Moving Forward

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Yesterday Brian and I met with his Allergist.  I really feel at ease with her and it was great when she went looking for a nurse to play with Brian so I could focus on what she was saying.  But Brian being Brian, he chose to climb all over me instead of playing with someone new.

After discussing the results from his endoscopy and identifying that Brian has lost a pound since she saw him last, she showed me a game plan for reintroducing food into Brian’s diet.

There are four groupings of food.  Food is placed in each category based on what the doctors have learned from previous cases, and which foods they feel have a higher reaction rate.  When beginning a food trial, three to five foods are chosen from the first grouping (just a sampling of fruits and vegetables).  Each chosen food is introduced for five days and the child is monitored for any possible reactions.  If adapting well, then another food is added to the diet for five days, and so on and so on.

Brian’s doctor and I examined the food lists and discussed reactions he has had in the past, whether through an allergy test or a physical reaction after eating.  Although apples fall in the second grouping, we felt this was a food Brian is comfortable and familiar with, making it a good starting point for the trial.  We also decided to limit his food to three options at most, and we hope he will be so excited to eat food, that he will eat something he normally wouldn’t.

After two months on the food trial, another endoscopy is performed and biopsies taken to see if there are eosinophils present.  We decided to keep his food options low so that we have a better chance of identifying the food allergy if eosinophils are found.  If we were to go with five foods, it would be harder to identify the culprit and we would have to start all over again.

In addition to figuring out Brian’s medical game plan, we talked about what was best for him as a patient.  I began our appointment by letting her know we wanted to complete one food trial under her supervision.  My hope is that I will have a foundation to take back to Phoenix and will know what she expects when I work with a different doctor.

Of course, I said this before she explained the time frame.

Since it will be mid November before he has his scope, we discussed the possibility of Brian and I returning home and then flying back to Philadelphia for the endoscopy.  The other option is to remain here until the next endoscopy is completed and hopefully be home for Thanksgiving.

While at the appointment, she completed skin testing on some of the foods Brian tested positive before, and added some external allergens like dogs, cats, and grass commonly found back east.  Thankfully, all of his results were negative.  This opens up the foods we will be able to trial, as long as there is not a physical reaction after he eats or drinks said food.  We also decided to avoid any foods that may have tested negative, but Brian has a history of being ill after eating them.

We finished the appointment by scheduling another round of skin testing for next week and the decision to begin trialling apples in Brian’s diet.

As soon as I was in the car, I called Matt to fill him in and asked him to contact our insurance representative.  We had discussed and agreed that we were in this for the long haul, and he agrees with wanting the first food trial to be overseen by his doctors at CHOP.  Of course, he wants us home too, so he is open to the possibility of us flying back here in November.  We are in a state of limbo until we hear from the insurance company.  I left the appointment believing we could be home as early as next weekend or not until November.

Then last night happened.

I went to my cousin’s house after the appointment and she graciously offered an apple for Brian to eat.  It was the first solid food he has eaten in seven weeks and he was THRILLED.  I was overjoyed to see him eat each entire piece, skin included.  My excitement probably got the best of me as I allowed him to eat more than he probably should have, but he had only had 11 ounces of formula all day (should be drinking 48 ounces) and was refusing to drink anymore.  I knew he had to be hungry and it was nice to see him holding something other than a bottle.

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My excitement was short lived when we arrived back at the hotel and I heard the worst sound coming from my tiny boy.  Fearing I had a huge mess on my hands, I rushed to grab the wipes and a new diaper.  What I found was the apple, completely undigested.  I cleaned him up and put everything away just in time to hear it happening again.  It was obvious it was causing Brian discomfort and I began to fear a reaction.

This morning I spoke with a nurse who recommended we stop the apples until she talked with the doctor.  I wondered if his stomach couldn’t process the food after being on just formula for so long, or if this was a sign that apples could be a problem.  Nothing with my little man is easy, so why would this be any different?

Hopefully, if it is a reaction, I can try a new food tomorrow…maybe carrots.  If it is a normal occurrence following an elemental diet, then I will start again with a smaller amount of apple pieces.

It is hard and frustrating, because after this happened it came to mind that I should stay here till November.  I live with the fear of Brian having a reaction and I am so far away from his doctors.  I know I will have to get past this if I plan on having doctors back home continue the food trials after the first round, but I guess for now I need a foundation to cling to and his Allergist is offering just that.

I feel as if I am right back where I started.  Whichever decision I make will have consequences.  If I stay, I miss out on being with my family and events coming up.  If I go, I risk backpedaling on three months of progress where Brian is concerned.

To some that may sound cynical, but really I am trying to be realistic.  I trust the doctors we have met here and the work they are doing for Brian.  I am beginning to research potential allergists back home to take control, but we were burned before, so I hope you can forgive my hesitancy.

In addition to the personal aspect, what our insurance decides will be a huge factor.  I am hoping that they will be willing to work with us since I have done everything they asked so far.

Just like before, until the phone rings with news from the doctor or insurance company, we wait.  Brian will have more tests next week and we will try to take it one day at a time…hopefully with food.

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Good News…Bad News…

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Fell asleep waiting for Daddy and Sissy to arrive.

I think it is only fair that I begin this post with a warning…things are about to sound VERY confusing.  Please bear with me while I try to explain.

Last Friday I heard from the GI department at the Children’s Hospital of Philadelphia.  For a week I had been praying and holding my breath waiting for this call.  The saddest part is that I don’t know what “answer” I was hoping to hear.  Whatever they had to say, I knew a multitude of questions would follow.

So for the good news: Brian’s endoscopy and colonoscopy came back negative for any eosinophils.  They found a single, large allergy cell, which they attribute to acid reflux.  This means there were no eosinophils in the esophagus or his intestinal tract.  Sounds promising, right?

Now for the bad news:  All of the foods I have been feeding Brian up until seven weeks ago were not safe.

A negative result does not mean that Brian does not have eosinophilic esophagitis.

Confused yet?

Allow me to try to explain.

Brian had his first endoscopy October 31, 2014.  The biopsies showed an eosinophil count high enough to be diagnosed EoE.  When we met with different doctors on February 2, 2015, they felt that it may not be accurate because Brian was not on a PPI, like Nexium, to rule out acid reflux.  They placed him on Nexium, kept him on his regular diet of food and formula, and scheduled an endoscopy for March 30, 2015.  The biopsies from the second scope showed a more than double increase in the eosinophils.  From my understanding, since Brian was on Nexium, the only cause for the eosinophils would be that he was eating food that could be considered dangerous to him.

Unfortunately, unlike many food allergies, Brian shows outward signs to certain foods, and other foods cause issues that can be identified only through biopsies.  This means that Brian’s list of “unsafe foods” may be a lot longer than we realized, and that the few foods I have clung to as safe, really are causing the most damage.

On July 30, 2015, we met with the EoE clinic at CHOP.  In order to receive the most accurate results, the doctors removed ALL food from Brian’s diet and placed him on an elemental diet of just formula.

Fast forward to today and the various tests seem to show that Nexium counteracts any signs of acid reflux, but if left on food, the eosinophils will continue to be present, unless a safe food is identified.

As I write this, I glance repeatedly at my phone, willing it to ring with an appointment in the allergy clinic as soon as possible.  Now that we have the results, the hard work lands in the capable hands of his Allergy Doctor and Nutritionist at CHOP.  I am hoping they will run allergy tests for any external allergies (he still breaks out when he plays outside for any length of time) and determine if we can start a food trial.

It is customary for EoE patients to have a negative scope before they are allowed to begin food trials.  If I am remembering my science classes at all accurately, this last test will serve as the control (Is that right??  Brain doesn’t want to work anymore).  Now, the doctors will follow a plan of introducing foods one at a time into Brian’s diet.  The trial foods will be determined based on allergy tests, previous reactions and other factors.  Once a food is chosen, it will be added to Brian’s diet and then a repeat scope will be performed.  If the results from that scope are negative, then the trial food is deemed safe.  If eosinophils are present, then the trial food is avoided and we start over with another food.

I have read and heard that this process can be long and frustrating.  My ultimate hope is to begin the trial and put a plan in place that can be monitored by the doctors at CHOP, but followed through by a doctor they recommend in Phoenix.  But until my phone rings and an appointment is made, all of this is speculation on my part.

While it may be confusing to try to understand why I am not rejoicing with these results, the simplest reason I can give you is that I want this to be over.  I want Brian to be on a path to living a happy, healthy life, and more than anything, I want to go home.

But, Matt and I made a choice together.  We want the best possible care for Brian, which ensures the best possible future.  I am committed and will hold on as long as it takes.

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That doesn’t mean every day is easy.  This morning I watched as Matt and Addi made their way through security.  Their visit this past weekend was too short.  Thankfully, Addi is a lot stronger than I am.  Maybe that is due to her childhood innocence and the fact that she knows she will seem me soon.  I’m struggling with the not knowing when that will be.

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Uncertainty drives me crazy, and not having an appointment in place yet is pushing me towards a breakdown.  I am living in a limbo – do I purchase plane tickets for Brian and I to come home, or tickets for Addi and Matt to visit again?  Until my phone rings, I will not have an answer.

I am carried through by the kindness and support of everyone who is following our journey.  I feel helpless because I want to do something, anything to show my appreciation and gratitude.  It is not easy for me to be the one needing help.  I pride myself on being there for others when they need it, and this experience has been humbling to say the very least.

For those of you back home with events Brian and I have missed, know how much I wish we could be there.  Please know that we miss home and look forward to being back as soon as we can.  Thank you for thinking of us.  Your little messages on Facebook, texts and silly cards keep me smiling.

For those who have welcomed and taken care of us here, I will never be able to repay you for the strength you are giving to me.  Thank you to everyone who offers me a warm place to go when days are tough.

Keep the prayers coming…our journey continues to move forward.

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UPDATE:  WE HAVE AN APPOINTMENT!!  Meeting with the Allergist tomorrow at 1p.m.  Wish us luck.

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Brian amazes me.

I don’t know how a two year old is able to adapt so well to all that life is throwing at him.  Yet, he does, because he is resilient and he doesn’t know life to be any other way.

These past few days, Brian has been placed in situations that would be trying for any normal two-year old to be on his/her best behavior.  After all, not many small children have the ability to grasp the beauty and historical information found around Philadelphia’s Center City.

After removing him from a tour at Independence Hall (they ask for quiet…he was not complying), my friend remarked that many of these issues possibly could be solved if Brian was able to have “snacks.”  It is scary how true this statement is.

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Elecare…Safe to eat and as a toy in the sand.

So much of our lives seems to revolve around food…when do we eat…what will we eat…can we have dessert?

Sometimes it makes me sad to think of all the food Brian has yet to try and may not be able to.

Still, she was correct.  I used to pacify Addi during many events or outings with her various snacks.  She loved Puffs and I kept those in a constant supply to have on hand when I need to be out and about, and I need Addi to be on her best behavior.

I did the same with Brian, although his snack options were very limited.  After being off of food for six weeks, I find I have to be more creative with his distractions.

When we are in a situation where it is helpful if Brian is quiet and he begins to act up, I do my best to remove him.  Letting Brian run around helps to burn his pent up energy and allows me to calm down as well.

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I am not supermom, and I would never claim to be.  I am doing the best I can and I have the ability to acknowledge my shortcomings.  One of my biggest downfalls is caring too much about what those around us think when Brian begins to act up or is too loud in a restaurant.  I was the same way with Addi.  I know I shouldn’t care and maybe some of those around me don’t care, but I have tried my hardest to not be one of those parents who sits idly by while his/her child screams and carries on.  My mom taught me that when we were kids, if we acted up in a store, we would leave.  There have been times I have put items back and left a store because Brian was screaming.

These situations could have been different if I was able to provide a snack.  Instead, if I cannot remove him, I try to distract him.  I will offer him some of my water (he loves drinking from an adult glass…and spilling the water down his front), give him my phone and Disney Jr. app, pull Hot Wheels from my purse (I keep a supply of cars for these occasions on me at all times) or a coloring book, or I find a distraction around us.  The container of sugar packets works great and teaches him how to sort and place things neatly away (educational and fun!  Win!!).  Sometimes these distractions work and sometimes they don’t.

Another issue the lack of food is causing revolves around Brian’s bottle.  I have been reassured by his dentist and pediatrician not to worry about him using a bottle still (he will not drink his formula out of anything else), but I am concerned that the bottle has become a comforting addition to his day.

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Brian still is not drinking as many bottles as he needs to, and it may be because he tends to walk around with his bottle in his mouth (or falling asleep), but not actually drinking its contents.  Far too often I can hear him sucking in air and I have had to throw away one top because he chewed a hole in the nipple.  We were fortunate that Brian weaned himself off his pacifier quite a while ago, but now, as I wait to hear back from the doctor, I am contemplating reintroducing it just to keep him from taking in so much air when he walks around sucking, but not drinking, his bottle.

These are some of the thoughts that race through my mind on a regular basis.  I constantly try to do what is best for my little man.  I am beyond grateful for my best friend and everything she did to keep me occupied while she was here.  It was good to not stress as much as I normally do, and she kept me well fed!

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While I sit here drinking my coffee and Brian has his bottle, I realize I cannot change the importance of food in this world.  What I can do is love my son and try my best to find more important things than food in his world.

I sure am glad I have Buzz Lightyear and Thomas the Train to help me.

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Good Day

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Today was a good day.

If you have never been through a colonoscopy, then consider yourself lucky.  Brian just endured his third in less than a year, with an endoscopy for good measure.  Actually, the endoscopy was the more important of the two, but I digress.

My point is, prepping for this exam can be brutal for an adult.  As a tiny human, it is heartbreaking.  But, Brian is amazing.  He had one minor meltdown yesterday and for the rest of the time, drank his Miralax flavored Gatorade like a champ.  When he woke up in the early morning hours, I was able to wrap him in my arms and he fell back asleep.  At six in the morning, it was a different story.  We heard him ask for a “baba” for three hours straight.

Still, aside from being hungry, he handled the prep and before the procedure like a true superstar.

The doctors, nurses and staff were wonderful.  They talked me through every little thing they were doing and allowed me to hold Brian while they administered the gas to help him sleep.

Have you ever held a crying baby in your arms and when he/she finally quiets down you can feel the tiny body relax?  It is a comforting feeling.  This was nothing like that.

Brian was not happy about a mask being placed on his face, which meant I had to hold him tight against my chest with my hand behind his head, two nurses each held an arm, and the anesthesiologist held the back of my hand on his head and the mask.  At one point Brian tried to push off me with his knees.  When he finally went limp and stopped fighting, my heart broke.  I was able to kiss him and as I left the room I broke into tears.  No matter whether it is the first time or the third, it doesn’t get any easier.

Even though the overall procedure time did not take long, it felt like eternity.  Then suddenly my tiny little man was wheeled back into the room, and he looked like a perfect angel.  At the time he was on oxygen still, but the nurses and doctors assured me he had done great.

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Just like with his two previous endoscopies/colonoscopies, the visual pictures appear normal and unremarkable.  Hopefully, we will have the results of the biopsies by early next week, and then we will know where to go from there.

The anesthesiologist was concerned with Brian’s blood sugar level, so he encouraged me to allow him to drink as much formula as he wanted.  Brian was sleeping for quite some time, so it took a little nudging on the doctor’s part to finally wake him up.

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Naturally, after having not eaten for sixteen hours, Brian was eager to down bottle after bottle.  He consumed twelve, heavily concentrated ounces in a blink of an eye.  I was leery of giving him so much so fast, but the nurses reassured me.  The first blood sugar reading was low, but forty-five minutes later it increased significantly and we were allowed to leave.

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Brian did all right going from the hospital to the car, but once we hit the street, we were met with heavy traffic and rain.  The stop and go did not seem to agree with Brian’s fragile system, and as I was unbuckling him from his carseat, he returned all twelve ounces of formula and then some to me.

I am so grateful I did not have to handle the aftermath alone, and thanks to my best friend’s help, we were able to wash the carseat, put Brian in the tub, throw all the clothes into the washing machine and focus on a way to clean the inside of the car.

Sadly, due to the rain, there was not a single carwash available near by to assist in the matter, which meant I had to scrub the seats and floor mat myself.  Hopefully I did a good job and the smell of formula will not linger.

After emptying his stomach and taking a bath, Brian was ready to go.  He has been able to drink multiple bottles since then and is bouncing around like a normal two year old.  Overall, I am thrilled with the experience.

In hindsight, it probably was a bad idea to give Brian so much formula at once, but other than that, the entire event went off easily and without issue.  Brian woke up just fine, his heart and lungs did great, and there wasn’t a violent reaction.  Considering how the last two ended, I would call this a success.

Until we hear more from the doctor, we will continue with a formula and water only diet and monitor how he does.  Regardless of the final outcome, today proved that traveling across the country to one of the best children’s hospital definitely was worth it.

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Side Note:  Thank you to everyone for the messages, kind thoughts and prayers.  I hope you all know how much you are appreciated.

Hard

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Being a parent is hard under the best possible circumstances.  When you add a few hills along the path, some days are unbearable.

This past week, Brian had an episode.  We were out running an errand when he fell asleep.  I didn’t want to wake him, so I took the opportunity to feel nostalgic and drove through the neighborhoods where my grandparents grew up.  After sleeping for a short time, Brian woke up screaming, kicking his legs and saying, “It hurts.”  It looked like he was trying to pull his knees to his chest.

When this happens, there is nothing I can do to make him feel better.  Whether I am holding him or he is strapped in a carseat, he will writhe in pain, this time for over thirty minutes, and then suddenly stop.  Once he stops, his poor body seems exhausted and sometimes he falls right back to sleep.

While he is screaming I feel like the worst mother in the world.  I know that what is happening is not my fault, but as a parent, I don’t want my children to EVER feel pain.  Aren’t we supposed to make our children believe we live in a sunshiny world with nothing but kittens and puppies?

Of course I am dripping in sarcasm.

I may not be able to make everything better right now, but I am trying.  These episodes are exhausting for me, too.  When holding Brian doesn’t work, I try to drive around, hoping the drive will lull him back to a peaceful sleep.

On top of the random episodes, Brian is not sleeping well at night.  He tosses and turns, and sometimes wakes up crying.  The other morning he woke up saying, “Mommy, where are you?  Mommy, where you go?”  I was lying next to him, but in his panic, he couldn’t find me.  Once I wrapped my arms around him, he calmed down, but a couple hours later he woke up crying uncontrollably.  I was having trouble understanding him as he screamed, but eventually realized he was asking for nuggets.  Brian has not eaten anything but formula in almost five weeks.  I only can assume he was dreaming about nuggets, leading to his outburst.  I gave him a bottle and helped him fall back to sleep.

When Brian doesn’t sleep well, I do not sleep well.  I also find myself staying up too late just to watch a show by myself or read a little.  I know that I should go straight to bed, but sometimes it is hard to be “on” all the time.  Staying up to watch a movie that is not cartoon based or catch up on Criminal Minds, is my time, and I value it beyond belief.

The combination of neither one of us sleeping well came to a head on Sunday.  Both of us were tired and cranky.  I am beyond grateful to friends who attempted to lighten the mood and distract us with outings.  Brian was able to bottle feed a goat and throw food to monkeys and a raccoon.  This seemed to brighten his mood a little.  It took a Red Bull and coffee to perk me up and see the humor in all of it – the humor being Brian was about to take a long, late nap, meaning he would be up most of the night.

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During these moments, I know I am short with Brian and that I become frustrated with his meltdowns.  I also know it is not his fault, which is why I end up beating myself up by the end of the day.  I wish I could pretend that I am some crazy super mom who never yells at Brian or reaches a breaking point, but that just isn’t true.

Luckily, the rough days are few and the days of chasing each other, tickle wars and holding him upside down while I do squats and he giggles are the majority.  Even during the hardest times, his smile reminds me of the bigger picture and how much I love him.

My love for him is why I have been living away from my family for three months and doing everything in my power to fight for him.  It also is why my frustration grows when I see his tiny body covered in another rash.  Right now the rash is faint, but my eyes are trained to see it.  I hope it doesn’t grow to something worse in the next couple days.  On top of this, I have no idea what caused it.  Maybe it was being around the animals, or running in the grass, or maybe there was some cross-contamination I didn’t catch.

Regardless of the cause, it stresses me out.

I also am stressed by what being on Miralax is doing to my poor boy.  It scares me to see what his bottom will look like after I give him a GIANT dose on Wednesday to help clean him out (right now it is raw and bleeding on only a half a capful a day).

As the days before Brian’s endoscopy and colonoscopy dwindle away, my stress level grows.  I want nothing more than to receive some answers to what is happening.  It sounds crazy, but I need validation.  I need to know that all of this was worth it.  I know that for Brian’s health it is worth it, but I need to know crossing the country was the right thing to do.

All of these feelings and fears are normal, and I know that, or at least my rational mind does.  But those who know me know that I am REALLY good at stressing over anything and everything.  So no matter what anyone says or tries to rationalize for me, I will continue to stress through this week and most of next until I receive the biopsy results.

I will continue to push forward, and remind myself day after day that while being a parent is hard at times, my baby boy makes every moment worth it.

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