New Beginnings

It poured rain at our house tonight.

I always have considered rain to be a way to cleanse the world around us and offer a clean slate.  It is fitting that it would rain at the end of our first day of school, because we are living in a new beginning with a clean slate.

Today went very well and both kids were excited to go to school, meet new friends and see some old ones.  Brian was all smiles when we arrived at school and stayed very strong when I told him I would see him later.

From a safe distance I watched as he played on the playground during recess and ran around with children his age.  It brought an enormous sense of peace, excitement and pride to see him acting like any normal five year old.

This is why we made the tough decision to send Brian to school.  Sure, I spent the first part of the morning organizing epi-pens, inhalers and Benadryl, and going over emergency procedures with the school nurse, but now everyone involved in Brian’s daily routine is prepared.  Our biggest concern is Brian catching a virus of any kind, since it attacks his body more harshly than most.  Fortunately, though, I have a team behind me and that is instilling a new confidence in me and our decision.

I have believed it takes a village to raise a child, and that sentiment only continues to grow with each new milestone we encounter.  There will be roadblocks along the way, but as Brian moves forward with the Class of 2031, I know he will be guided by the support of his teachers, school staff, friends, and family.

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So here is to new beginnings, taking chances and watching my sweet boy grow.  I cannot wait to see what he accomplishes along the way.

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Firsts

Tomorrow is the first day of school.

The bags are packed, water bottles are filled, clothes are cleaned, and the customary “first day of” signs are decorated and ready to stand in the pictures first thing in the morning.

This really isn’t a first for us, because Addi is starting fourth grade tomorrow.  We have had many “first” days of school with her.

The difference this year is the lifestyle change our family is experiencing.

After many, many, many hours of discussion and advice from people far smarter than I am, Matt and I decided it was best to send Brian to school.  We know this decision comes with challenges, so once we made up our minds, I made an appointment with his future school.

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Back to School Fairy brought gifts!

Reason for the meeting??

Easy.  I need a job.

I’ve known that if both kids were in school then it would be necessary for me to return to work, but Brian’s allergies made the idea pretty scary.  Luckily, I think we discovered the perfect solution, and thanks to the generosity and kindness of Saints Simon and Jude Catholic School, the solution became a reality.

So tomorrow isn’t just Addi’s first day of fourth grade.  It is Brian’s first day of kindergarten…and my first day of work after being a full-time mom for the past eight years.  To say I am nervous would be an understatement.

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There are so many emotions running through me tonight.  I am nervous, anxious, excited and overwhelmed at the realization that my “baby” is no longer a baby.  I’m not sure how the years passed so quickly, but I am thrilled to see Brian grow into his own person.  He is ready for school…maybe more than I am.

He is over the moon at the possibility to make friends, play on a playground daily and learn new things.  He has been counting down the days and is bubbling with excitement. Personally, I wish time would slow down.  I’m excited to see him grow into this little person, but I long for the days when I could hold him close.

Deciding to send Brian to school means that I have to accept that some things are out of my control.  Believe me, that has hit me upside the head many times the past four months.  In fact, in some ways it is the reason why I took a hiatus from this blog.  Sometimes when you allow the world into your life, the world can destroy everything you know…but that is a story for another time.

Tonight, I am coming to terms with all the things I will have to let go of, and let God.  Brian is his own best advocate.  He knows what he can eat and what will make him sick.  He isn’t afraid to tell people no.  He is strong and very smart.  I don’t need to hover over him all the time.  Letting go of that need to control his every movement is allowing Brian to become this amazing individual.  Of course, that being said, he can be a brat at times, and I admit that is mainly my fault.

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I’m excited to see Brian branch out and make friends beyond his cousins.  I’m excited to watch from a distance as he plays on the playground or learns to read and write.  I’m excited that I will be on campus to see all the big things and some of the small things for both of my kids, without keeping them from discovering who they are.

I’m excited for firsts…first days, first friends, first experiences.

I’m excited for the lifetime of firsts headed our way.

Pain

How can we accurately measure pain?

How do you really know if someone is truly in pain?

It is such a subjective response. Matt was shot multiple times, but never admitted to being at a 10 on the pain scale. I’ve been in the ER for abdominal pain and when asked to rate the pain, I rarely go above a 6, but Matt is quick to point out to them that I’m lying and won’t admit to the amount of pain I am experiencing. Pain levels vary from person to person and experience to experience.

People I love are experiencing the pain of saying goodbye to a loved one right now. How do we measure their pain on a scale? My entire body is stiff and sore, and my head is throbbing. What number should I give? Brian screams in the night…I have no idea what his pain is like.

When we first arrived in the ER, the nurse asked Brian to rate his pain from 1 to 10. Brian is five. He is learning the value of numbers but has no idea how to rate his pain. He screams, which is supposed to tell me he is in excruciating pain…but how do I know?

I wish I could have some freaky experiment where I touch him and instantly feel what he feels ( I watched the Green Mile last night). Maybe then I could communicate it in a way others would understand. Brian has been in so much pain this past month, that even when they eliminate the problem, he still feels the pain, even if it may be phantom pain now.

Logically, the tube site is sore. The new button appears to have removed the initial problem, which was the tube inside was too long, causing the balloon to be “grabbed” by the stomach to be digested. Basically, the stomach saw the balloon as food and was trying to eat it. The doctor replaced the button with one with a shorter tube, eliminating the problem. Unfortunately, Brian doesn’t understand that and still feels pain. As adults, we know the pain is from healing and residual from the last month. Try explaining that to an insolent five year old.

I had hoped Brian would have a restful night, but since he is slowly feeling better, he is more aware of the pain. His nurse and I tried to rationalize with him at 3:00a.m. and explain that screaming and kicking his legs would not help the pain, but we didn’t make much progress. Instead, he was given some Tylenol to help him sleep for a little while.

A repeat of his blood work this morning showed his CK levels were starting to go down. Brian developed viral myositis, a rare complication of the flu, which caused the pain in his legs. Now that the fluid has done its part, the doctors want to see that he can move around before hopefully sending us home this afternoon. Another contributing factor to Brian’s release is tolerating a tube feeding, which so far has gone very well. Now I just need him to find the desire to eat some of his regular food.

Pain is relative, but so is strength. I forgot to ask Matt for another pair of socks, so I went looking for some in the gift shop. I found these to be fitting.

I know I am strong, but I do fall apart a lot. This journey isn’t easy, but I rely on the strength of those around me…my husband, baby girl, parents, family and friends. They all lift me up when I start to fall, whether by stepping in to help with Addi, stopping by for a hug, bringing coffee, or checking in on me from miles away. The real strength in this room, though, belongs to my little man. I’m only allowed a moment to crumble, because he is counting on me. He shows his unbelievable amount of strength every day. He is my hero and the strongest person I know.

Of course, that may be subjective. 😉

Friend

This little guy above, “Friend,” has been with Brian through everything. All nine endoscopies, five colonoscopies, a tube placement, half a dozen hospital stays and innumerable doctor appointments. Besides Matt and I, Friend is his constant and today is no different.

As I kissed my sweet boy and watched as they took him back, Friend was right by his side. He goes where I cannot and, as silly as it sounds, keeps my baby safe.

Last night was rough, but Friend stayed close by. Brian’s oxygen levels dropped and he had to be put on oxygen. Even with the constant flow of oxygen through his nose, his levels bounced up and down throughout the night, setting off the alarms.

Since nothing ever seems to be easy, the virus Brian has doubled his discomfort and blood work showed the muscles in his legs were breaking down (explains why he cannot stand or walk) and the solution is to flush the toxins out. I always thought Brian peed a lot during the night because of his feedings, but this hit a whole new level. Thankfully, unlike many times at home, Friend stayed close by his head and was not caught up in the overflow throughout the night.

Now I sit and wait for the doctor to re-emerge. I really like him and I’m grateful someone finally listened. He has an idea of the problem and a solution, but only time will tell if he is right.

Waiting is lonely and hard. No matter how many times I go through this or who is sitting beside me, I cannot stop the tears from flowing.

Maybe I need a “Friend” of my own.

Update

Brian just had x-rays and blood work completed. They have decided to admit him into the hospital and will perform an endoscopy in the morning. Hopefully this gives us the answers we are seeking.

Thank you for the continued prayers and support.

Love you all.

Prayers

I need prayers.

We are clocking our third ER visit this month.

After three pretty uneventful and somewhat easy months with the feeding tube, it was time to replace the button. I scheduled an appointment with the surgeon’s office to replace the button, eager to see the process since it would fall on my shoulders to replace every three months after this.

Per the norm, nothing went as planned. Long story short…the nurse practitioner shoved the new tube in while Brian wiggled, causing a tear, which resulted in us spending NINE hours in the ER less than a week later. The diagnosis then was cellulitis and severe inflammation, most likely due to the tear. Medication was prescribed and we were sent home.

During the follow up with the surgeon, all looked good and he decided to keep the larger button that was placed in the ER and add 2ml of fluid to the balloon, which had 5ml already. I thought we were back on track, but I was wrong.

Almost two weeks ago we ended up in the ER again when Brian spiked a fever and was thrashing in pain. The ER docs did a test to determine the tube was placed right and sent us on our way to see the surgeon again. Last week we saw the surgeon and he assured me everything looked great and suggested it might be psychosomatic. He prescribed an antacid to help with the drainage and a new steroid cream for the button.

Brian had tball this past Saturday. He loves running, throwing, hitting and just being a boy, but this time was different. It took gentle nudging from us to even get him to play, and then he resembled an old man while he hunched over, grabbing his side, and running the bases.

Since Saturday it has gone downhill fast. We saw the pediatrician Monday (unrelated – Brian caught a virus causing a cough, sore throat and high fever), and I took the opportunity to express my concerns. Brian won’t let us anywhere near the button. Just the simple task of changing the cover becomes overwhelming for him and Matt and me. Hooking him up to the feeding pump is an exhausting ordeal, and I cannot remember the last time he slept through the night without screaming in pain. She suggested something could be wrong INSIDE (funny…pretty sure I’ve been saying that all along), and she recommended bypassing the surgeon and requesting an endoscopy from the gastroenterologist.

I made my many phone calls after the appointment and was able to schedule an appointment with GI for this afternoon. The plan was to wait, but the last two nights changed everything. After screaming in pain two nights ago and not being able to move much yesterday, I decided to skip the overnight feeding last night in hopes that Brian might be able to sleep. No such luck – he was up screaming consistently between 10:00p.m. and 3:00a.m., which is when I gave him some stronger medicine to calm him. When he woke this morning and couldn’t get out of bed, I knew there was no chance we could wait till this afternoon to see a doctor, so we headed to the ER.

Now I am sitting, waiting, and hoping this time someone finally listens. The doctors and nurses can see how painful it is for him to move and are starting off with an x-ray, blood work, a CT, and possibly admitting him in order to convene with Gastroenterology and Surgery.

This sucks. My baby is five and should be running and playing like a normal little boy. I’m tired of seeing him in pain and not having any answers. Families who have dealt with feeding tubes say they never had anything like this happened. I guess I’m not surprised since unusual dilemmas seems to be par for the course for us.

I’m asking for prayers.

Pray my little man returns to his crazy and happy self soon.

Pray the doctors listen to me.

Pray we find an answer.

Pray for my sanity, which I’m pretty sure is on the way out.

Thank you for being the army behind me and the prayers you send our way.

Five

There…right there…8:00p.m.

At this moment, Brian turns five.

I don’t know how it happened.  It seems like yesterday I was fighting to keep him in a little longer, and here we are, five years later.

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You see, Brian’s birthday should have been five days ago, at least if the doctors had their way.  They were concerned for my health and wanted to deliver on December 12.  I wanted to give my baby the best chance possible and managed to bargain with them to keep him in a little bit longer.

It shouldn’t be a surprise that I fight for Brian now, because I have been fighting for him since before he was born.

I poured myself a mimosa today in celebration of Brian turning five.  After all, Matt and I deserve a pat on the back for making it this far.  It hasn’t been an easy ride and there are times we have felt like the world was caving in, but we always managed to come out the other side.  I’ve said it before and I will say it again…I know how lucky we are.  Brian may not be able to eat, but I know there are millions of parents in far dire situations than ours.  Still, that doesn’t minimize what we, or even more so, Brian, have gone through.

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Think about it…

Brian is five today.  To date he has had nine endoscopies, five colonoscopies, a feeding tube placed, four hospitalizations, numerous doctors, and more needle sticks than I can count.  He has lived through what many won’t experience in a lifetime.  He has been poked and prodded, scrutinized and studied, and still finds the ability to be happy.

There are things that help with his happiness factor, including playing with anything Cars, his family and friends and the chance to chase the dogs.  After all, he is a little boy.  He has more energy than should be possible, gives me heart attacks on a daily basis and jets through every possible emotion within a five minute time span.

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He has bounced back from surgery in an astounding manner.  Once he is released from the tube and pole, he dashes around like any normal five year old.  That is what is so hard sometimes.

Brian is not a normal five year old.  Odds are he won’t be a normal six, seven, eight or so on year old either.  He has struggles, but he also has the strength to overcome them.  He is joy and light all wrapped into one.

He is my baby…my five year old boy…and no matter how old he may be, I will not stop fighting for him and the hope that someday he may live as “normal” a life as possible.

So happy birthday to my sweet boy.  I love you forever and ever.

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Is it over yet?

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I am a planner.

I like to think ten steps ahead at all times, whether with an event I am hosting, planning a trip or preparing my son for surgery.  I try to imagine every possible scenario and how I would handle each one.  I prepare for the worst at all times, but I constantly hope for the best.

I am a planner.

Brian’s surgery has been on the book for almost two months.  We knew this was coming and we have planned accordingly, even though we have a million other things going on around us at the same time.  I knew we would check in the day before for observation.  I knew when the surgery was scheduled.  I expected a phone call.

Instead, after seven phone calls and unbelievable confusion, I discovered late yesterday afternoon that there were no orders in place to have Brian pre-admitted.  In my attempt to plan for every possible scenario, I was rushing around the house organizing for an event this weekend and making sure we had a bag backed.  I did not have time to deal with the confusion caused, yet again, by Phoenix Children’s Hospital.

Thankfully, I was put in contact with a wonderful woman at Scottsdale Shea Hospital who made it her mission to find an answer.  Then, at 3:45p.m., I received a phone call telling me to come to the hospital now.  After the unbelievable confusion and lack of communication, I did not want to risk Brian not having anything else to eat, so on the way to the hospital we stopped at In ‘n Out for his “holiday” fries.

Although happy with his fries, Brian informed me multiple times during the ride that he was scared.  He kept asking if it was time for the tube and wanting me to stay by him.  I reassured him that mommy and daddy would be there and we would keep him safe, but in reality, as I sit in a waiting room, I realize how very little control I have right now.

I cannot plan for this.  Today is out of my hands and I am scared.  I know that the tube is a good thing, but I hate the pain my poor baby is going through.  I want to make it better. I want to give him the life he deserves with parties full of cake and too much ice cream.  I want him to be able to order Happy Meals and not just enjoy the toy.  I want his normal to be different.

As much as I try to stay one step ahead of every possibility, right now I have to trust the doctors to take care of my little boy. During a difficult IV placement last night, while screaming in pain, Brian kept looking at me and asking if it was over yet.  Before they took him back for surgery he whispered, “Is it time for the tube?” and his eyes filled with fear as I whispered, “Yes.”

I told him I loved him and I promised I would be there when he woke up.  That is all I can do right now.  I cannot make any of this go away and no amount of planning will prepare me for this new normal, because I really do not know what to expect.  I have read plenty of articles and I have tried my best to be prepared with supplies, but until I am in the moment, all I can do is wait, and of course, over think every possible scenario to death.

I’m used to being the “strong” one.  This isn’t the first time I have left Brian’s wellbeing in someone else’s hands and it definitely will not be the last.  I can do this because I have to.  He is my child and I would give my life for him.

Still, I am so grateful to my friends and family.  I may not show when I am hanging by a thread, but the little things they do pull me back and renew my strength.

Thank you to the friends  and family who show up.  To the ones who put complicated Lego kits together.  To the ones who make sure Matt and I are fed and Brian has his fries.  To the ones who right this moment are sitting at our home to make sure it is spotless and professionally clean when Brian returns.  To the ones who text, email, call, comment and every other form of communication.  Your thoughts and prayers mean so much more to us than I can explain and we could never thank you enough.

To my sweet boy, who during his own pain last night still wanted to pick a toy for his sister out of the toy closet, I hope it is over soon, too.

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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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