Home again, Home again

Less than an hour from now Brian and I will board a plane again to head home. I wanted to come up with a silly alternative to the home again, home again nursery rhyme, but my brain refuses to focus right now.

Even though we are leaving with questions, it is comforting to know the doctors have some ideas. Brian and I will return to CHOP the last week of May for follow-up tests and maybe then we will have the answers we seek.


I know it sounds odd when I say I am praying for a positive test result. I do not want my child to be sick, but since that is our reality, I need to be prepared. Positive tests results mean I will know the monster I am up against. I can prepare and plan for battle. Those who know me know I need to have a plan. 

Right now we are fighting a faceless enemy. We know it is there but have been unable to name it. We are not making up his symptoms…something has to be to blame.

So I will say my silent prayers over the next week for a result that has answers. Then, good or bad, I will prepare for battle, either against an enemy or the questions that linger.

No matter what, I will fight for my child. 

For now, as Brian says, “I want to go home.”

Right Direction 

Brian came through his endoscopy and colonoscopy like a champ.  


Once we were able to wake him and feed him a baked potato, he was full of energy and ready to go home.  Of course, as soon as he heard we were leaving, he asked if we were going to Target to get the garage.  

We loaded up and headed to Target. Along the way Brian fell asleep and when I woke him up he was soaked. Thankfully I had our suitcase and was able to change him in the car, but the fresh clothes would be short lived.

We were in Target mere moments before Brian looked at me in a frightened way. That morning the doctors had examined his colon, large intestine and into the small, taking biopsies along the way.  The after effects of the procedure were taking their toll and catching us both off guard.  I grabbed a package of wipes and a package of underwear, and set to work cleaning him up.  We were now on underwear number two, and he would go through three more before the night was over.

We ended the night in pjs at our hotel. Brian played happily with his new toy and I took the opportunity to relax a little. I ordered some Chinese and found the fortunes to be signs:

“A cautious person leaves no stones unturned” and “You are almost there.”

I took these to mean my constant quest for answers was on the right track, starting with an appointment with an immunologist.

Today we met with an immunologist and her team. After lots of questions and explanations, she decided to run some blood tests, including ones involving a possible auto immune disorder, which possibly would explain Brian’s thinning hair, paleness and other issues.  She said the results would determine additional tests, but it would be ten days before we would know for sure.

I feel like I am stuck in a dark spot between wanting Brian to be okay and wanting the tests to show something wrong so we will have answers. This also means we have to decide if we should stay for the additional tests or return home Saturday and then head back to Philly next month. I was frustrated again with the lack of faith I have in the doctors back home.

Brian screamed through the blood draw and ended up falling fast asleep in the car. Meanwhile, I spoke with the GI nurse who said the endoscopy results were great, but the colonoscopy showed large amounts of inflammation. His doctor was unsure of the cause, but promised to look for answers.

Tomorrow we will meet with Brian’s allergist and nutritionist and hopefully receive even more answers. 

I know we are heading in the right direction and I believe the fortune when it says we are almost there.

Battered and Bruised

Today I awoke battered and bruised; physically, mentally and emotionally.

My arms and legs show the signs of tiny fists and kicking feet trying desperately to understand what is happening and angry that mommy won’t give him what he needs.

I held him through a tube being placed in his nose and the screams that came after. I rocked, I carried, I sang till peace settled across his face.

This process repeated through an IV insertion in the middle of the night. At some point I lost track of time as nurses checked his sugars every so often. Morning brought a low sugar reading and a very lethargic little man.

I am powerless…how must my sweet boy feel?

Matt once took pictures of Brian thrashing in my arms. He said he wanted Brian to know what I went through for him.  Here we are two years later and I still hold him. I don’t need him to know what I went through; I just need him to be okay.

October 31, 2014 was the first endoscopy/colonoscopy of this journey. Since then we have cried together through six more. April 24, 2017 marks scope number eight. 

I can tell you exactly when and where each scope happened. I cannot forget my sweet boy’s face as the anesthesia took over.  I remember every doctor and nurse along the way. I feel like I am becoming an expert and it sucks.

Fortunately, these doctors are amazing. They are working on scheduling more tests and appointments with other specialists. I am so grateful for all they do.

I am sitting in an empty pod, waiting for my little boy to return. “Friend” rests in my lap. All around me people are talking about the most ordinary things. 

How did this become my ordinary?

I Want to Go Home

Brian and I arrived safely in Philadelphia on Thursday morning.  In the future I should rethink overnight flights.  Brian was fantastic and slept the whole time.  Unfortunately, I did not.  Twenty minutes in thirty-eight hours was not enough to keep me positive and upbeat.

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Still, Brian was excited to ride in a “woo-woo” car from the baggage claim to the rental car.  Our awesome escort even turned on the lights for Brian’s enjoyment.  We were able to visit with family during the day and Brian had a great time.

Before meeting friends for dinner, I made a stop at Target to pick up some supplies for Brian and, of course, pass through the toy section.  Brian found a set of Disney Cars he just had to have and another toy garage to use with the cars.  I convinced him to go with the cars for now, but we would return to get the garage after we went to the hospital.  Brian thought this over.  While I made our way to the front of the store, he looked up at me and said, “Mommy, I don’t want the garage.  I don’t want to go to the hospital.”

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Traveling is too much for him. Time to sleep.

My sweet little boy had made the connection: doctors, needles, appointments, hospitals all lead to toys.  If he removed the first part, he would not receive the toys, but at least he wouldn’t need to be poked and prodded.  My heart broke in the moment.  I’ve often said that Brian is spoiled rotten because whenever he has to experience something unpleasant we buy him a toy, because candy, ice cream or other bribes are not a possibility.  Plus, I figured he liked receiving the little gifts.  This revelation on his part made me feel like a horrible mother.

Usually traveling is an exciting adventure, but Brian has seen through all of the playtime with cousins, reunions with friends and little gifts.  He has made himself clear from the first night we arrived, “I want to go home.”

He doesn’t understand the distance we have travelled.  He wants to know why we cannot go home to daddy and sissy.  He doesn’t want to see any doctors and he doesn’t want any toys.

I woke him yesterday morning to go to a doctor’s appointment.  Before starting the long drive, he told me he didn’t need to see the doctor and wanted to go home.  I tried to bribe him with the fun toys they would have at the doctor’s office, but he wasn’t interested.  Luckily, he fell asleep quickly and didn’t put up a fight when we arrived.

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Waiting for the doctor.

Doctor Liacouras is wonderful and it is refreshing to leave an appointment fully confident in a decision.  Traveling across the country is worth every penny for the quality care we receive here.  He calmed many of my mommy nerves and offered suggestions for further answers.  We also learned that Brian will be admitted into the hospital at 10a.m. Sunday morning.  He will have an IV to monitor fluid intake and an NG tube will be inserted to facilitate the clean out before his colonoscopy.  I am dreading what tomorrow into Monday will be like.

After his appointment I emailed my contact within the EoE clinic and expressed my concerns regarding some of his other symptoms.  I do not deny that I probably am a crazy and overprotective mom.  Maybe I am reading too much into nothing, but my gut is telling me that we have missed something.  I expressed my concerns and now I wait and hope that his allergist/immunologist will order more tests to be completed while we are in the hospital.  I do not want to put my child through more pain, but I would never forgive myself if we learned in the future that there was something wrong and I did not fight hard enough for answers.

I’ve run out of answers to Brian’s constant question as to why we cannot go home.  I don’t know how to make this easier on him.  More than anything, I wish I knew I was doing the right thing.  That is an answer I may not receive for many years.  Hopefully I will look back years from now and be confident in every decision Matt and I have made for Brian’s well-being.  At least, that is what I am praying for today.

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My sweet, sweet boy.  He climbed into bed with me this morning to snuggle.

Yes, Brian, I want to go home, too.

Planes, Automobiles and Hospitals

In a few short hours, Brian and I will board a plane for Philadelphia.  For months I have been planning for this trip – organizing appointments, discussing medical history, begging for answers.

It has been a roller coaster of ups and downs since I wrote last.

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Brian and daddy

For instance, Brian’s endocrinologist decided to close her doors.  Since returning from Philly, I have found this particular doctor to be one of the few who championed for Brian.  She educated other doctor’s during hospital stays, listened to my questions and concerns, and seemed to put Brian’s well-being first.  I was devastated when I received the text message (yes, they notified via text and email) that they would no longer be seeing patients.  The idea of finding another endocrinologist seemed like an uphill battle I was not ready to tackle, and in some ways it was.

During the many conversations with nurses at the Children’s Hospital of Philadelphia, I was instructed that with Brian’s irregular blood sugar history, I needed to find a new endocrinologist and see this new doctor before arriving in Philadelphia.  This task was easier said than done, since all of his endocrinologist’s patients were bombarding the same group of suggested doctors looking for appointments.

After my many difficult experiences with Phoenix Children’s Hospital, I tried my best to steer clear of their department and instead reached out to a doctor with a private practice.  His nurse was very kind and although he was booked for months out, she felt we were a priority and promised to speak to the doctor.  The next day I received a call from her with disappointing news.  According to the doctor, Brian was too “difficult and complicated” a patient and I needed to find a doctor directly linked to a hospital and a team of specialists.  I’m not sure how I should feel to know that my kid is too much for a licensed doctor to treat.

I broke down and decided to call the recommended doctor associated with Banner Children’s Hospital.  While I am not thrilled with Banner, Brian’s local gastroenterologist is associated with them, which meant the main medical history and information would be in their database already.  Although I did not have high hopes, I was beyond grateful when the receptionist told me she could fit me in on Tuesday, April 18, the day before we left.

Planning a trip with a small child is a special kind of hell at times, but when your child comes with a suitcase full of medical supplies, it can be a time-consuming and exhausting process, but I was not about to let this small blessing slip by me and graciously took the appointment.  I believe God has a hand in the biggest struggles and this appointment turned out to be a blessing.  While discussing Brian’s medical history and medication dosage, his new endocrinologist commented that Brian has only grown a quarter of an inch since December, and he felt it was best to increase his dosage.  I explained that while the medication is concentrated for a “pen,” we use an insulin needle because it can be administered faster.  After working the math problem forwards and backwards multiple times, it became overwhelming evident that we had a problem.  For the past nine months, Brian was receiving 1/7 of the dose he needed to maintain his blood sugar and GROW.  We had been instructed by the previous nurse to give Brian 5ml every night, but in reality, the dosage conversion showed Brian should have been receiving 36ml every night.

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Brian and his “girlfriend” Pippa.

I know doctors are not perfect.  They are human and make mistakes.  This mathematical error was a mistake, but a mistake that was taking its toll on Brian’s well-being.  Suddenly the events of the past months began to make sense.  Brian would wake up in the morning with low sugar and it confused me since he wasn’t sick.  His sugar would fall drastically during the day or when a fever struck.  His tantrums increased and at times he appeared to be possessed – sweet one second and violent the next.  According to his new doctor, Dr. Hahnke, the wrong dosage could be the explanation.

Last night I administered the first CORRECT dosage and it shocked me to see how much medication I had to push into his small leg.  He took the shot like a champ and promptly replied, “That didn’t hurt.”  Now I sit and cautiously hope the medication will do its job and things may settle down.

With his appointment out-of-the-way, I relayed the information to the nurse at CHOP and it was decided that since Brian’s body will need time to adjust, it was best for Brian to be admitted into the hospital Sunday afternoon in preparation for his colonoscopy and endoscopy on Monday morning.

Most parents want to avoid having a child in the hospital, but I see it as a blessing.  The nurses, endocrinologist team and doctors will be able to monitor his blood sugar during his “clean out.”  They will make sure he has fluids and take a huge weight off of my shoulders.  Also, after speaking with the nurse, I will try my best to see if another specialist might be able to check on him.  The nurse asked if he has seen a rheumatologist, immunologist or oncologist.  I told her no but would love to have one of the first two as consults.  The last thing I want to think about is needing an oncologist.

This extra concern stems from the ups and downs we have experienced the past few months.  Below are a list of things that have happened with no explanation:

  • Low blood sugar after eating (now attributed to wrong dosage)
  • Bloody noses without cause (nostrils are not dry and he wasn’t picking his nose) – This includes waking up with blood all over the sheets or drops falling while he watches cartoons.
  • High fevers without any other symptoms and they do not respond to medication
  • Bruising easily
  • No bone growth – x-rays taken one year a part show Brian’s bone age to be that of a two-year old.  Although he is taller, it does not appear the density of his bones is changing.  This could be due to the lack of calcium (his formula is meant for infancy, not forever) or the wrong growth hormone dosage.  His allergist told us to be prepared for Brian to have osteoporosis at a young age.
  • His face is paler than the rest of his body.
  • Difficulty sleeping
  • Blood in his stools
  • Weird welts on his body – at first they appear to be bug bites, but over a couple days the color, size and texture changes to look like something I have not seen.
  • Overheating – after playing outside for ten minutes, Brian overheats and has trouble cooling back down.  The same happens when he sleeps.  It appears he has difficulty maintaining his body temperature, which may explain his extreme dislike of wearing clothes.
  • Peeling of his palms and feet, leaving his fingertips and toes raw.

Perhaps some may think I am overreacting to some of the items listed above, and maybe I am.  My gut is telling me that we have missed something.  There is a bigger issue at hand and no one has been able to catch the culprit.  Maybe there is an autoimmune disease causing his poor body to react to everything and anything.  Maybe there is an immunological condition we are not aware of just yet.  Whatever the case, I want answers.  I do not want anything to be overlooked.

Day to day life is not always easy.  We cry, we argue, we laugh, we fall down, we start over a hundred different times, but we NEVER give up.  My last post talked about the struggles I have had dealing with life.  Those struggles are a day-to-day battle for me, but I have no problem placing them on the back burner when it comes to my child.  I will not stop till we have all the answers.  I want my child to live a normal life. I want to not have to worry about medical expenses.  I want to be rich so I can travel to Philly every couple of months and deal primarily with doctors I have grown to trust and respect.  I want my baby to be healthy.

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He was concentrating so hard!

While I prepare for the days ahead, I am excited to see friends and family.  I made sure to schedule the trip so I could enjoy TWO nights of prime rib at the FOP.  I cannot wait to hug my second family, my east coast support system, tomorrow night when we arrive at the FOP for dinner.  In their protective embrace, I will have a chance to breathe.  Until I wrote these words, I didn’t realize how much I need them.  I will visit with family and remember how blessed we are to have so many pulling for us.  I have not forgotten everything my family and friends have done for us, and try as I might, I’m not sure I will be able to repay them.

As much as I hate to admit it, I have lost control.  I am now along for the ride and like the song says, “Jesus, take the wheel, because I cannot do this on my own.”  I look forward to the insights this trip will bring.  The team of doctors we have at CHOP are the best and I know they will find an answer.

Now I will mentally prep for an overnight flight, multiple doctors’ appointments, a hospital stay and days spent with my sweet little man.  Through all the struggles, his smiles, kisses and hugs are all that matter in this world.

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Brian cannot eat anything at Chuck E Cheese, but he loves the games and dancing with Chuckie!

I’ll see you in the morning, Philly.