Sleeping with the Enemy

Good Night. Sleep Tight. Going to fight another EoE fight tonight.

As Halloween approaches, our children are exposed to all sorts of Halloween frights. Spooky decorations. Spooky cartoons and movies. Spooky costumes. Spooky stories. And all this spookiness may or may not result in a nightmare or two. Fears of monsters and ghosts and goblins haunting the dreams of a child.

It’s made me wonder how we sleep at night. For some parents, they are virtually unaffected. They tuck their children into bed with wishes of sweet dreams. Some parents eventually go on to bed themselves to get a good night’s rest, enviously uninterrupted.

For others, they don’t have it so lucky. Their children may suffer from night terrors and nightmares. Their children may just be poor sleepers. And other parents, like us, have children that are chronically sick and sleep becomes routinely interrupted, especially in times of EoE flares… the enemy.

This has become a way of life for me and my husband. Staying up late to give bolus feeds, then waking up a few times each night to change pull-ups and pajamas that are urine-soaked. Our son consumes 40-45 ounces of Elecare Jr. daily via bolus feeds through his g-tube. Sixteen of those ounces come late at night and Brady oftentimes sleeps so hard, he doesn’t wake up to go to the bathroom. Thus, resulting in multiple pull-up changes.

SWEET DREAMS

"Hey Mommy? Will you sleep in the guest room?" Brady asks hopefully… Every. Single. Night. It wasn’t until recently that I finally put two and two together and figured it out.

This habit started several months ago. It was a time when Brady’s EoE was flaring and he had a couple of rough nights in a short time span resulting in multiple trips to the bathroom to vomit in the middle of the night. These nights are nothing short of exhausting.

It’s the small sound that I only slightly hear in my deep-sleep induced state that quickly escalates to, "MOMMY! MOMMY! DADDY!" It’s at that point that I shoot straight out of bed in a dead sprint down the hall, heart pounding, fighting the sick sense of dread of what is about to happen, all while just trying to reach my son’s room in time.

What follows is nothing short of heartbreaking and frustrating and draining. My husband and I quickly carry Brady to the bathroom where he will eventually projectile vomit, almost always missing the toilet bowl, resulting in the most foul-smelling vomit that lands all over the bathroom floor, toilet, bath mat and wall. Its days before the smell is really truly gone.

The vomiting can go on for several minutes. We wait, just to make sure Brady is all done. We rub his back, put a cool washcloth to his forehead, and quietly talk him through yet another EoE flare. Sometimes I’m successful, but most of the time I’m not at holding back the tears. It’s especially heart-wrenching when Brady looks up at me with tears in his own eyes and cries, "Mommy, why do I always have to throw up? I HATE throwing up." He repeats over and over again.

Oh son, how I wish I had good answers to your questions because I grapple with the same questions myself. I try to soothe him as best I can and tell him he will start feeling better soon. After we get Brady calmed down, we change him into a fresh pair of jammies not soaked in vomit and tuck him back into bed. Lastly, I tell Brady, "Sweet dreams, jelly bean." Then I wait for it… and the inevitable question arises, "Hey Mommy? Will you sleep in the guest room?"

I answer, "Of course I will, sweetheart." Most of the time I make it back to my own bed and Brady is none the wiser. Maybe this is wrong, but a girl needs her sleep and I’ll admit I thoroughly enjoy our king-sized insanely comfortable mattress. Sometimes his flare is so bad, I don’t feel comfortable going the rest of the way down the hall and I find myself settling into the guest room, just as requested.

So oftentimes, we as parents, try to protect our children. Some parents fight the monsters that come out at night. Some parents soothe a child after a night terror or nightmare. Some parents check under the bed, in the closet, in the drawer looking to chase away the fears of their child.

Monsters don’t come out to scare Brady. Brady rarely has nightmares. Brady has no fears of what’s under his bed, in his closet, or in his drawer. No, my son fights the terror of something else altogether… fears of the nighttime vomits. Fears of the EoE flares. Fears of waking up in the middle of the night with excruciating stomach pain and the knowledge that this pain will result in yet another violent vomiting episode. He sleeps with his EoE enemy.

Brady thinks that by having me or my husband sleep in the guest room (located right next to his room) that somehow, someway that will make it all better. Oh, how I wish it were that simple. What I wouldn’t give to have the power to chase away the EoE flare monster. To utterly destroy that SOB.

All I can do, all I have the power to do, is pray. I pray that Brady can get through the rest of the night without another vomiting episode. I pray that he can fall asleep to sweet dreams at last. I pray that he can wake up, ready to face a new day with a smile. I pray for a cure. I pray for rest. I pray.

　

“Ba – da – ba – da – da, I’m lovin’ it”

NEVER IN A MILLION

If someone would have told me six years ago when I was pregnant with my first child that I would spend countless hours by his side as he learned to accept and eat food, I never would have believed it in a million years.  If someone would have told me in spring 2010 that I would spend the next four years taking my son to hours and hours of feeding therapy, I absolutely would have believed it.  Within Brady’s very first year of feeding therapy, I quickly realized the often agonizingly slow process that is feeding therapy.  

In a word, it’s frustrating.  Progress is baby step by baby step with several steps backwards before real movement forward.  There are setbacks.  There are successes.  There are more setbacks.  And the pattern goes on and on.

We’ve been at this feeding therapy game for well over 4 years with very little progress, until recently. We’ve tried feeding therapists with all sorts of different backgrounds and education from feeding teams, to occupational therapy, to behavioral psychology, to speech therapy.  Each therapist approached Brady a little bit differently.  And each therapist didn’t get very far in a several month time span.  One therapist admitted that after seeing Brady for four months, she was officially “stuck”.  Yep, welcome to our world.

A few lessons we have learned along the way.  One, don’t expect miracles overnight.  Two, there absolutely has to be a connection between the therapist and child.  Three, if I (as the parent) dread going to therapy and oftentimes leave feeling defeated and helpless, it’s time to move on.  Because afterall, if I’m miserable, how miserable must Brady be feeling?  Four, you have to give each therapist a solid chance.  Never go just once (unless the connection is really that bad) or twice and stop going.  The thing with feeding therapy is persistence.  It’s not for the weak.  It’s about powering through all the frustrations, setbacks, and limitations to get to the ever so elusive end-goal… eating food.

I was elated when Brady said he wanted to try pizza. 
I made him a safe pizza that he could eat.
It started out okay,
but quickly went downhill from there.
This is a pretty typical day.

THERAPY FOR THERAPY

Sometimes I leave Brady’s feeding therapy sessions with an intense need for therapy myself.  Not for feeding, but to unload and emote after yet another horrifying feeding therapy session.  The emotions and frustrations that occur in a 45 minute window can be intense as I watch my son struggle and fight against taking the teeniest, tiniest bite of food that is out of his “comfort zone”.  And by definition, just about everything is out of his comfort zone with the exception of Goldfish, toast, and French fries.  

Therapy was especially difficult when I was taking Brady to his weekly feeding sessions with a behavioral therapist during the fall 2013.  Just painful.  Not only was there no connection between this particular therapist and Brady, but I had come to dread driving him to his appointment.  It was the worst therapy has ever felt.  The approach was so negative that I would oftentimes witness Brady lashing out and transforming from a 5 year-old little boy to his former two-year-old self.  All of a sudden the tantrums were back in full force, food was being thrown on the floor, he began spitting again and overall acting like a terror for each 45-minute session.  

We did this routine for four months before I said enough was enough.  We weren’t getting anywhere and I didn’t like the negative place this therapy came from.  Everything was in a form of punishment.  There was no getting down on Brady’s level.  There was no real motivation for him to succeed.  

It was about this time I came in contact with another mom in the area whose son was also receiving feeding therapy.  She gushed about their new therapist.  She was absolutely elated at the quick results they had seen in such a short amount of time.  I was intrigued and placed a call to see if there was an opening and to see if this feeding therapist was for real.  

         

Brady with his new 
feeding therapist, Miss Stacy,
during Feeding Tube  Awareness Week.
Stacy even bought a t-shirt in
support of her tubie buddies!

Brady and Miss Stacy checking out his
ice cream tongue in the mirror.

A NEW YEAR, A NEW WORLD

Thankfully, she had one opening left and Brady started feeding therapy with Miss Stacy in January 2014. This therapist has been life-changing.  I sometimes refer to her as being “magical”.  I know deep-down there is no magic involved, but what she has gotten my son to do over the past few months have been absolutely astounding.  I remember Brady asking me a few days after his first session with Miss Stacy when it would be Tuesday again.  I asked him why he wanted to know, and he excitedly replied, “Because that’s when I’ll see Miss Stacy again!”  Wow.  He has never, ever been enthusiastic about attending therapy, much less counted down the days until the next session.  We were off to an amazing start with his new therapist and I had hope again… something I had painfully lost in the fall with the previous therapist.

BRADY'S FIRST TIME TRYING SEVERAL NEW FOODS AT ONCE,

INCLUDING SLIM JIM

TEENY, TINY BABY STEPS

Brady started to make progress with Miss Stacy almost immediately.  She challenged him.  I’m not sure if his positive response to her was from their immediate bond, or Brady maturing and having the ability to be reasoned with, or a little bit of both.  My hunch is the latter.  Brady went from not being willing to even entertain the idea of putting anything in his mouth but a piece of toast, Goldfish or French fry to taking the teeniest, tiniest bites of banana and gummy worms.  Huge success!  We progressed to popsicles within a few weeks and rice chips and wheat thins soon followed.  From there, Brady has progressed to taking tiny bites of Slim Jim.  Slim Jim!  Completely out of his comfort zone.  

Another big day was the introduction of slushies.  For over two years, and ironically, ever since he had the PEG feeding tube inserted, Brady gave up apple juice (the only juice he was willing to drink) and went to drinking ice water only.  The introduction of slushies was quite the big deal.  Granted he only takes a few small sips, but that’s progress folks.  We’ll continue to introduce new flavors of slushies and juices, one small sip at a time for several months to come.

BRADY'S FIRST TIME TRYING AN ICEE SLUSHY

MICKEY D’s, PLEASE

A few months ago, nothing short of a miracle occurred.  It was late in the evening, very close to bed time in fact, when Brady looked over at me and said, “Mommy.  I want to go to McDonald’s to try their chicken nuggets.”  Say what?  Brady never asks to go to restaurants and even though it was bedtime and we had already had dinner, I didn’t think twice about packing up the family for this momentous event two miles down the road.  Although I will admit I had a nagging thought in the back of my mind that Brady was trying to stall going to bed.  He’s smart that way.

Then, another wonder happened.  Instead of going through the drive-thru as we normally do because Brady hates sitting in restaurants most of the time, Brady actually asked if we could go inside to eat.  Once we were inside, Brady and his sister made a beeline for the Happy Meal toy display.  Well crap.  Two thoughts went through my head.  One, he’s stalling going to bed.  Two, now he’s only saying he wants to eat chicken nuggets to get the Spiderman toy on display.  Still, I kept the dream alive and ordered the four-piece McNugget Happy Meal.  

Once we sat down, Brady tore into his chicken nugget like no one’s business.  My husband went to grab some ice water for him and by the time he returned with the drink, Brady had already eaten over half the chicken nugget!  It was as if Brady had been eating chicken nuggets his whole life.  This was Brady’s first meat in over four years.  Brady ended up eating two whole chicken nuggets that evening and I remember sitting in the middle of that McDonald’s with tears in my eyes in utter amazement.  

McDonald’s has never felt so special.  Two chicken nuggets may not seem like much to most people, but to my husband and me, it was a moment.  That night something changed.  Over the past four years, I have seen Brady taking the smallest of baby steps and on this evening, he made one giant leap.  

Brady at McDonalds trying chicken nuggets!

PROGRESS, ONE SMALL BITE AT A TIME

That evening was so surreal, that I wondered if it was just a fluke or if we really had turned the corner.  My hope was back in full force and I didn’t want it to slip away again.  I am happy to report that we continue to make progress with Miss Stacy’s help.  We’ve recently introduced pasta, coconut milk ice cream, coconut milk ice cream bars, coconut milk yogurt, rice milk, and even hamburger.  Brady continues to try new things every week in therapy and that is huge progress.  Before, he would barely entertain the idea of bringing most foods up to his lips or even nose to smell.  Now, Brady is taking small bites… but they are bites nonetheless and we will take it.  

The foods that we have introduced by no means are enough to sustain his daily nutritional needs.  For so long, Brady has ingested so very little at meal times that he gets full quickly and can’t each much at one time. However, we want to get to a place where meals become actual meals and enough to sustain him.  In the meantime, we offer his newly introduced foods at meal times, then give a bolus to help supplement the rest of his caloric needs.

BRADY TRYING MELTED POPCICLE FOR THE FIRST TIME

(this was a long way from only drinking ice water)

BRADY'S FIRST TIME TRYING HAMBURGER  

MAKING FOOD FUN!

THE ROAD TO TUBIE GRADUATION

It’s a slow process.  It also means his feeding tube is here to stay for years to come.  Brady surpassed his two year feeding tube anniversary in May 2014.  I’m thankful we have the feeding tube to help ensure Brady is getting everything he needs to continue to grow and thrive.  But I so look forward to the day when he becomes a “Tubie Graduate”.  That will be a huge celebration.  But first, there is lots of work ahead of us. The road to tubie graduation will certainly have its bends and turns and detours and dead ends.  The road won’t be easily traveled on most days. But we’re all-in on this road trip, no matter where it takes us.  

In the meantime, we will take the time to celebrate each newly introduced food.  We’ll celebrate each successful feeding therapy session.  We’ll celebrate the fact that Brady is becoming more open to trying new things.  

And most of all, we’ll celebrate taking leaps of faith along the way.  

Deep Down Real

 MY INNER MUSICAL SOUNDTRACK

For as long as I can remember, I have been rolling through life with some sort of theme-song playing in the background.  I love music of all kinds.  My theme-songs have changed over the years varying from the almighty Gloria Gaynor anthem, “I Will Survive” and Neil Finn’s “She Will Have Her Way” from my early college years to post college years, including “Dreams” by the Cranberries and “Just a Ride” by Jem.  Then I had my Carrie Underwood phase where just about every Carrie Underwood song was my theme song, including “Wasted”, “Jesus, Take the Wheel”, and “Lessons Learned”. 

My current “jam”, as my son would say, is “Brave” by one of my favorite musical artists, Sara Bareilles.  This post is all about being brave.  Over the course of writing this blog, it has felt a bit like peeling back an onion.  I have peeled back many layers over the past year or so and I’m about to peel back yet another, rather intense layer. 

YouTube video, “Brave”

https://www.youtube.com/watch?v=QUQsqBqxoR4

THE BRAVE FACE

The thing about being a mom of a special needs child is this constant, nagging urge to put on the brave face… for everyone.  Our children, our spouses, our families, our friends, and the list goes on and on.  This face is not untrue.  It’s not false.  Because really, when it comes right down to it, every mom of a special needs child is uniquely brave, whether they want to admit it or recognize it or not.  It’s simply there and it’s inescapable.

Oftentimes after updating my blog, I will get messages from family or friends that say, “You’re such a good mom” or “You’re so strong” or “I don’t know how you do it.”  I relish in these comments, because I admit, I have a nasty case of self-doubt and there are times when I desperately need that pat on the back or words of encouragement.  So thank you, to all those out there who do take the time to read this little blog and reach out.  It means more than you’ll ever know.

READING BETWEEN THE LINES                    

I write this blog for several reasons.  To inform.  To educate.  To inspire.  To help. To express.  To encourage.  To feel. To be real.  To be.

And in between all of this, I want to be authentic.  Through all of the pats on the back previously mentioned, I began to think over the past few months if I have really gotten down to the deep, down truth of it all in this blog.   To lay it all out there and just be honest.  Most of what I’m about to share is at times embarrassing and self-deprecating.  It’s not easy admitting our weaknesses because it’s human nature that encourages us to always put our best foot forward and our brave faces on.

I doubt a lot.  I doubt my abilities as a mom.  I doubt the decisions and choices I have made for my son.  I doubt the abilities of the health professionals surrounding my son’s care.  And until recently, I doubted the effects of feeding therapy.

MAMA GUILT

I have two children.  Brady is my 6-year-old with EoE and Sydney is my 4-year-old and EoE-free.  When Sydney was born in March 2010, Brady was not yet diagnosed with anything.  Yes, he was in feeding therapy and speech therapy and vomiting all the time, but that was the extent of it.  Six months after Sydney was born, we took Brady to a GI specialist for the first time.  Within just a few weeks Brady was officially diagnosed with EoE and our whole world changed.  Between the therapies, the multiple trips to Cincinnati Children’s Hospital Medical Center, and trying to get Brady to eat everyday was exhausting.  We tried desperately to get Brady to eat three meals a day, plus snacks and the dreaded Kids Essentials 1.5 Cal Boost formula.  At the time, Brady was supposed to be drinking 36 ounces of formula/day.  We were lucky if we got 12 ounces down him.  And what little bit we did get him to eat or drink oftentimes resulted in yet another unexplained vomiting episode. 

It was such a frustrating and all-consuming time period for our family.  I had the mama guilt everyday that my 6 month-old little girl was getting lost in the midst of all the crazy.  It wasn’t fair for her to have to take a backseat, but Brady was on the verge of a major medical crisis with various health problems, loss of weight and developmental delays on top of it all.  And to make matters worse, I was suffering from post-partum depression after having Sydney and I just couldn’t shake it, no matter how hard I tried.  There.  I said it.  It’s not easy to admit to… again that brave face always wanting to make an appearance.  The deep down truth of the matter, I was struggling.  Struggling so much that my unobtrusive husband printed a list of physicians near our home and handed it to me 5 months after Sydney was born, kindly nudging me towards the road to help.

DR. FIX IT

It took me another month to finally admit, yes, I needed help.  I was having such a hard time dealing with it all that I was just going through the motions, but just barely.  I timidly went to my new primary care physician (PCP) and when she came in to meet me for the first time, I remember just bursting into tears in front of this total, complete stranger.  I was mortified.  However, that one act alone made me realize that I had waited too long to admit I needed help.  Without hesitation, my new PCP put me on anti-depressants.  I was ashamed for the longest time that I needed them.  It felt like “anti-depressants” was a dirty word.  I didn’t want to talk about it with anyone.  I only opened up about it to my husband and a few close friends that I was now taking meds for what my PCP called “situational depression”. A few friends judged and I guess that’s why I kept a lot of it to myself.

I begrudgingly took the pills each day and after a month, I definitely started to notice a difference.  It was certainly a lesson learned that it’s okay to admit when I need help and that I don’t have to be everything to everyone all the time.  I felt so lost back then with such a feeling of despair and hopelessness.  Watching Brady suffer day after day with no answers and trying to take care of a six month old baby girl was simply sucking the life out of me.  I don’t mean to sound crass, but that was the deep down truth of it all. 

I’m so glad I sought treatment when I did because a month after visiting my new doctor, Brady was officially diagnosed with EoE.  The next several months were hectic and emotional.  I was much better prepared for the next phase of our lives since visiting my own doctor and I’m so very grateful that my husband recognized a need that I didn’t realize I had.  I have learned over the past few years that self-care is the absolute key to survival.

THE 80/20 RULE

There is a rule of thumb in business that you should focus 80% of your time and energy on the 20% of work you feel is most important.  Seems simple, right?  It’s all about how to work smarter, especially in the days of limited resources.  I recently came to the realization that I have my own 80/20 rule.  I feel that 80% of the time, I’m doing good.  I’m hanging in there.  I’m accepting of the life that has taken a turn over the past few years.  That 80% is the optimism shining through and the hope of good things to come.  That 80% also helps me to see how far we’ve come and to truly appreciate the people and things surrounding our family and home.  It’s just that shifty and aggravating 20% that overflows into my happy place and threatens to take over on occasion.  I can see where that 20% could easily engulf the 80%, chew it up and spit it out.  All of that hard work of the 80% simply crumbling into dissipation at the first sight of resistance. My 20% is the underlying hurt and frustration and anger that resides just under the surface on my not so good days… and let me tell you, that part ain’t so pretty.

SCATTERED OPTIMISM

I’m an optimist at heart.  Always have been.  Many of my posts are full of hope, and a majority of the time I feel that way.  But I have my days -- don’t we all?  I have a harder time especially when Brady has flares, or he has a bad feeding therapy session, or he’s in pain hovering over the toilet fighting back nausea in the middle of the night, or he’s not growing or developing on schedule, and the list goes on and on.  I can so quickly revert back to that feeling of hopelessness.  It’s those days I see “the 20%” coming on and I can’t stop it.  I can’t fight it.  I submerge myself in the deep dark feelings of despair and then the hate begins.  Hate for this horrible, uncured disease.  Hate for the pain and suffering Brady goes through.  Hate for the need for feeding therapy.  Hate for all the stress that can pile on. Hate for the feeding tube (even though it’s done wonders for Brady). 

And unfortunately, the hate for this disease can get misplaced, finding itself landing on an innocent someone or something.  It’s hard to explain.  I just know that I catch myself lashing out and grabbing a hold of something, anything at times of desperation.  That “something, anything” could be a multitude of things or persons that cross my path and make my sometimes already complicated life even harder.

It’s right about at that point when I begin to loathe myself because of all the hatred that has built up for these seemingly meaningless “things” that I cannot change.  And then I snap out of it.  I realize things aren’t all that bad, that others out there have it so much worse, and I move on… until the next time.  The secret to recovery on these downer days is to recognize it, own it, accept it, take a breath… and then begin to walk on, move forward, keeping that head held high, all while resisting the urge to crumple and fall for the ridiculousness of it all. 

MY NEW PLAYBOOK

Through this journey I have learned a lot about myself.  Sometimes I let the little things take over and blow up into something that is so much more than it should be.  Whether it’s a snub by family that hurt my children (and me), hurtful comments made by others, or friendships tried and tested.  There is just no room in my life for this negativity.  Perhaps a few more bridges need to be burned.  Perhaps new bridges need to be built.  I know one thing is for certain, I’m not going to let others’ judgments and decisions affect my life anymore – at least not in a way that it festers.  I’m not going to let someone else make me feel bad about myself and my decisions.  Those things are out my control.  What I do have control over is to move on and simply let it go as quickly as possible.   

Perhaps I need to take a page out of the business 80/20 playbook and start dedicating my 80% towards achieving the life I want for myself and family.  The 20% that really counts.  The 20% that is all about providing a warm, nurturing life for my family, despite all the odds and mishaps.  Creating a life rich of positive experiences, giving back, helping others, setting a good example for my children and simply living this life to the fullest. 

I know it won’t be easy at times to keep the focus in the face of adversary.  But when those times do arise, and they will, I am committing myself to remembering my new playbook.   To let go of things I have no control over.  To get rid of the negativity and focusing on my dedicated 20%. 

I have a feeling that 20% is going to fill my bucket for years to come.  



A Day in the Life of an EoE Family

 THE DAILY GRIND

The day that Brady got his feeding tube, was the day our lives changed drastically.  Our new routine was quite clumsy at first as my husband and I desperately tried to quickly learn all things feeding tubes. As we celebrate Feeding Tube Awareness Week this week and as we approach Brady’s two year anniversary of having a feeding tube, I have been thinking about how our everyday life differs from so many.  This isn't a good or a bad thing.  It just is.

Below is the day in the life of our family.

5:30 AM         

Unhook Brady from the feeding pump, as quietly as possible while praying not to wake him.  Accidently waking him at this time of day means for a very long day indeed. Also, while unhooking him we must keep our hands ever so steady as they fight the grogginess of the early morning.  Unhooking him involves removing the Cori-Safe that surrounds the g-tube extension connection to the feeding pump (picture below).  Then we have to remove the 1-inch silk tape that surrounds the connection.  This may be an unnecessary step, however in the first several months of Brady having a feeding tube, we had several leaks.  The tape just makes my husband and I feel better knowing the extension and feeding pump are well connected.  Next, we have to clamp Brady’s extension to ensure formula/stomach juices don’t leak out everywhere.  Finally, we remove the feeding pump extension from Brady’s mic-key button.

9:15 AM         

Start the morning bolus feed.  This consists of heating water in a mug and dropping his bottle of formula into the mug to take the chill off.  Brady has a sensitive stomach and we have found that warming up refrigerated formula doesn’t upset his stomach as much.

9:20 AM         

Start the gravity bolus feed.  This consists of taking a tray with all needed supplies including: a towel (for possible leakage), bolus extension, bottle of room temperature water (for flushing tube before and after feeding), medications, and 60 ml syringe (to pour formula into).  We had many lessons learned over the first month of gravity bolus feedings.  Mainly, we had to learn a trick of the trade that was provided to us from other parents of kids with feeding tubes (not the GI nurses or home health nurse).  Our trick is to allow 10 mls of formula to drain per minute, then clamp the extension. Then, unclamp the extension for 10 more mls, then re-clamp, etc. Currently, Brady receives 180 mls per bolus feed.  That equals 18-20 minutes to do the entire bolus feed. 



The tray of goodies -- 60ml syringe, formula, water, bolus feed extension and towel

 

Noon              

Start the “lunch” gravity bolus feed.  Give noon medication.

4:15 PM         

Start the “dinner” gravity bolus feed.  Give dinner medication.

6:00 PM         

Mix overnight feed and next day bolus feed formula.  This consists of mixing Elecare Jr. Unflavored Powder Formula with water in a big pitcher.  We shake the formula for over a minute to ensure there are no clumps of powder that could clog the feeding tube.  Then, we measure out the three bolus feeds for the next day and put all of the formula into the refrigerator. 



Elecare Jr. Formula all mixed up and ready to go for the next day

 

7:25 PM         

“Fireman Juice” Time!  This is what we call Brady’s “Budesonide Slurry” mixture.  We mix a nebulizer tube of Budesonide with 5 mls of Nestle Quick Strawberry Powder.  (Many physicians prescribe budesonide mixed with 5 packets of Splenda.  Brady never took to the Splenda, so we had to get creative).



It tooks us months to get Brady to take his "budesonide slurry".  Now he takes it with ease.

 

7:30 PM         

Start the “hooking up” process.  This involves pouring the formula into a 1200ml bag.  We also add 3 ice packs around the bag to keep it cool.  



1200ml bag filled with formula and surrounded by icepacks

 

Next comes my least favorite part -- the priming of the pump.  I’m not sure what it is about this step that gets under my skin, but it does.  Priming is a way to get the formula pumped from the bag and through all the tubing in order to get out all of the air bubbles.  The process just takes a few minutes by pushing in the prime button on the feeding pump until the formula has made it all the way through the tubing.  Somehow, those few minutes seem like so much more than that. 



The formula making its way through the tubing. 



After the priming is done, it’s time to actually hook Brady up.  We take the feeding tube extension and fit it into his mic-key button until the extension is locked in. 

 

Brady with just the feeding pump extension attached. 
The end of the extension is laying on top of the disposable mat we change daily.

We administer meds through the extension at this point, flush the tubing with water, then connect the feeding pump tubing to the feeding pump extension.   

The extension connected to the feeding pump

Adding the half inch silk tape around the extension and feeding pump. 
Probably an unnecessary step - but it makes me and my husband feel better. 



Adding the "Corisafe" around the extension and feeding pump tubing



Last step -- turn the feeding pump on

Lastly, we turn the pump on and pray for the best.  Most nights are calm… meaning there are no episodes of vomiting or feeding pump alarms being set off by Brady accidentally rolling on top of the tubing and blocking the formula from moving through.  When this does happen, the alarm on the feeding pump goes off and stays on until the flow of the formula is corrected and reset manually.

Some nights are not as easy.  Brady’s stomach might get upset, resulting in needing to be “vented” or unhooked from the feeding pump altogether.  When he does need vented, this involves me or my husband unhooking Brady from the feeding pump and taking him to the bathroom where his extension can let out any excess air or formula that’s just not sitting right in his stomach.  Brady’s stomach is extremely sensitive and when his EoE is flaring, it doesn’t take much for Brady’s stomach to get upset. 

There are nights when I hear the whimper…  It’s a special sound that I am totally in tune with and I know in a split second that I need to get to Brady immediately before he gets sick… even in a dead sleep.  My husband and I have become quite good at this and can usually get there in time to get him unhooked and to the bathroom in time. 

When this does happen, this is a huge success for both Brady and me and my husband because Brady doesn’t have to go through the actual process of vomiting.  Although nausea and stomach pain is involved, we can usually vent him with the extension so that the vomit can pass through the g-tube instead.  This saves Brady from the pain and trauma of vomiting and the regression that immediately follows.  Brady usually refuses food a day or so after a vomiting episode. 

It’s a win for me because I hate watching him vomit and the pain that is involved.  Not to mention that it saves us from massive clean up in his bedroom.  Some nights we just can’t get there in time.  We have had lessons learned over the years and we now have a stack of towels near Brady’s bed.  Brady calls them the “throw up towels” because we sometimes can’t get him unhooked in time and he simply vomits inside the towels instead.  Trust me, it saves a lot on the clean up end. 

Then there are the nights when neither of those options quite work.  We either think we can get him to the bathroom in time, and when we don’t, Brady ends up vomiting in his bed, bedroom, hallway to the bathroom, or bathroom floor.  Those are the nights that are a little more painful because Brady does in fact vomit.  We also have massive clean up because the vomit is projectile and goes everywhere.  Lastly, Brady gets so upset when he vomits that he can’t stop crying… and that’s where my heart breaks over and over again.

 Around

1:00 AM          

Pull-up change.  Brady pees.  A lot.  And rightfully so.  He’s getting 70 mls of formula pumped into his stomach every hour from 7:30 PM-5:30 AM.  He sleeps so soundly that he rarely wakes up to go to the bathroom.  If we don’t change his pull-up a few times a night, Brady will pee through

his pull-up and pajama pants.  We have nighttime mats underneath him that help.  This prevents me and my husband from changing sheets multiple times a night.

 

Around

4:00 AM          

Another pull-up change.

5:30 AM          

The start of another day and the life of a child with a feeding tube.

OUR NEW NORM

Our new norm was hard and intimidating at first.  My husband and I survived our crash course in all things feeding tubes and had a routine down in under a week.  I think it’s safe to say that we have adjusted to life as we know it.

It still doesn’t make it easy some days. 

In between the daily routine, my husband and I both work full time jobs and our kids are active.  We are on the go quite a bit, and that’s to be expected of a family of four.  We also squeeze in one feeding therapy session per week with an amazing therapist, as well as do our own feeding therapy at home.  This consists of trying to get Brady to overcome his severe feeding sensory disorder by trying new foods.  We view the little things, like Brady licking a popsicle or taking a tiny bite of banana as a huge success. 

What does get hard though is the underlying chronic stress underneath it all that can become overwhelming at times. 

The lack of sleep is also problematic some days.  Although my husband and I take turns checking on Brady every night, it oftentimes feels like we’re in the perpetual stage of a newborn.  Getting up multiple times a night for months on end can do a number on you. 

As I was going through the nightly routine last night, it hit me.  I tucked my daughter into her bed all safe and sound.  I read her a book, kissed and hugged her and walked to her bedroom door to turn off the light.  Before I left her doorway, I turned around one last time before heading into my son’s room and I just looked at her.  She was all nice and cozy in her bed and I knew that I didn’t need to worry about her that night, or any other night for that matter.  She was safe and content and I didn’t have that nagging worry that something could go wrong as I left her to her dreams.  What a comforting feeling.

I did the same nightly routine for my son, but as I walked out of his room that same ol’ feeling settled in.  That feeling I get every night.  That anything could go wrong and the incessant worry began to wash all over me.  The same worries I have nightly… What if he gets sick?  What if his mic-key button falls out?  What if I can’t get to him in time?  What if we can’t get the g-tube back in if it does fall out?  What if… what if… what if.

That is what becomes so emotionally exhausting through this journey.  The constant worry.  And not just at night.  My worries extend into the day when he is at school, on a playground, playing soccer, etc. worrying that something could happen to his mic-key button.  That is my life of a momma with a child with EoE and a feeding tube.  I like to think I handle it well most days.  Some days, not so much.

PROGRESS

We are grateful for the feeding tube in so many ways because it has allowed my son to grow, thrive, develop, and play.  Life before the feeding tube was very different for my son.  He was failure to thrive, losing weight, weak and just plain sick.  He didn’t have a lot of energy most days and his stamina was low.  Now, Brady is a happy, energetic boy that went from not being on the growth chart for height or weight to achieving the 35 percentile for weight and 11^th percentile for height in just two years time with a feeding tube.

That’s progress and we will relish in it.  That’s what makes the daily grind worth every single minute.







Brady with his Tubie Friend Bear he named "Button". 
They both have the same mic-key button!