FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.
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."
When I first started blogging, among the reasons to do so was to share Little Man's story with others - to keep friends and family updated but also to help other families know some of the experiences we have had. This blog, although I have written nearly 400 posts in 3.5years, is a mere fraction of what Little Man's FPIES is and looks like from day to day; and that is only a mere fraction of who HE is. FPIES is a diagnosis, not a definition.
I wish I could share more, I wish I had more time to share more because I have always taken my time with my posts -- being very careful about what I put "out there". There is so much to Little Man's story that would be scary to read if you didn't know his whole story, so my blogging has lagged behind. Some would say (have said) that my posts here, sharing Little Man's experiences, are 'scary' in and of themselves, just for being what they are. I wonder if those people think of what they are saying? That a little boys life is scary? A sweet little boy only wanting what any other 2, 3, 4 year old boy would want from life -- to be happy, safe and loved. I never intended telling his story would be 'scary' because his life isn't scary. FPIES itself can be scary, not knowing how to help your child through the pain, symptoms and vomiting of the FPIES being "triggered", not knowing how to properly read a food label, or how to completely exposures of the 'trigger' food, not having adequate medical help when your child is sick,....these can be what is scary about FPIES. But, they don't have to be. One can learn how to read a food label, how to avoid a food trigger, how to avoid cross contamination triggered symptoms and reactions, how to advocate for your child with their medical team -- your partners in the care of your child. Our son's experiences and life are not scary, FPIES can be scary but it doesn't need to be. Empower yourself, help empower others, share what you learn, advocate -- help your family, friends and doctors learn about what FPIES looks like in your child and how to help keep them healthy and thriving in their individual environment. Get help and support and know you are not alone.
I am not alone in our blogging, there are now several dozen blogs dedicated to FPIES from other families on this journey, sharing what they are learning, what FPIES looks like in their child, how it affects them and their family. A friend I have 'met' on this journey, who recently started to journal her families journey with Food Protein-Induced Enterocolitis Syndrome on a blog, "Hope for Wyatt", asked me if I could share Little Man's story for a "Faces of FPIES Spotlight" she is doing on her blog. Hop on over and read what we shared on "Meet Samuel", and "meet" Wyatt and his family while you're there.
The FPIES Foundation announces the first of it's kind FPIES Patient Registry! This is an exciting step for the families of children living with (and outgrown of) Food Protein Induced Enterocolitis Syndrome!! A patient registry that provides a voice to patients in a rare diagnosis is so important, a diagnosis that still has research windows open with treatment and management protocols still being developed. The exact mechanisms of FPIES is yet to be fully understood....and in the meantime, the number of those diagnosed is multiplying rapidly. This is a critical time for the voice of the patients to be connected -- for doctors providing care today, for studies of FPIES, for additional, new and varied research for tomorrow, for families to be connected, for FPIES to be 'on the map' in this new way.
Please add your voice, your child's voice to this registry.
I am honored to have been able to provide an interview for this national magazine, bringing further recognition and awareness to this allergy and the vital role a nutrition professional plays on the medical team of a child living with FPIES.
“I always thought someone should do something about that,
then I realized I was someone.” ~ Lily Tomlin
FPIES and Advocacy are words that seem to go hand in hand. Many times, for me, the word "over-advocate" has come to mind; but that is another story for another day. Today, the story is on Advocacy in complex diagnosis. Complex Child E-Magazine put a call out for parents who have advocacy stories to share them for their September edition, highlighting Advocacy. As I mentioned above- I have a few on how I've had to advocate, and too many times, over-advocate for Little Man's needs (medical, physical, psychological, etc). All of these the inspiration to the one that I felt compelled to tell...the story of the beginning of The FPIES Foundation. I wanted to help others feel empowered with the education and support they needed and to advocate where needed- for their children, for the diagnosis, for children that may follow in the spectrum of this diagnosis. No one should travel this journey alone. A Foundation was needed, a Foundation I, along with 8 other moms and a community of families, created. We created it to help families advocate for their little ones and their families within the challenging situations that a rare and little understood diagnosis of FPIES was, and remains yet. A Foundation whose mission is woven into every ounce of our work, dedicated to offering tools for education, support and advocacy to empower families and the medical community.
You are invited to read more about the beginning of The Foundation for FPIES in the September edition of Complex Child: FPIES, The Formation of a Foundation.
Little man has multiple FPIES triggers (the food protein that triggers a reaction/symptoms); however corn is his worst and it is the most difficult to avoid. Corn is in so many things.
I often get questions on where to start, or what to avoid. So, I wanted to have a specific reference list for places that are my 'go-to' for corn sourcing, I added a Corn Allergy page (see tab above or link here): http://fpiesmudpies.blogspot.com/p/corn-allergy.html
I shared a post the other day on Food Allergy Awareness Week, and what it means to me to bring awareness to FPIES. Today, in the midst of Food Allergy Awareness Week, I am
very touched by these beautifully written words, expressing so much of the
frustration, anguish and most importantly, forgiveness we must give
ourselves, as mothers, that we are doing the best we can everyday. This
is shared by a fellow FPIES mom, whom I have had the honor to 'met' via a Parent-to-Parent support group. Jenn Booth has given me permission to share her letter to Sarah, here, on
my blog.
Sarah, I just didn't know about FPIES.
If I had known that you could look adorable on the outside, but be very sick on
the inside, I would have known how much you needed me to help you.
If I had known that your newborn tears were from pain, I would have complained
less about being up all night.
If I had known that feeding you baby food would put your life at risk, I
wouldn't have spent all day trying to get you to eat it.
If I had known that you were desperately trying to tell me it hurt your body to
eat noodles, I wouldn't have made you finish them before I got you out of your
highchair.
If I had known that you had no other way to tell me that you were suffering, I
wouldn't have punished you for hitting me.
If I would have known that you didn't just "get the flu" more than
other kids, I would have questioned the doctors more.
If I would have known that your tantrums were a cry for help, I wouldn't have
let people label you with a "behavior problem".
If I would have known how close we were to losing you, I wouldn't have wasted
time brushing my teeth before taking you to the hospital.
If I would have known that the cookie I gave you at lunchtime could make you
throw up 4 hours later, I wouldn't have gave it to you.
If I would have known that food allergies don't always show up on allergy test,
I would have tried an elimination diet earlier.
If I would have known that anaphylaxis is not the only kind of life threatening
allergy out there, I would have demanded faster treatment at the E.R.
If I would have known that your vomiting, bloody diarrhea, screaming,
constipation, hair loss, pale color and passing out was from food, I would have
eased your pain sooner.
If I would have known the juice I was mixing your medication into was the
reason you were constipated, bleeding rectally, malnourished, vomiting, and
bloated in first place, I would wouldn't have force fed it to you.
If I would have known that pediatricians, children's hospitals, specialist, and
feeding clinics could all be wrong, I would have sought help elsewhere.
If I would have known that there were other kids like you out there, I would
have tracked down their families and compared stories sooner.
If I would have known that the scopes weren't going to show much because the
prep for the scope is to stop all FOOD days before the test, I wouldn't have
put you through it.
If I would have known that not all kids with FPIES outgrow it, I would have
prepared better for the long haul.
If I would have known that some kids have NO safe foods, I would have been less
freaked out about only having 27 safe foods.
If I would have known that not all ingredients are listed on labels, since you
can never be sure how each ingredient is derived, I would have called food
companies earlier.
If I would have known, if the doctors would have known, if anyone I rambled on
to would have known, it wouldn't have taken 6 years to diagnose you.
If I would have known that at 7 years old you would be in so much pain and feel
so "not normal" that I would overhear you pray to go to heaven early,
I would have explained sooner that there is no such thing as normal and
reassured you that it will get better someday.
If I would have known how embarrassed you are about a medical need to wear
pull-ups at 8 years old, I wouldn't have waited to tell you that I was a bed
wetter until 5th grade.
If I would have known how isolating, scary, confusing, frustrating, and
financially debilitating it is for families living with fpies, I would have
reached out to give and receive help sooner.
If I would have known how many well-meaning people would offer you treats, I
would have stopped them before you realized you were missing out.
If I would have known how many good people we have in our community, I would
have asked for help sooner.
If I would have known there was a place we could get information, support and
understanding, I would have contacted thefpiesfoundation.org sooner.
If I would have known you were suffering from food multiple food allergies, I
would have found you help sooner, saw you smile more, and kept you safer.
Because I love you, because you are my child, because we are in this together,
we will be okay.
Love,
mommy
Please spread the word. It is Food Allergy Awareness Week and these kids and
their families don't need to suffer. This is a rare type of reaction to food,
and most of the medical community are not aware of it, or don't clearly
understand all the symptoms.
If you ever asked how you could help or if you know and love Sarah, please
repost this, like this or whatever....after all, I did just tell you that I
peed my bed until fifth grade. :)
If you follow this blog, you are likely aware that I am BIG on raising FPIES Awareness. Maybe it's my personality, but I have always viewed awareness as an action. I am not simply raising awareness to the diagnosis but in what it means, and what ways we can be stretched to learn, and to be helpful. To be empowered, and to empower others.
In the beginning of this journey, I was privileged to have a pediatrician for our boys that was good about knowing what ways she could empower me. One of those ways was (and some may not understand this but thankfully she understood enough about me to know I needed it)....was to say she was stumped. After week upon week of bringing Little Man in to her office, repeated visits for new symptoms or to review current symptoms, practically begging and often crying for help, thinking that if I just told her about this new symptom or did I forget to mention that incident; will I get closer to some answer she in her knowledge and experience, is considering? Then, one day, she sat down and said, "I just don't know". Words probably easier for me to hear than for her to say (yes, words easier for me to hear). I remember that day still so well because it changed my thinking, it changed me from waiting for someone to have an answer, to me finding an answer. It empowered me. She didn't know, but I did. I didn't know about FPIES then; but I knew my son, and I knew something wasn't right. I would research day and night,and write down everything,and read every journal article I could get a hold of (which was only less than a dozen at that time).
Once we did finally find the diagnosis, I entered support groups, and I found myself surrounded by families in so many similar situations. The need to be empowered to know how to care for this child with this rare, little understood allergy is so great, it is so needed. A mother has the intuition to care for her child from before they are even born....a connection so deep- poetic words (that I do not have) can only begin to describe. What we don't know instinctively we instinctively know where/how to learn. But then, your child has this allergy that doesn't follow any rules and that robs you of the basic need to nourish them and you feel like you're standing alone and your toolbox is empty, or the tools you have in it don't fit at all and you lose time trying to use them, trying to make them fit.
So, during Food Allergy Awareness week, above other times in the year, my awareness is increased and I hope yours is too, and you will help spread the information about Food Protein Induced Enterocolitis Syndrome so that more families and more medical providers, are empowered to learn more, and become equipped with some basic tools for thriving through this disordered allergy of the gastrointestinal system.
Little Man loves crunchy things, always has. Part of his oral aversions and sensory issues? Maybe, maybe just part of his personality. He enjoys a nice crunchy fry, and for some reason- he prefers them in 'coins' rather than strips. I was making them batch by batch for him, until I saw what this mom was doing with her real food french fries. Great idea and since adapting it,it is one of our most "convenient" food items! Little man loves his with lots of sea salt too!
"Once cooked, twice fried, potatoes coins", frozen and ready for their 2nd fry
The recipe is linked above, but in case you missed it, here it is again: French Fries
April is "Caregiver Mental Health Month" at Complex Child E-Magazine. A fellow FPIES mom (Cradlerocking Mama) wrote a great article about her Tips to Thrive for Parents of children with special needs. I also recently wrote an article for their tube feeding awareness segments in February (Overcoming The Small Percentiles: Our Super Tubie). It is a great e-magazine where parents submit real-life experience and insight articles to share among other families that have children with complex diagnosis. FPIES is complex just from the shear nature of it, no test can define it, no test to find out what foods your child is allergic to, and then there are differences in how acute and chronic FPIES presents.
Insights and experiences on different and new ways to cope with this rare, and often times complex, allergy are shared graciously among the other parents going through this with us. There seems there is always something new to learn, even if you are expected to be a 'seasoned veteran". I remember the seasoned veterans on the babycenter boards when I was first logging in, how much more sure of themselves they seemed. They had learned to trust their instincts, go with their gut, follow their child's lead, learned life outside of the restrictions that FPIES can initially put on your family/lifestyle. Now, armed with the skills and tools needed, they were on to thriving with the new knowledge gained and new perspectives, but graciously continued to come back to the groups to share their insights and experiences, and even their continued frustration of some new challenge that was needing to be overcome. I remember well something a fellow mom had said one day that stuck so well to where I was at the time....give yourself time to process. Allow time to process through the new stages, the new information, the changes that may need to be made in your home or lifestyle. Not in a negative way, but in the 'give yourself time to process' and find your way to thrive scope. Give yourself time. That is what I would add to CradleRocking mama's list. When faced with a new diagnosis of any kind, or any stage in the journey, it is ok to give yourself time to process; allow yourself that.
I was thrilled to find this Homemade Chocolate recipe. Before this, I had not tried cocoa butter; but it seems to be going ok for Little Man- although it does make the chocolate candy much more rich than the maple syrup chocolate candy I have made in the past.
Prepare a double boiler, using a small sauce pan to melt the cocoa butter. The cocoa butter should be warmed over a double boiler just to melt it, do not boil (it will get bitter!). Once the cocoa butter is melted, remove from heat and add the maple syrup, then whisk in the cocoa powder. Pour into molds. Makes ~12 medium sized candies (with enough left in the pan to "lick the beaters"!. Put the molds in the refrigerator until solid. Remove from mold, let sit on counter to 'dry' - this helps them not melt as fast when handled by little fingers to eat. May be stored in fridge - if there is leftovers! It is a rich, dark chocolate candy.
Once cocoa was passed, we experimented with ways to make homemade treats (chocolate maple candies, homemade chocolates, and hot cocoa).
I discovered the recipe on a home made chocolate 'flop' - everything happens for a reason and we keep tweaking the measurements to have a chocolate "syrup" on hand. I can then mix the syrup with water (or a safe milk, little man prefers water for his hot hot cocoa), and make hot cocoa.
Little Man coined it "hot hot cocoa" and loves that he gets to have a cup of cocoa when he comes in from the wintery cold, like his brothers!
Ingredients:
2 Tablespoons Pure Cocoa Powder
3-4 Tablespoons Pure Maple Syrup
Pour maple syrup in small saucepan over medium heat, mix in cocoa powder with a whisk. Heat until all cocoa is dissolved and just before maple syrup boils (boiling maple syrup will begin to change it's makeup- and you're on your way to making candy, but that is another recipe!). Remove from heat, and pour into container to store in refridgerator. Mix 1-2tsp (or to taste) of chocolate syrup with 2-4oz. of warmed (safe) water. Serve warm in favorite mug! Enjoy!
Do you remember being new to FPIES? I do. Our son wasn't diagnosed until he was just shy of his 1st birthday, and those months prior were some of the longest, most stressful and anxiety filled months we have endured. Little Man is now 3.5yrs.old, FPIES is no longer a new diagnosis. We are versed in the changes that we needed to make to keep him safe, to learn about his allergies, to trial foods, and get support, to help friends and family understand and support us by respecting our sons needs. FPIES is still a big part of our Little Man's daily life as although his list of safe foods is growing, his list of avoiding foods is still long enough.
Recently, Little Man and our family got to meet another FPIES family who were in town receiving some further consults on their son's complex FPIES. Their son has no known foods he can tolerate at this point. He survives, and thrives on an elemental formula for his sole nutrition. He is 3.5yrs. old, just a few months younger than Little Man. They were instant friends. They both noticed right away that they shared 'bobbles' (they both said bottle in the same cute way!). And although it wasn't a big part of our meeting, they did both recognize that they shared "food makes my tummy hurt"'; which may not seem like a 'happy' thing to share- it is their reality, so having others to share that with is important for them.
Little man has met other little friends with FPIES, but Little Michael had not. Little Michael had only recently even received the FPIES diagnosis (just before he turned 3yrs). His family had been managing his allergies under "multiple food protein intolerances" and since he was thriving on elemental formula since 4mo.old, and no one knew why food caused the symptoms they did- they were alone. They were alone in trialing foods, alone in keeping him safe, alone in trying to have others understand, and explain to their growing son why he couldn't have food, they tried foods here and there- hoping and praying each time that they could find something that didn't cause excessive and irrational screaming, violent vomiting and days of diarrhea....not to mention how some foods also caused edema-like swelling and hospital stays.
So, what would you say to you if you could go back to those first months of the diagnosis? What things helped you understand the most about FPIES? What helped you cope? What helped you with food trials? What helped you help family and friends understand the magnitude of this allergy? What things helped you feel less alone?
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!
"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.
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