It Takes a Village

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Three weeks have passed since my last update and, per the norm, life continues to get away from me.

During that time I had a birthday.  It is such a simple thing, we have one every year, but sometimes I feel like I am wandering through a dream and a life that is not my own.  As I grow another year older, I wonder how I do the things I do.  By no means is this me fishing for a compliment, trust me.  Instead, I am trying to understand how I can be an adult when most days what I want most is for my mom to make everything better.  After all, isn’t that what moms are supposed to do?

But, it isn’t my mom’s job to make everything better for me.  I am the mom now and my priority is and always will be my children.  The problem with being a mom seems to be that we neglect the most important aspect – taking care of ourselves.  If we don’t take care of ourselves, how can we take care of our babies?

It is probably no surprise that I have a habit of putting my own needs on the back burner when it comes to my children.  Rewinding the clock to three weeks ago, I was supposed to be packing for a trip to Philadelphia.  I was supposed to be preparing for doctor’s appointments and decisions for the upcoming year and Brian’s health.  I was supposed to be focused on Brian.

By the grace of God, the trip didn’t work out.  At the time I was frustrated, but in reality, God was doing me a favor.

I’ve always hated the adage, “God only gives you what he knows you can handle.”  When people say that to me, my response is, “Well he must have confused me with someone else.”  There are days I want to yell, “Uncle!” and give up the fight.  God must have sensed that coming, because had I packed for that trip, boarded a plane and flew across the country, I would have been in a far worse predicament.

You see, two days before we were supposed to leave, I ended up in the hospital.  If the trip had not been cancelled, Matt never would have known the pain I was in, and would not have been able to convince me to go to the ER in the first place.  My priority would have been Brian and his medical needs.  God was on my side, because not only did I have to be hospitalized, I also required surgery.  If I had hidden my pain and boarded a plane, I don’t know what we would have done.

So why the title of this blog?

Simple…I have the best village in the world.

Matt made a phone call and in no time at all, my aunt and uncle arrived to put the kids to bed (not the easiest task at times) and sit with them.  They stayed until Matt could make it home, and then my uncle returned the next day so Matt could go to work (here is where I have a hard time focusing on me…I hate to disrupt plans, so I insisted that Matt work).  My mom sat with me during the surgery, took me home, and came back the next day with a care package of food and remedies to help with the pain.  Friends brought food over, drove Addi to and from dance practices, and Annie (the best young woman I know) gave up a day to just hang out with me and yell at me when I tried to do anything more than rest.

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Brian is allergic to pumpkins, so decorating instead of carving is a perfect solution!

Knowing I have a village I can turn to is important, because our “normal” is about to change.

The same day I ended up in the hospital, I met with Brian’s allergist and discussed Brian’s feeding tube.  We went over the plan, feeding schedule, and what new foods we should consider trying.  It was an overwhelming amount of information.  A week after that appointment, Brian’s surgery was scheduled.

Brian will be admitted into the hospital on November 28.  Why are we waiting another month, you may ask.  First off, we want Brian to have every opportunity to be a normal four-year old we can give him.  T-ball finishes on November 18 and putting the surgery off till the end of November means I will be released from my post-surgery recovery and will have the strength (hopefully) to survive Brian being in the hospital.  His surgery is scheduled for the morning of the 29th, and the doctors are hopeful he will be released November 30.

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I have spent the last few weeks pouring over information regarding feeding tubes.  My Amazon cart is full of supplies others recommend having to make life easier.  I’ve searched Etsy for tube covers and even order Brian a “Tubie Friend” (a stuffed animal made by volunteers that will have the same feeding tube Brian will have).  Daily I refer to life with a tube in an effort to prepare Brian the best I can.  Each night I remind him that he won’t be able to just come to me if he wakes up in the middle of the night.  I’ve convinced Matt that we will need a baby monitor to avoid any tube mishaps during the night.  I go through a million emotions a day from overreacting to happiness that maybe, just maybe, Brian may feel full for a change.

I cannot begin to estimate the amount of children around the world who have feeding tubes.  Some of these kids are in far worse situations than Brian.  Some have had a tube since birth.  We have made it to almost five before needing one.  I know there are parents everywhere who have gone through or are going through this same situation.  We are not unique and our story is not special.

We are preparing for our new normal with a village we know we can depend on for anything.  God is (not so subtly) reminding me to take care of myself so I can be my best for my family.  This is another stepping stone towards keeping Brian happy and healthy.

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I don’t know how I can thank those who have stuck with us on this journey.  October 31 marks four years of living with EoE.  Our village keeps us going through the kindest and smallest gestures, like purchasing Brian safe foods when we are around, showing up with a treat for a Brian and including us in all the craziness that makes life great.  To our Village – thank you for your support, your questions, your advice, your thoughts and your strength.

God only gives us what we can handle?  Of course, because He knows what we are learning…we can handle anything with a village on our side.

Oh, and who am I kidding, my mom still can make everything better, even for a “grownup” like me.

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It is Time

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Four years.

The end of this month marks the four year anniversary of Brian’s first scope and the end of life as we once knew it.  Suddenly our little one year old went from a child with food allergies, to a child who would spend the next four years in and out of countless doctor appointments and hospitals.

It sucks.  There is not a more poetic word to use, either.  For four years Matt and I have fought for the best possible care for our little man.  We fought away the “worst case scenarios,” that is, until this week.

It is official, Brian needs a feeding tube.

The past few months we have endured an epic struggle with Brian over his formula.  He doesn’t want it, and basically outright refuses it.  The problem is, his formula makes up around 90% of his caloric intake.  Without the calories and nutrition the formula offers, we are rolling down a hill of potential danger.  Brian’s weight has been a concern from the very beginning.  Once we managed to get him “on the scale,” the last thing I wanted was for him to fall off.  When we first met with his allergist early this past summer, we were hopeful Brian would tolerate pork and peanuts.  If he could incorporate those two things into his daily diet, then we would be able to hold off on a feeding tube.

We cautiously began his pork regimen, which ended up equaling three pork chops a day. That is a lot for any person, but in Brian’s, case, it may have been too much for his poor body.  From the very beginning we noticed a change in his bowel habits and digestion.  Honestly, my little guy stinks.  I mean grown man farts emit from his tiny body.  I don’t know how he does it, but it is directly attributed to the amount of pork he eats.  It was pretty clear that pork was not going to work out for us, but we were hesitant to remove it because it was helping to keep him full and adding calories to his day.  Also, we hoped it was the amount upsetting him and everything would work out somehow.

The doctors insisted, rightfully so, to test peanuts in office under a watchful eye.  After three hours and various amounts of peanut butter, the green light was given to continue with peanuts.  Brian looked and sounded just fine.  The next morning was a different story.  Brian’s voice was gone…think screaming at a concert all night gone…and was painful for him to try to speak.  I called the doctor and was told to remove peanuts immediately.

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Fast forward to September…peanuts are a no-go and pork is causing a serious digestion issue.  We had a trip scheduled for Philadelphia the beginning of October, so I began the process of calling the doctors and arranging the many appointments.  I put in the request for a scope and waited…and waited…and waited.  Giving the scheduling team the benefit of the doubt, I waited as long as I could before calling the office again.  Finally I heard from Brian’s allergist at CHOP, who said that due to the description of Brian’s digestive issues, it was obvious pork is out and that they did not see cause to put him through a scope.  I mentioned that the possibility of a feeding tube had been addressed and that his doctor in Phoenix felt it should be done during the scope back east.  This led to more questions.  I asked if there was a way to determine if Brian truly was allergic to pork or if he was just eating too much for his body to handle.  She told me she would be in touch soon with the answers.  So I waited…and waited…and waited.  I sent a follow-up email to the nutritionist at CHOP hoping for more answers because time was running out for me to schedule additional appointments.  Matt and I were faced with the decision to either go ahead with the trip, even though chances were slim I could see all the specialists, or canceling the trip till after the first of the year.

This most recent experience was very uncharacteristic of CHOP.  No matter how I tried, I could not get a straight answer on the plan of action.  Matt and I were forced to make a decision.  Money is tight and we could not afford a trip to Philadelphia if I was not packing it with appointments.  We decided to cancel the trip with the hope of rescheduling it for next spring.  Luckily, the rental car I paid up front for was kind enough to refund me all but $20 of the total.

Unsure of our next step, I called the allergist in Phoenix last week and asked for guidance.  Monday’s call confirmed my fear…  The allergist requested that I move up our October 30 appointment to October 5 and asked me to call a pediatric surgeon and schedule an appointment as soon as possible.

After researching and trusting the opinion of a friend, I called an office at 4p.m. on Monday afternoon and was shocked when they said we could come in the very next day. This surgeon came highly recommended and it didn’t hurt that he is a graduate of the University of Notre Dame.  There was only one problem in my eyes…his offices are located at Phoenix Children’s Hospital.

When I entered the hospital for the appointment yesterday, I almost expected to hear a choir of angels singing “Hypocrite.”  I swore off this hospital and I have not been silent about my dislike of the staff there.  But, I trust my friend, and I trust that this doctor will be able to help us.  Plus, I made it very clear to him how I felt about the hospital and he agreed to do the surgery at Scottsdale Shea.  Since we have experience there in the NICU and PICU, Matt and I are confident with this solution.

This kind surgeon went over all of the information with me regarding a tube placement.  He listened to my concerns and Brian’s past medical history.  He decided the best course would be to admit Brian into the hospital the day before for monitoring, perform the surgery, and then keep him at least two more days as long as there were no complications.  During his time in the hospital, I would be taught all things feeding tube related.

Before surgery can be performed, the doctor needed an upper GI with contrast, which is scheduled for October 13.  After that, it will depend on the schedulers and insurance approvals to set a final date.  Matt and I signed Brian up for t-ball in the hopes he may make a friend or two, and we hate the thought of cutting this experience short.  T-ball began only a week ago and lasts until November 18.  Thankfully, the surgeon does not feel we are in a dire situation yet and should be okay to wait till t-ball ends, especially since he will not be allowed to play sports for four weeks post surgery.  If an emergency situation should arrive, we agreed a nasal feeding tube could be placed as a temporary measure.  Until I hear from the scheduler, I sit in limbo.

Tomorrow I will meet with Brian’s allergist and we will discuss the amount of formula Brian needs in a twenty-four hour cycle through the feeding tube.  We also will attempt to find a new food for Brian to trial.  The possibility of a feeding tube always existed somewhere on the horizon, but now it seems to be coming towards us like a tornado and I find myself trying to see the positive in the whole situation.

First off, for anyone wondering, the decision to place a button in Brian’s stomach instead of using his nose is a simple one.  Brian suffers from chronic nosebleeds, which have a tendency to last ten to fifteen minutes.  Less than a month ago I removed two very large and long clots from his nostrils.  In all honesty, I thought it was a worm.  I had never seen a clot like that, and now Brian enjoys showing the picture of said clot to anyone and everyone.  Also, we want Brian to live as normal a life as possible.  It is hard enough to keep him from things so many other kids enjoy.  I do not want him to have to deal with a tube hanging from his nose.  Of course, some of these concerns may be just on me.  I know I have a tendency to over think things and worry too much.  I just want what is best for my tiny human.

Secondly, a feeding tube is not a bad thing.  We have been so concerned about Brian’s weight, and now it won’t be hanging over our heads.  Instead, we can focus on finding him more foods and eventually eliminating tube feedings.  As another perk, Brian may feel full for the first time in a very long time.  Also, I will be able to administer medication through the tube whenever he becomes ill (he had cellulitis TWICE in less than a month, which required a nasty medication).  Now I will not have to fight him to take medicine.

As we wait for more answers and a surgery date, I continue to educate myself on life as a feeding tube mom.  For those who know me, it will come as no surprise that I have started a list of essential items I will need.  I know that knowledge is the best course of action and I will continue to be as proactive as possible.  This isn’t easy and it will tear my heart apart to see him go through this, but Matt and I know it is for the best.  We want Brian to be healthy and happy, and this plan will help to get us there.

If you would like to learn more about life with a feeding tube, please read the document below.  It is packed with helpful information to better understand the journey we are about to take.

Parent Guide to Feeding Tubes

We appreciate all of you for sharing this journey with us, as well as your prayers and support.  This is just another step along the way.  Before we know it, things will be, as Brian says, “Awesome sauce.”

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