, in honor of Feeding Tube Awareness Week 2015, I would share some of the tips and tricks we have learned to making his bolus/blended feeds more successful, convenient, and less messy! 

First, this is how we dry out his tube- we rinse/wash it out after every feed.  We only get 4 of these a month from insurance, 1 per week, so we must keep reusing the same one as long as possible.   I wish I could take credit for this ingenious idea but I got it by following another great resource Mic-key's on the Go when they posted about it one day. Be sure to follow their page- they post some great things! 

Next is this kitchen appliance I couldn't live without!  We were fortunate enough that my sister donated her Christmas bonus to Little Man's needs one year -- this was needed so we purchased it, even before we knew he would need it for a blenderized diet for his G-tube. 

These two pictures show our storage methods.  The top picture is the every day needs of syringes- kept out on the counter, ready to be used for the bolus feeds. We wash them as many times as we can before the rubber tips wear down and are too tight to be used (wish they would last longer!) The bottom picture above is the shelf in the pantry- handy in the pantry, for quick restock of his supplies, including his tubes/extension sets. 

Next up, mason jars.  Mason jars work excellent for storing feeds- I can keep extra feeds in the freezer for back up and thaw easily in the jar (in the fridge of course). I label the feeds with the date, for food safety.  If it goes into the freezer, I also will mark what is in the jar but these jars are just ready for the fridge.   This is Little Man's current mix of purred pork roast, peaches, and goats milk. 

Next, I would like to share a bag I purchased.  I purchased this from a fellow FPIES mommy via a Thirty-One Sale she was having.  I had actually saw a post for another bag and how easily they fit the same mason jars we use for his blended feeds so I ordered that bag and got this bag half price -- and found this bag to be even better for holding his supplies -- and keeping them at a perfect temperature!  In the pocket of the bag, I keep some supplies handy - some wet wipes (because blended feeds can get messy), an extra tube (because tubes clog!), a syringe, bottles of fresh/safe water.  

This is what the inside of the bag looks like- an ice pack (not included with the Thirty-One bag but purchased separately) designed to hold soda cans, neatly holds our 6oz. mason jars with feeds in place in the bag; while the Thirty-one bag holds up to the frequent uses, washes clean for spills and keeps foods at the right temperature.  (disclaimer: I am in no way involved with Thirty-One sales and am just a happy customer!). 

This next picture shows the syringes ready to go for a 'feed'.   The extension line is 'primed' and ready with fresh/safe spring water, and the 2 syringes are filled with the blenderized feed.  If little man is not in the kitchen, I can easily go to him and I take along a damp washcloth to wipe up any drips (they happen!) 

This is a trick my husband discovered, if you wet the rubber end of the syringe before inserting it back into the tube, it slides in easier (for these repeated uses when the rubber end starts to wear down and make the syringe tight).  

A final photo tip is another one my husband discovered - a clogged tube that will not push through the dispensing end of the tube can be sucked out through the button end with a syringe!  This has saved us from having to throw away countless tubes because of a stubborn clog!  

To learn more about Feeding Tubes, be sure to visit Feeding Tube Awareness Foundation! 

A Blenderized Diet for Tube Feeding

Little Man has a G-tube.  This tube was surgically placed in his stomach in March of 2012, by the fall of 2012, we were beginning to use it for his blenderized feedings...."feeds" as we call them.  His safe foods get blenderized with a commercial grade blender and this is his 'diet' - his 'safe' diet.  This is what assures he thrives.   A blenderized diet has become a necessity for him due to his multiple allergic 'triggers', his corn 'trigger' being the most detrimental to his ability to tolerate pre-made, complete nutrition, formulas.  His FPIES triggers from minuscule amounts of his allergen - from contamination to trace ingredients, to hydrolyzed proteins.  All result (for him) in severe inflammation, and often villi damage, in his intestines causing malabsoprtion of nutrients.  A bit counterproductive to achieving optimal nutrition for growth.  A blenderized diet of his 'safe' foods- foods that his body accepts as nutrition instead of perceiving as an invader (as the body is capable of doing with this allergic syndrome called FPIES).

I wanted to take this week of honoring Feeding Tube Awareness Week, to provide a peek into what his blenderized diet looks like.

It starts here, well- it starts at the store or from our farmer supplier but here is where his daily diet starts.  A freezer full of foods ready to be prepared for his 'feeds' (or 'blends').   This is mostly peaches.  Processed and purred to be ready to be defrosted and then added to his daily feed. Peaches are a safe food for him but not shelf stable, canned, jarred or other prepacked frozen peaches.  All of those peaches have additives, additives that cause Little Man to have symptoms.  So, we get the safest source- fresh from Georgia in early summer.

 The top of the freezer is some foods we have purchased, and have planned 'trials' for.  There is also some papaya in there- that has been off and on "safe".   Papaya itself is safe but papaya (among other tropical fruits) are frequently 'gassed' to help in their growing and that 'gassing' is where corn is introduced and we have seen symptoms that disrupt his quality of life from even this seemingly small amount of corn, so we have to limit how much we give him and ration it when we feel his body can handle these symptoms -- he tolerates papaya itself and it provides Vit.C so we find ourselves bargaining with FPIES this way some times.  But that is another post, for another day.   Today, we're talking about his blenderized diet for his tube feeding.

On the bottom of the freezer is his safe pork- ready to be roasted in the crock pot (as pictured to the left). We purchase a half a hog at a time, and have the butcher process it into varying size of bone-in roasts.  I leave the bone in for the roasting time and I give it a long roasting time to help some of the components of the marrow to leach into the broth that I use for the liquid of the blend. These nutrients provided in the bone/marrow are providing Little Man with some essential nutrients he can't otherwise get (doesn't have enough safe foods).

Looks yummy huh?  His brothers tease that it looks like a chocolate milkshake! Not quite....

There are several reasons for a blenderized diet, it has several advantages and a few disadvantages and may not suit everyone.  It is perfect for our Little Man, and it is what is keeping him thriving. We are grateful for his tube to provide his much needed nutrition this way.  I am daily reminded of this and, during Feeding Tube Awareness Week, I honor this means of providing optimal nutrition to keep this little boy allergic to so many foods, thriving.

Tube Feeding Awareness Week 2014: Nothing Can Hold Us Back

Little Man has had the assistance of tube feedings (parental and enteral) for his optimal nutrition for almost 3 years now.  He originally had 5 weeks of TPN in December of 2010; which restored his damaged villi from a soy trial (that was not safe). He did well for months but then a bad reaction that set off a spiral that set him back and, in the summer of 2011,TPN became necessary once again.  

Little Man has villi damage with many of his reaction flares and without the complete nutrition of a safe and tolerated formula, his body was not able to recuperate from multiple "smaller", and sometimes more chronic reactions following the acute reactions.  He remained on TPN from August 2011 – February of 2012 when we decided he was ready to challenge his gut again, and he received an NG Tube to trial his 6^th formula, a corn syrup free formula, Alimentum RTF.    In March of 2012, he had his G tube placed.  It was in the weeks following the G-tube placement that his body made it clear that it was not able to accept the Alimentum RTF as nutrition, much like so many other formula’s and foods before.    It was then that we proceeded with the blenderized diet that he is on now.  One of our comforts when the decision to place the G-tube was being made was that we could blenderize safe foods.  With his strong oral aversions and the growing nutritional needs of a growing boy, he was not able to eat enough of his safe foods daily to maintain at ‘baseline’ much less when recovering from a reaction when his body needed that nutrition the most but when he ate even less.  There were several factors that went into that decision to place the G-tube – the most important factor of course was for optimal nutrition to grow and thrive.  The G-tube has made such a significant difference in our ability to move past surviving to thriving as a family and most importantly, to his quality of life and thriving through this allergic syndrome.  

This year’s theme for Feeding Tube Awareness Week is “Nothing can hold us back”.  So, I wanted to take a look back at just how far we have come.  Come, take a stroll with me (I can't believe it has been almost 3 years!):   

In 2012, Feeding Tube Awareness was hosting its 2^nd ever Feeding Tube Awareness Week.  We were fairly new to Tube feeding ourselves, being on TPN.  I had just written this post: TPN.  Look, Oley Foundation even commented on it- they are this year’s official partner organization with Feeding Tube Awareness for Feeding Tube Awareness week!  I hadn't heard of them before that, but have learned a lot about them since and they are an excellent resource for “Help Along the Way”  (Help Along the Way is their most recently launched program, how fitting for the tools and resources they provide)!   

For Feeding Tube Awareness Week 2012, I had just written about where we were at with our "Super Tubie" status and how we were in the depths of making some decisions about his continued nutritional needs.  That very week, Little Man was hospitalized due to a shock reaction (at home we didn’t know if the reaction was sepsis because of his line or an FPIES reaction, so in to the ER we went); thankfully it was not sepsis in his central line for TPN but this 2^nd scare of sepsis (having had it once already) was enough for us/his GI doctor to push for the ‘gut challenge” and do some food trials to see how his gut could respond and recuperate on its own- without TPN.   We were grateful for what TPN had given us, had given him but we knew we needed to keep his gut active and now was the time.  He got his NG tube placed the following week and the G-tube a month later.   Little man continues to process and cope in his own ways.  Seeing challenges through the eyes of a child can put things into perspectives, read about how Little Man views his tube: For when I am weak I am strong. 

For Feeding Tube Awareness Week 2013, I wrote a story for Complex Child EMagazine sharing how Little Man was “Overcoming the Small Percentiles” and then made this video to honor FTA week and how far Little Man had come – from TPN to NGT to G-tubes to keep him thriving and growing.  

This video I made last year is Little Mans’ “nothing can hold us back” story.  

The feeding tubes he has had served their function to save his life.  I am always and forever grateful to those that pioneered the field of TPN; because at a time when Little Man was simply too ill to tolerate anything but nutrition that directly fed his brain and nourished his cells, a time when his little body had been pushed so hard, pushed to the edge, repeated reactions and stress to his body without the nutrition and medications to help him heal and necessitated this form of nutrition.   I am appreciative to the moms that started Feeding Tube Awareness Foundation, even as a nutrition professional who knew the ‘other side’ (nutritional) of Feeding tubes, nothing could prepare me for that being my child needing one.  Feeding Tube Awareness Foundation is there, to help normalize this medical necessity, to help you feel not so alone, to know there is a place where other parents share experiences that may be able to help you when no one else understands what you are dealing with. 

Today, Little Man’s G-tube provides him over 50% of his nutrition – via a blenderized diet of most of his safe foods, given in bolus feeds throughout the day.  This keeps his nutrition optimized for his growth and quality of life.  The tube also serves to keep him hydrated following a reaction, and keep his blood sugar stable during a reaction, as well as medication as needed from the pain of a reaction.  It keeps food positive, as he is able to eat his safe foods as he desires, while he works on his aversions.  It has helped his quality of life so that “nothing can hold us back”.    This week, I plan to provide a few additional glimpes into what Tube Feeding looks like for Little Man, so come on back! 

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!

For when I am weak, I am strong....

"But He gives a greater grace. Therefore itsays, "God is opposed to the proud, but gives grace to the humble." James 4:6. 

I'm not a big 'scripture person", meaning I don't necessarily memorize or quote scripture but of course am familiar with passages and gospel stories and am reminded of them in so many area's of life, in the everyday.  God uses whatever means He needs to to speak to us- sometimes in the voice of our children, in the eyes of a small child, in the cry of a wounded soul, in the wake of tragedy are the times we are listening most for His voice-but He is always there.  I learned this as a small child, something my dear grandmother taught through her example. And it was impressionable on me. It was a gift-directly given from her but indirectly given from God....He knew I would need this gift.   

I came across this post today, "When you give up, and you break, you've made it.",from A Holy Experience on the heels of my last post trying to express what it feels like to be filled with graces, the graces to sustain, the graces to see the works before me, the graces to appreciate the painful days and even more so the graces to be so grateful and humble for the so.very.many.blessings.  

These words from the (above) post...."But here comes the upside, the so unbelievably bright side: when you are just done, and broken, and tired, you’ve made it.

You are now about to experience the most profound, amazing, life-altering, freedom and grace that will set you so free you are going to fly.

I mean it.

I mean it.

When you are broken enough and tired enough and angry enough that you just can’t mold yourself, fix yourself, do better, be better, when you are just done, grace is lavished on you like nothing you’ve ever experienced."

Wow. Wow. Read more, trust me.  Let the words wash over you.   

The title of the post isn't what grabbed my attention though.  I don't feel like I've given up- or that I am ready to.....but that doesn't mean I don't think about it when I am weak, or broken, or learning. 

What grabbed my attention in this post,was the first words...‘"I don’t want to be a servant –I want to be a Caroline.” So says the three year old wonder-child who humbles me as a parent and makes me think deeper about life."

My 3yr.old humbles me as a parent, too.  Last week, I was working on an article, and decided to also do a slideshow to illustrate along with the article (I love pictures!) for Feeding Tube Awareness Week 2013.  Little Man was watching the video with me, as I edited it.  We came to this picture:

And, he said- "mom, what's this" (pointing to the heart).  I said, "it's a heart".  He said, "no, this" (pointed to the same place). I said, "it's your feeding tube but inside is the heart, do you see it?".   He said, "no, that's not a heart- that is a kiss".  

Almost a year ago, he had that tube placed. Although I would say it was love- a symbol of love, of tough love at that time, but of love; I would not have said it was a kiss.  Today, through a multitude of graces, I know it is.  A kiss from an angel. A bridge to saving his life, to restoring health and quality of life in our little man. A way to get nutrients, medications, hydration in without constant chronic inflammatory reactions.

What strikes me from this post (above) is the first lines and how my own 3yr.old said those very words to me just yesterday. "I am not a supertubie, I am Sam.....I have a tube, see- right here (lifting his shirt and pointing to his gastric tube).  My tube is super. I am Sam".

Feeding Tube Awareness Foundation put a lot of thought into the Tubie logo, and it has amazing symbolism needed to bring compassion, understanding, empathy and most importantly, awareness to medically necessary feeding tubes. The word tubie in the logo was coined (and the logo trademarked by Feeding Tube Awareness Foundation) to bring the "human" to the tube (in the words from  Feeding Tube Awareness Founder for this awareness article on Complex Child EMagazine) "...logo embodies what we are trying to do.  Re-position tube feeding from something that is scary, icky and complicated to something that is friendly, approachable and beneficial--when it is medically necessary...... is why we chose the term "tubie" over something more clinical like "enteral feeding."  Words matter in communications..... The emotional connection is important, too.  It needs to be personalized.  The heart is pure tubie love."  

Beautiful. I thank Feeding Tube Awareness for this logo, this symbol of love.   


But in this instance, in a time when my mind is struggling with this chronic illness and the up and down effects on the quality of life of our family; it was simple words from a 3yr.old that reminded me of the importance of not naming the illness of a person.  The illness is not a person, the person has an illness.  The illness doesn't define the person, the person defines the illness.   Sam is a child with a severe food allergy of the gastrointestinal system, he has FPIES.  He is a child with FPIES.  He is not an FPIES child.  Can you hear the difference?   Medical Sociology 101: Do not define a person by their chronic illness.   Do not let a chronic illness define a person.   The medical field relies on the definitions and naming of an illness is to allow understanding of common symptoms, and to help define the illness by grouping symptoms.   However, in so doing, we risk taking out the individualism.  That very individualism that is needed in a complex subset of symptoms that ties together a syndrome called FPIES.