Low

Well, it happened...

I hit bottom... that point where everything becomes overwhelming and the lack of control is suffocating.  Quite frankly, I didn't think it existed. We were strong- right?  We've done this so many times before.  

It started with Ari's terrors in the hospital and the memory it burned in our minds.  Next was catheterizing him at home, which we thought would be easy.  Instead, he fought like his life depended on it.  Liv would join Larry in pinning Ari down, trying to offer her brother comforting words and the promise of a lollipop from the secret stash she keeps just for him.  I hated this for her more than anything, but we needed the help.

I was nervous about threading the catheter through the new hole in his bellybutton and actually getting it into right place in his bladder.  Compound that with the epic fight he was giving us and it was a recipe for disaster.  I repeatedly hit his bladder neck- the point where the bladder narrows into the urethra.  Ari would scream in pain yelling "You hit my booty!".  Contact with the bladder neck is unnerving- the pain shoots into the lowest part of the spine.  I even pierced the new channel once,  causing blood to back up out of his belly button. 

When Larry was at work, I had to call my girlfriends to come over and hold him down.  I am so grateful for their help, but I was sinking fast and they saw it coming.  One of my closest friends commented that she had rarely seen me cry, yet she witnessed tears multiple times during these first few days.  Over and over again, friends commented that they have never seen me down and they were concerned.  This just confirmed to me that they were witnessing my fall.

I felt like "MOM FAIL" was written across my chest like a scarlet letter for everyone to see.  I cared for Ari's colostomy, cutting holes in the tiny wafer to perfectly match 2 stomas.  I managed his spit fistula  (his esophagus pulled out the left side of his neck) with ease.  G-tube feeds were a breeze, as was reinserting a new g-tube button into his abdomen when his current one became faulty.  I continue to manage his cecostomy (the button in his intestines) and administer an hour-long flush through it daily.  I've dealt with 5 years of choking, never losing my composure.  Why couldn't I do this?

It was a Saturday morning when this realization hit me.  A friend was having an adult-only afternoon football party and Larry was getting ready to go.  He offered to come back in an hour so I could go see my friends, but I didn't want to. Red lights and sirens should have gone off.  Me not wanting to see my friends?  On a Saturday?  I couldn't leave Ari.  It was the same feeling I had when Liv was a nursing newborn.  She needed me then, just as he needs me now.  Every 1-2 hours, this child needed me to survive.  The weight of this responsibility was surprising... and sad.  

"Don't you see?!?" I yelled at Larry.  "We are not the same family we were 2 weeks ago.  Everything is different and I am failing at my only job."  "Do you want to know the craziest part of all?" I continued through my tears. "I CAN'T give up because he needs me to do this.  The more I try, the more traumatized he gets and I have to keep doing it.  I'm failing.  I'm hurting my child.  I'm done.  There's nothing more in me... Done."

So... that's what the bottom sounds like.  Not so pretty- huh?

Larry said all the right things, but the problem is, we were in the same, sinking boat.  Do you remember our rule about only one of us feeling defeated at a time?  We broke that rule and it's a recipe for disaster. 

Everyone tells us how strong we are, but the truth is, we all have a breaking point.  The true test of character is how we chose to navigate the climb back up.

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Since this point three weeks ago, catheterizations have gotten easier, which we knew would eventually happen.  It helps that Ari has been singing and dancing nonstop and that his focus on "Southern chivalry" is absolutely adorable.  Who wouldn't love their son opening a car door for them or using the term "ladies first" every chance he gets?

And then there's Liv... She is enjoying her competitive cheer team more than ever, and I admire her dedication and focus as an athlete. As I watched her do a unique series of stunts over and over again during a recent fly class, I asked why she chose to work on those stunts, in that specific order.  She told me, "We have a bunch of stunt groups do this series in our competition routine.  I'm not in a group because I'm tumbling.  In case one of the fliers gets hurt like I did last year, I want to be able to step in and prove to my coach that I can do it right away, so I'm practicing now."

Once again, I was humbled by the words of a child... this time my own.  It's time for me to look ahead and get prepared for the what-ifs in my own life.  For the past month, I've been focused on surviving each day, but now I'm moving forward...and up... thanks to the lesson my 8 year old taught me.

Care to join me on the climb?

Ari dressed as the superhero Sportacus from Lazy Town for Halloween.
It was a VERY homemade costume, But he loved it!

From Terror to Home

Ari's first night post-op was bearable, especially given the familiarity of his night-shift nurse.  She cared for him as a patient since he was an infant, so she understood his history. We had the typical issues... choking on his saliva, an occasional de-stat, and pain.  Ari is really good about asking for pain medicine when he needs it, making it easier to stay on top of his care.  He was too weak to call out for me, so I told him to knock on his bed rails when he needed me if I was laying down.  Every 20 minutes brought a faint little knock.  I would get him settled, lay back down and then hear "knock, knock, knock" again. It was actually a little comical, though we both desperately needed sleep.  He enjoyed this game, often knocking for no reason other than to have me hold his hand. The night passed with neither of us sleeping for an extended period of time, which was completely expected.

He seemed to be healing well,  though a big concern for me was that his cecostomy button was changed during the procedure to one that was the wrong size (the length of the post was too long) and wrong brand.  There was a box for the button on his bed when he came back from the PACU, which caught me by surprise. I'll spare you the details, but it took some work to get things straightened out.  Thankfully, Dr. Blumenthal, one of Ari's favorite doctors and his primary GI,was on hospital duty.  Dr. B ended up changing out the button at Ari's bedside without any stress or tears, which is a little crazy because Ari freaked out with everyone else.  He was sore, tired, and needed a break from everyone's touch and examination.

Thursday night goes down in history as Ari's worst night in the hospital... ever.  He still had not slept since waking up from his procedure on Wednesday evening.  He was exhausted and on a good amount of narcotics that should have helped him sleep.  I tried to get him down at 8 pm, and within 30 seconds of closing his eyes, he startled... jumping with so much force that his back lifted from the bed, eyes wide open in fear, and yelling in panic/pain.  His eyes closed again... 15-30 seconds the same thing happened.  This continued all night long with no reprieve whatsoever.  My heart broke... I stood over him crying, apologizing, scared.  The nurse didn't know what to do, so we tried more pain killers and even anti-anxiety medication.  Still, every 30 seconds, terror struck my child.  "It will end, Baby... sleep will come." I told him.  "When?" he answered desperately before dozing off and startling just a few seconds later, screaming in fear.

He was sleep deprived and delirious.  "Why are they here, Mommy?" He asked is a scared voice.

"Who?"

"Them." He answered, pointing to an empty space near the ceiling.

"I don't see anything." I told him, "Maybe they are your angels.  They're here to bring you comfort."

"No." He said firmly.  "They are very sad.  Their faced look like this." He made a pouty face before closing his eyes in exhaustion, and startling awake, screaming once again.

"They're getting closer..."

I scanned the room with my eyes and saw nothing.  In my ear, I hear a hiss "...heeerrrre."  I quickly turned my head, saw nothing and then shook it fervently.  I could not have have heard that... It had to be lack of sleep or the Oxygen leaking from the headwall.  I was scared and all the while Ari would fall asleep and startle again... screaming.  I watched his heart rate cycled from 90 to 190 over and over again. I prayed harder than I thought possible.  In my mind I feared the worse.  I wondered if this is what it was like when...

"Mommy, why am I floating.  I want to get back in my bed.  No... my bed is bad.  I want to go to your room.... but it's so far away.  I want to be back on the ground."

I tried to comfort him.  "You are in your bed and we're sharing a room.  I will not leave you side.  It's ok.  I'm here.  I will not let go of your hand."

He would nod in acknowledgement of my words, then the cycle would repeat.  The nurse paged the doctor twice and consulted with other nurses.  No one could figure out why this was happening.  I called Larry and told him he had to come down as soon as he gets Liv off to school.  By the time the doctor rounded in the morning, I was a mess but so grateful for sunlight.  I literally couldn't function... couldn't believe the horror that I witnessed.  His doctor thought it was bladder spasms causing pain.  I did not.  It seemed that the pain came from his body jumping, not the other way around.  We were still at a loss.

Larry arrived and Ari was wide awake.  Ari did not have a single episode of jumping in pain while alert.  I went to get coffee around 4 pm and came back into the room to see Larry standing at Ari's bedside, pure fear on his face.  Ari had tried to fall asleep and the terrors started again.  Every 15-30 seconds brought the same thing that happened the night before, it was almost too much to take.  I prayed for God to bless my child with the sleep he needs to heal and not to let this nightmare repeat, but it continued.  My parents arrived and my father took a turn in comforting Ari.  I watched the 3 most important men in my life... my father, my husband, and my son working together toward one common goal and was overcome with emotion.  My dad stood over Ari, looking into his eyes every time he woke up, and soothing him back to sleep.  I saw his tears fall onto the bed, but his method was steadfast and he didn't give up.  After about an hour, Ari finally fell asleep and didn't startle again for 20 minutes.  My dad was still standing there and comforted him once again.  Finally, my baby found peace.  It was emotional and exhausting.  The doctor came back by and was pleased to see Ari finally resting.  He talked about going home on Monday, though Sunday was an option if we could progress his to sitting and taking a few steps.

I had a hard time leaving the hospital, but desperately needed sleep myself.  I went home and was in bed by 8, emotionally drained.  I wanted the night to pass quickly so I could go back at the hospital.  As I was leaving the house on Saturday morning, Larry called and told me a partner of Ari's urologist rounded and is discharging him.  WAIT>>> WHAT?!?

Here is a child that has slept all of 8 hours out of the past 60.  He sat for 5 minutes and hasn't walked or eaten 3 meals.  The doctor said the hospital was full and there were a lot of very sick and contagious kids there.  Given Ari's compromised immune system and his relatively good health at the moment, he'd be better off healing at home.  I raced to the hospital and questioned everyone and everything, eventually agreeing to be released for no other reason than the fear of working against fate.

Saturday was busy as my parents ran all around Atlanta picking up the medical supplies and groceries we needed to come home.  Once in the house, Ari laid down on the sofa and fell asleep mid-conversation... startling only a few times, but without tears.  After a 4 hour nap, he still went to bed with me and slept for 10 hours straight.  It appears the doctors were right.  Coming home was a good idea.

As I'm typing this blog post, I hear Ari loudly singing and banging on a toy drum.  He's a little wobbly on his feet and guarded during the complicated diaper changes (2 diapers, a hole through one with a catheter pulled through, the second catheter looped in the the closure of the outer diaper) and wound care.  Pants are uncomfortable given the location of catheters and incisions, so he goes without.  What kid wouldn't like that?  Most of all he's happy and seems to have forgotten all of the pain and drama from the hospital.  I wish I had some of his strength so I can move on too, though I don't think I could ever escape from the memory of what I witnessed.

My son is my hero.

Brave

The calls from the OR continued hourly.  On the 3rd one, the nurse told me, "Based on what I can see, we have a couple of hours to go."  To me, this meant that something was not going as planned.  The "what ifs" started swirling in my head.

The final OR call advised me that they were "just about to close him up."  Again, enter the unwanted visual, this time of my son being stitched back together.  By the time the doctor came in to talk to us, 5 hours had passed. 

Both parts of the surgery were successful, though the Mitrofanoff was not able to be placed below Ari's belt line as we had discussed.  It would have been ideal to hide the stoma, but his anatomy did not allow for it, so it was created through his belly button.

Larry and I waited in his room.  How did I forget how awful this is?  He is in so much pain... it's almost unbearable to witness.

"You will get better." I told him, holding his hand.

"I know." he answered in a hoarse whisper, his eyes sad, but understanding.  He is so, so brave.

As Larry and I stood over Ari's bed, I looked up at my husband and could see the love and concern in his eyes. We were both thinking the same thing... How much more can our son endure?

"I almost passed out when they showed us his incisions." He confessed to me.

"It's okay," I replied, "I came pretty close to puking."  "I wonder what they'd do if both parents bottomed out?" 

"I don't know, but I'm glad that didn't happen."

"Yeah.. me too."

It's a typical conversation for us.  The only thing we know for sure is it's going to be a L-O-N-G night.  I had better get some rest while his pain meds are on heavy rotation. 

Ari is in surgery now...

Ari went back an hour ago, loopy on Versed. The nurses call to give updates from the OR. I may be alone in my opinion, but I don't like these calls. They are supposed to make us feel comfortable, but offer no valuable information. This past call informed me that he went to sleep well and they are beginning the procedure. In my mind, I can see my son intubated, doctor cutting into his abdomen and inserting the clamps that hold his body open. I don't want to see this... Ever... even if only in my imagination.

She said she will call again in about a hour. I know, from past experience, that if close to two hours pass without a call, something did not go as planned. I stand my ground... No calls from the start are a much better option for us.

Next, we wait for the doctor to knock on the door and tell us that the procedure went as planned or if he had to change his course due to a multitude of possible reasons, what he found, and how he adapted.

Ari was strong and confident going into this surgery, roaring his courage loudly. There is an energy to this place... Love it or not, we're part of it and Ari finds comfort in his routine here.

Speaking of finding comfort, Ari's primary surgeon Dr. Bleacher stopped by to see us. He is such an integral part of our family's journey. I felt my anxiety lessen the minute he walked through the door.

Larry and I are incredibly touched by all of the prayers and support our family has received. Social media has extended the reach of Ari's story... I love that!! He is such an inspiration... My hero.

I'll post an update once he's out of surgery. Until then, please keep Ari and his surgical team in your prayers.

Lip Gloss... surgery tomorrow

I can't believe that tomorrow is October 10th.  We've talked about it for so long, yet it arrived too fast.  The anxiety that accompanies the anticipation is gripping.  It's not constant.  Rather, it comes in waves at uninvited times.  I was grocery shopping on Sunday and realized that I only needed 2 days worth of food.  My hands tightened on the cart and nausea squeezed my stomach.  I exhaled a deep, audible breath and kept going.  I went through the mental checklist of what I needed for the hospital, slowly walking through the aisles.  We pretty much live on protein bars and coffee while we're there.  Nothing looked appealing.  As I loaded the groceries into my car, I caught a glimpse of my reflection in the window and hated what I saw.  An unattractive frown marked my face.  I lifting my head and shaking off the sadness.  "There... that's better." I told myself, making a mental note of how unappealing and intimidating that frown made me look.

I joke with my girlfriends that there is no situation that can't be made better with lipgloss and chandelier earrings and firmly believe our outward appearance affects the way people treat us. What opinions do you form about the guy sitting next to you on an airplane in gray sweatpants and an old t-shirt vs. the business person in professional attire?  It's the same thing in the hospital.  Larry and I always put care into our appearance when we are there.

So... tomorrow is the big day.  Though hard to believe, but we still have not received pre-op instructions.  Ari's cecostomy makes pre-op preparation unique and we will have to flush his bowels at home.  It would be nice to know when they want me to do it (I usually do it in the morning) and when he has to switch to clears only.  I'm hoping we find this out sooner rather than later today.

(**Update** The procedure is scheduled for 11:45 a.m.)

A lot of people have asked me what Ari is having done.  Without going into too much medical detail, the purpose of this surgery is two-fold.  First, to repair his left ureter which is refluxing urine to his left kidney and second to create a Mitrofanoff, which is a urinary diversion.  To create the Mitrafanoff, a section of his intestinal track will be removed and shaped into a narrow tube.  One end will be inserted into the bladder and the other end out will be made into a stoma through his lower abdominal wall.  Once healed, we will be able to cath his urine through the stoma.  Pretty cool, huh?  I'll write about best and worst case scenerios once he's through the procedure, which should take 4 hours or so.

Today is going to be emotionally tough as we think about the "what ifs..." that inevitably cross our minds.   My goal is keep the family distracted and happy while mentally preparing for tomorrow.

I'd better go get my lipgloss...

D-R-A-M-A

The past month has been absolutely crazy.  Our highlight, by far, was a family vacation planned over  Labor Day weekend to Rosemary Beach, FL. As we approached trip time, Hurricane Isaac was creating havoc in The Gulf, threatening to cancel our plans.  Focused on the weather, we were caught off guard when a much larger obstacle came into play. The Friday before we were supposed to leave, Ari aspirated on saliva in his sleep.

He didn't have an esophagus for the first 16 months of his life and the one he has does not work very well, so it's no surprise that he does not instinctively swallow while sleeping.  Think of it this way... Remember that feeling of bringing your new baby home and listening to the monitor for his breath, checking on him every time he makes a noise or goes a period of time without making any sounds in his sleep?  Now imagine that feeling never goes away and almost 5 years later you're still listening to the monitor and running in to check every time something does not sound right. That's us... every single night.

It was morning when Ari choked.  I had just gotten Liv out the door for school and sat down to have a cup of coffee when I heard it.  Ari was coughing, gagging, sputtering.  I jumped out of my chair and took the stairs 2 at a time, making it to his room in seconds.  I reached for him and pulled him upright in one swift movement, but I was too late.  I held his chest against mine and he cried, startled to be awoken so abruptly.  I could feel his chest rattling against me.  X-rays that afternoon confirmed the aspiration and by Monday we were visiting his pulmonologist, praying is had not turned into pneumonia.  We started an aggressive cocktail of steroids and treatments.  By Wednesday, his symptoms worsened and we increased the amount and duration of his medications.  Larry and I had a big decision to make regarding the trip, which was already paid for.  The hurricane had turned North and this was our last chance at a family vacation before Ari's next big surgery.  We decided to go and I am so glad that we did.  24 hours in the humid, salt air and Ari was breathing better than we have seen him in years.  The cough literally disappeared overnight.   Here are a couple of pictures from our trip.  I love the happy faces!

 As soon as we got back, the reality of Ari's next surgery was waiting for us.  I had valid concerns over whether or not his main surgeons and specialists were all communicating over anatomical abnormalities that could affect his pre and post-op care.  I spent a good amount of time on the phone with each doctor making sure all of the details were covered.  These conversations gave me the reassurance I needed, enabling me to exhale a bit.  That is, until 303 started calling (for those of you who missed this post, look for F-you 303 in my blog history) and the real countdown began.

In addition the the stress and dread-filled anticipation that comes with another major surgery, we've had our share of drama lately. Nothing good comes out of drama... ever.

Last Sunday, Larry and I took the kids and two of Liv's friends to a festival at a local park.  It was a perfect day and before we left to go home, Larry took the girls to look at the dogs up for adoption one last time while Ari and I went to the playground.  I stood 2 feet from the entrance of the play structure, watching him closely as he climbed in.  "I'll be right here!" I told him, as he disappeared into a tunnel, a huge smile on his face.  After a few minutes passed and I didn't see him come back around, I started looking for him, playfully calling his name.

I didn't see him and panic started to rise throughout my body.  Anyone who has lost a child in a store, even for a few seconds, knows this feeling.  He had to be there, I saw him climb in just a few minutes earlier.  My search became more frantic and my voice louder.  I stepped back and checked out the other areas on the large playground, now yelling for him... my voice cracking with emotion.

At this point, I was completely engulfed in panic.  I ran around to the other parents, telling them that my child was missing.  I  refused to leave the playground.  If someone kidnapped him, he would escape and know to come back to this spot.  Kidnapped... it was all I could think about.  There were at least 1000 people there. Someone called the police.  Describing Ari to the  dispatcher on the phone... his blue eyes, his Superman Shirt, his scars...  it drove home that fact that this was real.  I was crawling out of my skin.   "This can't be happening.  Not Ari." I told myself... but it was.   I felt like I was going to get sick... overcome with indescribable sorrow with each minute that passed.

Larry and the girls returned and joined the search.  Back-up police officers were called in.  I still could not leave the playground.  After the worst 45 minutes of my entire life, I saw Larry running down the hill with Ari tightly gripped in his arms, crying and looking scared and confused.  The relief that swept over me is beyond words.  I grabbed him out of Larry's arms, held him tight and sobbed, unaware of anything except the feeling of my child in my arms.

The policeman was there, "Is he okay, Ma'am?" he asked.  I did a quick look over and said yes.  "Are you ok?" he asked, lightly touching my arm.  I looked up at him and slowly shook my head.  "No.  I'm not." I answered.  It was the truth.

It turns out Ari went down a tunnel slide on the other side of the play structure.  He got disoriented and thought it was where I was standing and that I had left him.  He said he yelled for me, but I didn't hear him, so he went up the hill and into the crowded festival to find Larry.  Once in the festival, he got lost and eventually a woman found him crying.  She went to the band and had them announce that they had a lost child. Larry heard it and ran to get him, along with another mother from the playground that left her own family to venture into the crowd to look for him.  "I'm his father!" Larry yelled, and they were reunited.  I am so grateful for the kindness of these good samaritans and wish I knew who they were so I could personally thank them again.   I an also grateful that Ari knows his first and last name, how to spell both, and my cell number.  This helped!

I have not gotten over the fact that he thought I would leave him or the feeling of him being missing. The truth is, Ari would not survive long under someone else's care and the reality of this is overwhelming. Other than Larry and I, my parents and Ari's nurse, there is no one else that understands the complexity of his medial needs in his day to day life.

But wait!  There's more!

This past Sunday evening, after a fun day of apple picking with friends, Ari got food stuck in his esophagus... again.  We went to ER after a couple hours of unsuccessful attempts to dislodge it.  We would normally wait a little longer, but it was bed time and we couldn't put him down knowing it in stuck due to the risk of aspiration, which we've already covered in this post.

He was admitted to a room overnight and went into the OR at 8:30 Monday morning to remove the impaction.  Despite being intubated on a ventilator for the procedure, we were home in time to pick up Liv in the carpool line. Ari thought the whole visit was great.  He loves the hospital there a little too much.  I, on the other hand, was not as thrilled.  It was a precursor of what's to come next week.

He looks WAY too happy to be in the hospital!

October 10 is the big day... next Wednesday.  There has been so much anticipation in our house about it.  I have no idea how we're going to manage a 5-10 day hospital stay and help Liv keep up with her homework and practice schedule.  Thank God my parents are here and we have a strong support network of friends.

Ari has talked about this surgery for longer than 303 has been calling.  He walks around with a blood pressure cuff on and explains to everyone he sees about his needles and noodles (IVs and medications).   His bag has been packed for weeks and includes every DVD he owns- all out of their cases.  He takes them out daily, lays them out in intricate patterns, explains to me which ones he's going to watch in the hospital on each day, and carefully places them back in his bag... over and over again.  Even if we wanted to put it out of minds, we couldn't.  I know this is his way of dealing with anxiety, but it's heartbreaking.

During Ari's hospital stay, I will try to update the blog frequently.  Most updates will come through my Blogger iPhone app, so I apologize in advance for any spelling or grammatical error.

Today is his pre-op appointment where we'll cover all remaining details and pre-op instructions.  Deep breath...  Thank you all of of the love, support and prayers.  As I've said before- it really does make a difference!

I'll leave you with a little inspirational singing that's bound to make you smile.  You can't see Ari, but you can definitely hear him!!
Ari singing "This Little Light of Mine"

Anniversary

I've spent a lot of time reflecting on marriage lately, particularly because last week, Larry and I celebrated our 13th anniversary.  Ahhh... lucky number 13.  I think it's fair to say our biggest challenge has been the inability to truly absorb everything that has happened over the past 4 and a half year.  No one starts off their "happily ever after" talking about how they will cope and survive the challenges of a special needs child.  The sleepless nights, diapers and constant monitoring were supposed to be over by now.  This is the point where things should be easier and we should reconnect and enjoy relaxing evenings together.  We are so far from this freedom.  In fact, with Ari's next major surgery rapidly approaching (October 10th), his care and the "what-ifs" consumes our thoughts and conversation.

We have not done much to acknowledge our anniversary over the last few years.  We always talked about our tenth... We were going to go back to Europe, get a new ring, have a big party.  Instead, we spent our tenth anniversary in the pediatric intensive care unit, attempting to stretch Ari's esophagus in hopes of a connection.  All we could think about was whether he would survive the extended period of intubation and chemical paralytics.  Would he have an esophagus?  Would it work? Would he ever speak again? Would he get an infection?  Will he make it through?  It was the day he had an IV infiltration.  A vein carrying strong medication from an entry site in his foot burst in his shin.  It went unnoticed for a while, until the surrounding tissue has burned away, from the inside out, creating a crater the size of a half dollar.  A child on paralytics can still feel, they just can't do anything about it. He endured that pain, unable to move.  Even if he were to awaken and try, he was tied down.  I remember seeing a tear leak out of his eye which was unable to open.  The doctor was called, it was an emergency, and I was helpless.  The scar is still there and every time I see it, I remember that moment, that it was our anniversary, and the emotions of that time in our lives.

We decided to go out again this year.  We really needed the time to talk about something... scratch that... ANYTHING other than the upcoming surgery, so we made reservations at one of our favorite restaurants, my parents generously taking the kids on a Tuesday night.  The dining room is intimate there and they have a "no children allowed" policy.  It's the perfect place to have a leisurely and romantic anniversary dinner.  Larry left his phone in the car and I turned my ringer down.  For two hours, I wanted it to just be about us.  Dinner was perfect- good wine, good food, and great conversation.  As we sat and talked, enjoying the last of the wine, the hostess approached our table holding a cordless phone.  "Excuse me ma'am." She said. "You have a phone call."  She held out the phone to me and my eyes met Larry's.  "I bet his button came out." I said to him, reaching for the phone.  "I don't know..." He replied.  "I bet he has food stuck."  Larry's eyes were glued to my face, waiting for a reaction.  It was my mother and she had been trying to reach us, but neither one of us answered our phones.  Her last resort was calling the restaurant, a scene right out of a '90's sitcom.

"Ari hit his head on the nightstand and we think he needs a few stitches." She said.

Relief swept over me.  "He just cracked his head and needs stitches." I repeated for Larry, who also looked relieved.  To us, this was nothing.  I could handle an injury like this any day.  We rushed out of the restaurant and I dropped Larry off at home on the way to my parents.  He had an early flight the next morning and we knew it would be late before we got home.  Saying a quick goodbye and shaking our heads over the irony of the incident happening that night, I got back in the car and went to get Ari.  His history is too complicated to go to any hospital other than CHOA, so off we went... me still dressed up and Ari in his Mario Bros. pajamas.  Here's a picture of Ari chilling in the waiting room.  We both wear masks in the ER.  I believe it's not fair me for me to ask him to wear one if I don't do it, too.

As soon as the doctor put on rubber gloves, Ari's eyes filled will fear and his frown conformed to his signature "brave face".  It doesn't matter how much, or little, is being done... the gloves are his sign that he's about to be messed with, poked, stuck, or pinned down.  One little touch and he almost jumped off the table.  The doctor decided to give him Versed, his typical pre-op "happy meds".  Two stitches and we were done and home by two a.m.  The Versed still had him wired, slurring his words, and disoriented.  I hated seeing him like this.  Like all other nights when we are concerned for his well being, I climbed into his bed and snuggled, prepared to wake up and adjust him with each cough and gag.   By the time we got up the next morning, Larry was already on a plane.

And just like that, our life was back to normal.  We reflected on the night with humor and understanding.  Who knows... maybe this will actually be a great year... the year Ari gets over the big challenges and we adjust to our our new normal.  I need something to believe in, and for me, right now, this is it.  Lucky number 13 it is.

I can't end the post without sharing some pictures we recently had taken.  It was impromptu... we didn't plan on it, didn't dress for and I certainly didn't intent on on being in any of them.  Ari and I were shopping in a baby store and the in-store photographer offered to take some pictures and email them to me for free.  I am usually too cynical to do anything like this, but for some reason I said yes.  Here they are...

Oh Yeah!

I've enjoyed reflecting on our recent trip to Orlando, planned two days before we departed. Two moms, five kids, and no agenda. To some, this would be more of a nightmare than a vacation, but to us, it was perfect. We didn't tell the kids anything about our plans for the day. Their anticipation never turned into disappointment and there was not one single fight or tension-filled moment.  Even the car ride was a blast.

We allowed the kids to sleep in, starting each day around 10 a.m. and arriving at the parks after lunch. I am sure this is causing some Disney Purists to cringe, but it worked for us.  I had to do Ari's intestinal flush every morning, which, start to finish, takes over an hour.  Once he's done, we are usually clear of any accidents for the next 24-48 hours.

As we arrived at the park, I tried to stifle my fear of the worst case scenario.  One of Ari's more memorable ambulance rides was from Universal Studios in Orlando when he was two years old.  Hindsight, it was not the best vacation idea, as he was only five months post-op from his major esophageal connection, but we felt we could handle it.  The medics were afraid of him, not willing to do anything except keep him stable, deferring all treatment and liability to the local Children's Hospital. I clearly recall the hospital's inability to care for him and signing the waivers to get him discharged against doctor's orders.  It was Thanksgiving Day and my clothes were still soaking wet from a water ride the day before. We drove straight back to CHOA, our hospital in Atlanta. It turned our Ari had his first bladder infection, which by then had backed up into his kidneys.  It was also the first time we realized that illness of any kind affects his esophagus, as he was unable to swallow the entire time we were there.  What were we thinking?!? Thank God he still had a G-tube and we were able to keep him nourished and hydrated. 

I was afraid that Ari's stamina would not hold up during this trip, that he would choke, get dehydrated, that his "button" in his intestines would come out... that we would end up back in the hospital that was unable to care for him.  Day one, ride one, Ari freaked out in line, which was completely uncharacteristic for him.  Allowing my friend to take Liv, I went outside with Ari who was crying hysterically.  Calmly trying to assess the situation, I identified the source of his distress- a very full, very messy diaper.  Since he was flushed hours before, I knew this was not a normal bowel movement.  Ari's intestines had "dumped" the entire content of his lunch, eaten just 30 minutes prior.

Gastric dumping occurs when food bypasses the stomach too rapidly, causing painful cramping, dizziness, and nausea.  It's been happening more and more frequently and we're not sure why or what causes it, though there seems to be a link between activity level and his ability to digest his food.  You do see the irony here- right?  He finally gets neurosurgery clearance to be active and his intestines are not about to let that happen.  I cleaned him up, but the incident left him fatigued and, for lack of a better word, sad.  Quite frankly, I was a little sad, too.  I tried to regain the same levity we had when we arrived, but it was hard... I was afraid it would happen again.  Some ice cream and a visit to Seuss Landing was just want we all needed and the rest of the trip was, thankfully, incident free.

We left with so many great memories, but by far the moment I will never forget was riding Ari's favorite roller coaster, Woody Woodpecker at Universal Studios.  We rode it over and over again, with Ari yelling "Oh Yeah!" the entire time.  He seemed so carefree and happy. As we repeatedly got off of the ride and back in line, he was skipping, smiling and excited from the thrill.  The lump in my throat was so large I could barely swallow past it. As we rode it for the final time that evening, I gave into the tears burning my eyes, smiled down at Ari and joined him with an enthusiastic "OH YEAH!"

Lessons from a child

Three days after the good news from the Neurosurgery appointment, Ari got food stuck in his esophagus. We were at a friend's house with a few other families and the kids were sitting at a table together, eating and talking.

A few minutes after they sat down, I looked over and saw the dreadful  telltale body language.  "Ari, Do you have food stuck?" I asked, walking over to him.  I hate the way I sound asking this-  I almost sing it to him, the way a mother would talk to a toddler.  He lied to me and said no, but I knew the truth.

I followed him to the front yard, away from the crowd.  He gagged and retched, attempting to work the food out on his own, the effort rocking his entire little body.  Encouraging him to continue trying, he found a way to once again ground me with his words.
"I don't want to get the food out... it's too hard and it hurts." He said.  "I need to go to my hospital and they will put a needle in my arm and put me to sleep and Dr. B will get the food out in surgery.  Then we will go to a room and I will have a Popsicle.  Let's go right now so I can go home and get my DVDs first. Lots of them... cause I'm gonna spend the night there.  Just call my hospital, Mom."  I must have been shaking my head in disbelief because he added firmly, "Just do it, Mom." 
This child never ceases to amaze me.  I tried to reason with him, but he refused to try to get the food up anymore.  The longer it's stuck, the higher the aspiration risk... I was getting worried.  Eventually his friend came out and I told him he might not want to see Ari try to throw up.  "It's ok." He said, walking toward us. "Ari's one of my best friends and I want him to play baseball with me.  I'll help him so he can play."  And he did.  He encouraged Ari to drink, which "floods" the food and causes him to regurgitate it back up.  I'll admit it... it's hard to watch, but his friend stayed by his side, getting him more water and cheering him on the whole time until Ari was well enough to play.  At only 5 years old, he managed to teach me a lesson in compassion, friendship, and loyalty.  Larry joined the boys in the baseball game and played until they tired out as I joined my friends in the pool.

I was lost in thought, reflecting on a comment this little boy's father recently made to me about being an inspiration to his family for how we deal with all of the decisions and challenges in our lives.  I remember thinking he was putting me a pedestal I didn't deserve to be on.  Wouldn't most of us step up the same way Larry and I did if faced with a similar situation?  Yet, his five year old son chose to step up and be compassionate with genuine sincerity.  I was completely blown away at not just the child's actions, but the moral foundation laid by his parents.

And speaking of his parents... his fabulous mama invited me and the kids to join her for a 4 day trip to Orlando this week.  Of course I said yes!  Suzanne, me, and our combined total of 5 kids are heading out at 5 a.m. tomorrow and I am so excited!  Last minute plans are often the most fun.

And speaking of fun... I have to admit we've had a fabulous July so far.  I taught some of the neighborhood kids the art of cake decorating (ha!!), though they preferred to see who's cake had the most icing and Liv and Ari got to be in the new MattyB video for the song One Thing!  It was supposed to be just Liv, but Ari was having so much fun, they let him do it, too. Click HERE to watch the video.  I promise, they told her to look angry!  It's trending on YouTube right now and has had over 600K hits in the first 3 days.  His last video for Titanium is still getting a lot of hits as well.  Click  HERE to watch a behind the scenes Vblog about his inspiration for the song which includes Ari and Ryan Walker, the son of some of our college friends who has one of his mom's kidneys.
And finally, Liv turns 8 this week.  Her cheer gym, ATA, did a phenomenal job of throwing what she calls "the best party ever". Both Liv and Ari did some stunting with Coach Reed and Liv won the tumbling contest with a solid Round-off backtuck.

I make Liv any cake she wants for her birthday every year.  Pinterest really made me step it up this year.  I can't imagine what next year with bring!

I have one more picture to add, just because I find it hilalrious.  Ari loves to play in his room instead of going to sleep.  I went in to check on him last week and this is what I saw.  The hat he's wearing says COLLEGE.  I love the giant Cars slippers, too.

 

BIG NEWS

It's not just BIG news, it's BIGGER than BIG news and quite possibly the turning point and moment of clarity we've been seeking.

Larry and I both went to the Neurosurgery appointment yesterday, anxiously awaiting the results from last week's MRI of Ari's lower spine.  Ari's Neurosurgeon has been involved in his care since birth and I have the same fondness and trust for him as I do for his Primary Surgeon and GI.  So, when his nurse practitioner came in and told us he would see us as soon as he's done reviewing the radiology report, our anxiety grew with every passing minute.  "What's taking so long?" we asked each other.

He walked into the room, asking some general questions about Ari's current condition.  When I transitioned the conversation to the MRI results, a huge smile spread across his face.  "Ari looks... perfect." He said with confidence, gazing over at Ari who was using the arm rests of the chair like gymnastic parrallel bars, lifting his body up, legs out in front of him in a pike position, flashing a goofy smile.  He was obviously proud of his accomplishment, but had no idea of the significance of the moment.  Laughing, the doctor repeated himself, shaking him head at Ari's antics.   "Absolutely perfect... the fluid filled mass and extra fatty tissue that I removed when he was an infant has not grown back and his spinal cord seems to be growing without any re-tethering."

Larry and were both thrilled and shocked at the same time.  We were prepared for the worst, but not best... an interesting realization.  "What about the difference in shoe size?" we asked.  "It's a result of his birth defects, but not indicative of any further problems.  It's just Ari."  He replied. 

His explanation made me smile, remembering Ari's answer every time we ask him what he wants to be when he grows up.  "Just Ari." Is always his reply.

Next, I asked a question I knew the answer to, just for clarity.  "What about sports?"  Dr. Brahma's answer was not what we expected.

He looked at Ari and requested that he walk across the room, which Ari did with swagger.  He hopped on one foot, then the other. Laughing once again, the doctor said something I will remember the rest of my life.

"Ari can do anything and play any sport.  He's not fragile.  Baseball, soccer, golf, tennis... even football.  Keep an eye on the smaller foot and make sure it doesn't start to curl up and I'll see you in a year."

Wow.  WOW!!  I looked at Larry and could see he was swallowing past the lump in his throat. 

Happy... proud... relieved.

We walked out in disbelief.  It so much more then we ever expected. With tears of joy in both of our eyes, we silently celebrated this monumental turn in our journey.

Airbrushed swagger- LOL!

Drama in Day Surgery

Ari's health is the best it's ever been, so I decided to take a month off from writing and focus on summer activities with the kids.  This is the first time I've been home with them during summer break and we are all excited to have fun!
For the most part, it's been great.  We've played games, gone swimming, jumped on the trampoline, had playdates and enjoyed lots of out-of-town visitors.  The house has been buzzing with activity.
Check out Liv's crazy, mid-flip toe touch.  Larry had to work hard to send her flying high enough to do this!

**Priceless Photo Moment**

 A picture with BOTH sets of grandparents. Those are some happy kids!

Everything was great until a few weeks ago.  The change came in the form of a phone call.  As soon as  I saw the number come through, anxiety gripped my chest.  It's a 303 area code, I know it well and hate it from deep inside my body.  It's a call center in Colorado to remind me in its cheery, robotic voice that my child has a procedure at Children's Healthcare of Atlanta and to complete the online, pre-anesthesia paperwork.  From this point on, I will receive this same recording every single day until some sort of action is taken to make it stop.

Well, you know what I have to say that? "Fuck you, 303.", referring to the call by it's unofficial nickname in our house.  I know... I've never sworn in my blog before, but 303 deserves it!  It's a mood killer, an anxiety creator, and a beacon of doom.

"I got the call today."  I told Larry at dinner.
"303? Already?"  He asked, "I hate that call." 

"Me too."  I agree, narrowing my eyes and silently noting that the air felt a little thicker, making harder to breathe.
After a few days of receiving the calls,  I reached out to the Anesthesia Department.  Just like all of the other times, I explain that all of our paperwork is on file and any changes in Ari's health will have to be discussed the day of the procedure due to the inconsistencies of his health.  The calls stop, but the countdown checklist begins, with calls the week and day prior the procedure. We get all of the instructions, including when to arrive, when he can last have food and when he can last have clear liquids. His procedure was not until 12:45 p.m.  I made a mental note that he's going to be hungry.  As if on cue, mid-morning on procedure day  he stood in the middle of the family room, sobbing that he just wanted some water.  I felt so bad for him and did not allow myself to eat or drink either, hoping the self deprivation would reduce the guilt.

His mood lifted when we arrived for the MRI on Wednesday.  Ari is well known in Day Surgery and enjoys the high-fives and hugs he receives each time.  Once in a pre-op room,  I get him into a gown and answer the same questions that are asked before each surgery... changes in meds (no), diet (no), home life (no), blood transfusions (yes), MRSA (yes), last time he ate or drank, etc...
"What are you having done today?"  The nurse asked.  "MRI of the sacral area of the spine." I answer.
"AND..."she said, dragging out the word.  "There's no and." I replied.

"Dr. Smith...??" She continued to prod. "We're not seeing him today." I replied confidently.  "Mitrofanoff...???" She asked, raising her voice in the one word question.
"Wha... NO!!... Wait... NO!... NO!"  This is a no cutting day- I promised Ari.  The Mitrofanoff is a 4+ hour surgery, wide open abdomen, major cutting, life changing, 10-12 day hospital stay, 12 week recovery.  NO, NO, NO, NO, NO.

But there it was... on their schedule for today.  They cleared an OR for the entire day, plus surgeons, anaesthesiologist, and OR staff.  A room was waiting for us on the in-patient  floor and everything was all-clear with insurance.  Everyone knew about this except for us.
"Hurry up!" I text Larry who was already on his way to the hospital.  "They want to do the Mitrofanoff!!?"
"What?... NO!!!!!" Was his response.  He's right... I should listen to him.  I should regain my composure.  "NO." I repeated in my head as I looked around at the confused faces in the room.  "Please page Dr. Smith." I requested.  It had already been done.
Was I about to turn my back on fate?  Was it meant to be this day? We were in room 44 and 4 IS my lucky number. Everyone is prepared... everyone but us.

"There is no fate in surgery, Jodi." Larry reasoned with me. "He's not prepared and we're definitely not prepared." "Plus... he's not even cleared by neurosurgery for it yet."
He's right... that's why we're here- to check and see if Ari's spinal cord is re-tethered and if he needs it to be released.

How does a  mistake like this happen? The doctor wasn't happy and neither were we.  I thought hard... During our last urology visit, he wrote the orders for the surgery, knowing we needed to do the sacral MRI and meet with neurosurgery before proceeding.  It was supposed to stay in Ari's file until we were ready to schedule it and then the paperwork would already be cleared.  "My scheduler said she spoke to you in April." he stated.
After a brief moment of self doubt, my mind cleared.  Of course we didn't talk.  A parent doesn't forget scheduling a major surgery, especially THIS parent, when one's child is not even cleared for the procedure.  His scheduler was lying and I was anxious to call her once Ari was taken back, but not until after I found out if neurosurgery had coordinated the MRI to be on the same day.  It was too ironic that the procedures were on the same day.

Looped up on "happy meds", Ari gave us one last ROAR and was wheeled into to pre-op.  As soon as he left, I started making calls.  Neurosurgery did not coordinate with Urology. It was a random twist of fate that they happened to be scheduled on the same day. Once that was clear, I contacted the Urology scheduler who admitted she had no documentation of speaking to me and was surprised that I received no pre-op paperwork or test requirements from them. "Well, I'm sure the hospital called you." she said in a last effort to clear her mistake. The 303 calls flashed through my head and I answered "Yes, they did. They said my child has a procedure. The hospital never discloses what the procedure is on the phone."

Game point.  Unfortunately, Dr Smith was the one who lost, not his staff... a sad realization. 

Thankfully, the MRI went as planned (it was about two hours long) and soon Ari was brought back from recovery, requesting a slushy. 
Ari was excited to have his Daddy hold his hand when the IV was pulled.  I actually caught the moment on my phone.  He's still so small.

This brings us to tomorrow, when we will meet with Neurosurgery to find out the results of the MRI.  This appointment will map out Ari's (planned) surgeries for next 6 months.  We have some big decisions to make and will be praying for the strength and clarity to do the right thing. I'll update the blog once we know what's next.

Until then, I have a favor to ask... if you have not registered to receive automatic updates when I update the blog, please do so.  The book agents I spoke to loved the story and the writing, but suggested I increase the amount of followers and blog views. I'll do my part, which is more frequent updates to keep it interesting.

I really appreciate your help and support... please pass it on and encourage your friends to sign up as well. THANK YOU!!!

XOXOX Jodi

Jealousy

I owe you an apology.

Larry said my last post was sad and emphasized our challenges, not our celebrations.  He has a point and it was well received, so I'm sorry.

Over the past few weeks, I stepped away from writing and work to focus on embracing our normal, the one I keep talking about, yet never describe.  The problem is, I didn't know what do or where to start.  I began organizing everything in the house, which Larry will tell you, is quite different than cleaning everything in the house.  On any given day, the contents of every kitchen cabinet were moved, closets were cleaned and furniture rearranged.  I've been volunteering in Liv's class, the beds are made, the laundry is done, and dinner is waiting on the table every evening when Larry gets home from work.

I. Am. Unstoppable.

...And insatiable.  None of these activities have thoroughly filled the void left by juggling life, work, marriage, kids, and Ari's medical challenges for so long.

Why can't I just relax and enjoy this time?  I'm trying... I really am.  A fun 4 day weekend in Sandestin, FL with 30 girlfriends helped, as did this past weekend, where we celebrated Larry's birthday with a group of close friends.  I even sat in a lounge chair on the driveway for a hour yesterday, soaking in the afternoon sun and watching the kids play.  The guilt that I should be doing something else is slowly being ebbed out by the knowledge that I have an opportunity to enjoy my family.  I'm making progress indeed. 

From a health perspective, Ari is doing really well.  He hasn't choked at all since his last emergency procedure.  I wonder how much of it has to do with me watching every single bite he takes, constantly reminding him to chew, swallow and drink.  Maybe he's just growing up...  I stare at him in awe of how he's now a young boy, no longer a toddler.   I try to remember his milestones, but I can't.  I don't know when he rolled over, crawled, walked, or what his first words were.  The realization makes me feel a sadness deep in the pit of my stomach.

My thoughts switch to Liv.  I remember everything- from the moment she was born to her first step... even the cute little songs she performed in preschool.  Why is it so different?

Liv recently broke her foot and is in a boot for the third time this year.  I can't help but wonder if this would be a bigger deal to us if our perspective was not so screwed up.  A broken bone is low on our radar, yet should be relatively important.  She's not phased by it at all and even managed to win the limbo and hula hoop contest at school today.  That's my girl... always strong, always competitive.

Her school work in another story altogether.  If I was not as distracted by Ari's medical issues, could I have provided her with a stronger academic foundation?  The answer is most definitely yes.  So not only am I playing catch up as a domestic goddess, I'm also trying to make up for lost time with both kids, in all aspects of their lives.

At this point, my biggest challenge is, quite frankly, myself.  Now that I have more time on my hands, my thoughts are spinning.  I keep thinking and over-thinking, begrudgingly allowing guilt, sadness, and anger to creep in.  "GO AWAY!!" I want to yell, but that would be like telling one's reflection to stop looking back at you in a mirror.  It's time to deal with it, and last night was an unexpected revelation of the true cause for some of these feelings.

It was a happy occasion... a bris and baby naming for the second son of family friends whom I've know my entire life.  My OBGYN was the mohel.  "You look good"  he said before asking me about Ari.  He used to say that to me in the same tone of voice at each prenatal check-up.  He's the doctor that admitted me to the high risk floor when pregnant with Ari and the one who delivered Liv... again, something I remember clearly.

As the doctor prepared for the bris, I couldn't take my eyes off the baby.  My mind was racing and I didn't like the direction it was heading.  A lump formed in my throat and it was all I could do to stand there, bracing myself on the back of the sofa.  I was so jealous of my friends, close enough to be family.  I didn't get to hold my baby.  I didn't get to bring him home.  I didn't get to have a bris... or a baby naming, I don't even remember what he looked like at 8 days old.  I didn't know how he smelled how he felt snuggled in my arms or what his cries meant.  He has no cries... he was on a ventilator.  He would look like he was crying, but no sound could come out, the tube in his mouth suctioning his saliva from the pouch that should have been his esophagus vibrating and clogging, causing him to choke and stop breathing.

"No... not here", I begged myself.  "Now is not the time for this."  "SELFISH!! This is not about me, this is not about me, this is not about me."  I eyed the door, wishing I could run.  I may have slipped out politely had I not arrived with my parents.  I wanted to give in to the welling emotions.

"Can you watch?" another family friend asked, referring to the circumcision about to happen and oblivious to the internal battle I was fighting.  "Yes" was all I could muster, and I didn't take my eyes off the doctor as he clamped, cut and dressed him.  The baby was handed back to his parents and he received all of the snuggles he needed to forget the brief trauma.  Again, my head was swirling with thoughts and emotions.  I didn't get to hold Ari at all as a baby, we never bonded the way mothers and newborns are supposed to.  Even when we brought him home, he stiffened at my attempts to cuddle.  During his brief experience in life, touch meant procedures, surgeries... pain.  It took a long time for him to want to be touched or held.

I long to have another baby so I can have a chance to experience the pregnancy and newborn stage again, but it's never going to happen.  When things were really difficult with Ari, we knew our marriage and sanity would not have survived a third child, so Larry had a vasectomy.  Short of paying an extensive amount to have it reversed, we're done.  The realization is a sad one.  We talked about it last night and Larry shares the same feelings and regret, but what's done is done.

I was grateful my parents were there, but did not want to broach the subject with too much weight  for fear of an emotional collapse. In the car on the way back, I casually touched on my feelings. "Well, " my mom said, "Shit happens and it happened to Ari." I love, love love that woman. She knew where I was headed and provided the necessary detour. "Yes it did." I said laughing out loud and catching a glimpse of my dad in the rear view mirror, tears welled up in his eyes, mixed with surprise at her response. Yes... they knew.  I imagine a conversation took place once we were no longer together.  The ride back was peaceful as we all reflected on the sanctity of lifelong friends.

Maybe this time off is therapy for the whole family.  It's allowing us to identify our emotions and challenge ourselves to get past them. Our whole family seems closer and we're sharing more laughs than sorrows.  Even when Ari flushed an inflated balloon down the toilet on Saturday, I was laughing (on the inside!) and grateful was for this opportunity to face my reflection head on... and accept it.

Here We Go Again...

Silly me... I actually believed that Ari's most recent esophageal surgery and subsequent esophagram that showed how water helped him swallow would have "fixed" his problem with food impactions.  Why would I allow myself to go down this path of naive hope?

Food started to get stuck around mid-March.  At first the episodes were spaced out, but the frequency slowly increased.  We wrote it off as not chewing well or not drinking enough and continued to spend entire meals saying "Small bites!" "Chew better!" "DRINK!".

Reality settled in for Larry and I and we knew this pattern was going to continue.  Looking ahead, we once again wondered how we would manage meals, school, and countless doctor appointments.  "Next year will be better... we'll be over this hump... he'll be older..."  These are all words we've said before.  Knowing about the pending bladder and possible spinal cord surgery, we made a life changing decision for our family.  I resigned from work.

Now, it may surprise some of you to learn that I worked full time, returning out of necessity just 5 days after Ari was home from the NICU.  For those that know me well, the surprise lies in the fact that I am able to step away from a professional career.  Working from home in a sales job (I left management when pregnant with Ari), I found ways to balance appointments, surgeries, and emergencies while still keeping up with my job responsibilities.

I made two major mistakes in my career within 18 months of each other.  First, I left the Fortune 500 company where I was respected and successful and they supported my family situation.  I believed that leaving would allow me to escape the stigma of being the mom of a child with special needs.  They saw me go through so much and I wanted a fresh start.  As I reflect on the situation, it was more of an escape that new venture, but I didn't know it at the time.  I'm embarrassed that I felt this way, because now that "stigma" is my badge of honor and I wear it with pride.

A few months into the new job, Ari required 2 procedures a week for 12 weeks to try to surgically "stent" his esophagus and my company's reaction was less than supportive.  They added geography to my territory and increased my travel to 3-5 days a week, even requiring me to miss his third birthday.  I begged them to allow me to go to this training session late.  Their answer?  "He's young... lie to him about the date.  He'll never know."  I was heartbroken...  I went to the training, winning first place honors for both sales and presentation skills and resigned soon after.

Mistake number two was selling myself short.  Feeling defeated from the last experience, I decided to take the easy route... maybe I could no longer handle a high-level job and my family situation?  I accepted a position that was significantly below my skill and pay level.  This was a really, REALLY  bad idea...  After voluntarily going part-time to better manage Ari's appointments and recent surgery, I decided it was best to resign and focus on the family. 

To celebrate my new stay-at-home status, I took the kids (plus one of Liv's friends) to the gulf coast for Spring Break.  Larry had to stay behind to work.  While there, Ari had 3 major choking episodes.  One was so bad, it caused panic to set in... I was the only adult with 3 kids and the local hospital would not be able to handle his needs.  I searched the Internet on my phone for the closest major pediatric hospital and contacted friends vacationing along 30-A to see if they could take the girls.  Thankfully, he eventually got the food out on his own.  At another point, I had the leave the girls alone in a restaurant while I took him outside to regurgitate a food impaction.  I kept running to the window to look in at them and then to Ari's aid, feeling overwhelmed and helpless.

We got home on a Thursday and by that Saturday, Ari had food stuck to the point where he couldn't swallow his saliva for 8 hours.  I arrived at the ER on Saturday night and they were expecting us.  Ari was prepped for surgery and we were swiftly taken to surgical pre-op where he waited for a midnight procedure.

When the anaesthesiologist came in, Ari put on his "brave face" that I've mentioned before.  Mouth in a deep frown, brows furrowed, and chin quivering... he refused to cry.  If there exists a moment in time when I can explain the true feeling of heartbreak, this is it.  It's sadness, pain, and nausea all at once plus the deep desire to shout out loud (but what would I say?) and hold my baby close.  "It's OK to cry." I told him.  He shook his head no, frowned deeper and raised his chin in bravery. 

"It breaks my heart." I said, more to myself than anyone else.  "Me too." The anaesthesiologist added.  Surprised, I looked up and his eyes had filled with tears.  He looked away, cleared his throat, and got back to business.  Later, one of the nurses told me that no one had ever seen him emotional over a patient, but he was extremely touched by Ari's bravery and medical history.

Click the link to see his pre-op video here.  You'll get a glimpse of his brave face toward the end, after I say "I love you".  His words that are hard to understand are, "Mommy, I'm scared."Ari pre-op 4.7.12

It took two hours and 50-60 entries into Ari's esophagus to get out all of the food, piece by piece.  We were admitted as inpatient and when the GI who performed the surgery (one of Dr. Blumenthal's partners and ironically the same one who was on call for Ari's last emergency procedure) came out to talk to me, he gave me a look that I've seen from other doctors in the past.  It's one that can only be described as hopeful and sympathetic at the same time.  Making the sign for The Father, Son, and The Holy Spirit, he said a prayer, adding "I am not a practicing Catholic anymore, yet I feel compelled to pray for your son."  I found comfort in this, just as I do when his pediatrician ends most appointments with "I'll pray for you".  There are so many things I love about The South, and unabashed displays of faith, regardless of religious belief, are one of them.  Home by lunch, we slipped right back into our normal routine.

The last two weeks have been filled with appointments and triumphant lines through my to-do list.  Ari's urology appointment provided some clarity as well as reassurance in my decision to resign. We cannot schedule the Mitroffanof (hole to catheterize his urine through his belly button) until after he has a spinal MRI (late June), a likely re-release of his tethered spinal cord, a urodynamics study 3 months later, THEN the Mitroffanof created, a 10-12 week recovery, another urodynamics study, and a possible bladder augmentation.  This is all in addition to any esophageal problems.

No worries... NEXT year will be better... We'll be over this hump.

Sound familiar?

Handle with Care

Ari is at an age where he talks non-stop, his face animated in imitation of adults.  I often stop and focus on the moment, hoping to burn the conversation in my memory so one day I can tell him, "When you were little, you once told me...".

But this past week, he said something that I cannot get out of my mind, regardless of how hard I try.

He started with, "When I'm not fragile anymore, can I ..."

I don't remember what he wanted to do, but I do remember the feeling of my chest tightening and nausea in my gut.  "He's starting to get it." I thought to myself.

"Ari!  You're not fragile- why would you say that?" I responded.

"Mom, remember?!?" he replied, lifting up his shirt to show me the map of scars and buttons on his belly and back.  "Remember what Dr. Bleacher just fixed?  My secophagus?!? I have scars and buttons and go to doctors all the time and get needles?  How did you forget?!"  To punctuate the last part, he smacked him palm on his forehead in disbelief.

He was serious and gravely concerned that his own mother did not know about his current state.

"I didn't forget." I told him, pulling his shirt back down.  "I just don't look at you as fragile.  You can do anything you want to do."

"But Mom," he said, "I AM fragile.  BUT one day I'm gonna be big, big, big like Daddy," his arms reached way up high, "and I won't be fragile anymore and I'll ride the BIG Coasters at Disney World and bring MY kids on the coasters, too.  And when I'm not fragile, I'm gonna play sports like my friends and go to a big kid school like college.  I may even play football like Daddy.  But I'm fragile now, and I can't do that... but one day... Can I?"  He looked at me with hope and worry in his eyes.

"Yes, Baby... one day you can do all of that."  I answered, choking back tears and giving him a great big hug and kiss.  He wiped his mouth and patted his heart.  "There," he said, "I put it in my heart for later."

He happy-danced away and once he turned the corner, I sat down and sighed.

The truth is, I don't really know what he will be able to do or not do.  Will his trachea collapse in the middle of an important game or musical performance, momentarily taking his breath away?  Could his body handle sliding into first or twisting to swing a golf club?  What if he fell on his bottom, where the spine is bony and deformed?

I let the subject drop, but Ari brought it up again yesterday.  He was playing independently while I was making dinner and came across a valentine from a classmate.  He pretended to read it.

"Dear Ari.  I hope you feel better soon and I hope you're not fragile anymore one day."

I once again got the gut-tightening feeling, but this time opted to redirect.

"Want to be my helper?" I asked.

"Oh, oh, oh yes!" He answered and ran to get the step stool.

They were the best grilled cheese sandwiches ever.

Tornados

I've been avoiding you...

Please don't take it personal.  Updates are easy when there's only one primary focus, but when the things start to pile up, I just try to get through each day without looking back.

For some of my long-time readers, you may recall a Care Page post where I compared my emotional state to Alice in Wonderland falling down the rabbit hole.  On the outside, she looked composed, wearing a sweet dress and grabbing a cup of tea as she continued her downward decline.  Not really scared, but lost and falling without knowing what she would find and when it would end.

There are times I still feel a bit like Alice in my own Wonderland, but lately the rabbit hole has transitioned to a tornado, spiraling 'round and 'round, with a calm void in the center of the vortex.  Things seem normal, but in reality it's spinning rapidly and growing by the day, with no clear vision on how to make it slow.

There are phrases Larry and I say over and over.  Phrases like "Things will calm down when..."  "We'll feel more settled when..." "We'll be able to do that when..."

I have come to the conclusion that  "when" may not really exist in our lives, because "when" is always morphing... and I'm ok with that.  So "when" we get past this current stage on our lives, I'll start writing more, and the tornado just may get downgraded to a tropical storm.

Post-op, Ari's recovery was great.  We slowly transitioned him back to food, focusing on purees and smoothies.  His worst case scenario would be to get food stuck in his esophagus and have to go back into surgery to get it removed while the esophagus was still healing.

Soon after he started eating, that's exactly what happened.  Of all things, mashed potatoes and soft ground beef blocked his esophagus.   It was completely blocked- not even his own saliva could pass.  We were baffled as to how this could happen.  He was chewing and taking a drink every few bites.  He usually would try to regurgitate the stuck food back up, but his esophagus and ribs were still too sore from the surgery to withstand the retching.  The blockage was painful- it broke my heart to watch him struggle helplessly.  I sat, cradling him in my arms, catching his saliva in a paper towel as he spit it out, still unable to swallow.

Larry told me I wasn't helping him, which I knew.  We had to either assist his in regurgitating the food or bring him to the hospital.  Allowing it it sit in the esophagus increased the risk of aspiration. That's when Larry had "The Idea".  One that later prompted his surgeon to say "As a trauma surgeon, I do not advocate that technique, though I am impressed with your resourcefulness and the results." Ha!

Larry suggested sitting Ari on the trampoline as he gently bounced to see if the food would dislodge.  Usually a few jumping jacks and some dancing helps his get the food up, so this technique is not far off from a methodology standpoint, but it just seemed wrong.  I was totally against it.  "It's better than another surgery." Larry countered.  I gave in.

A few minutes of bouncing and Ari's color came back.  "Food's not stuck anymore." he said, and confirmed it by drinking some water.  Larry's off the wall technique actually worked.

Now for the question... if the esophageal webbing and pouch were removed, why would food get stuck?  Afraid of another blockage, Ari fought eating.  His weight dropped to 30 pounds and food continued to get stuck.  Worry had once again set in for Larry and I.  Ari looked frail and we were supposed to go to Orlando the next week for a cheer competition for Liv.  The whole family was going and the mini vacation was so needed.  Concerned over Ari's weight, his GI put him on an antihistamine that had a side effect of an appetite stimulant.  It seemed to work, but he was still choking.

Contingency plans were made for Larry and Ari to stay home, which saddened all of us.  We already did a Disney trip when the 2 of them stayed home and Liv and I went with my parents and my brother's family.  Our subsequent Disney trip ended when we had to leave the park via ambulance and spent the rest of the vacation, and Thanksgiving, in the hospital.  We really wanted the break... together.

The weekend before Orlando was a fun one for the family.  We left the weight our current situation behind and spent Saturday at The University of Georgia Dance Marathon benefiting Children's Healthcare of Atlanta (CHOA).  Liv got to hang out with MattyB, a talented 9 year old who has an impressive YouTube following (over 100,000,000 hits!) for his rap videos.  His mom and I were connected through a mutual friend and he was looking to film a video for his original song "That's the Way" at CHOA, which turned out to be a challenge.  I got her in touch with the Dance Marathon organizers and he was able to film there... and Liv is in the video!  Even more, MattyB has a video blog and he interviewed Liv and Ari.  Here's the link.  MattyB Raps interview with Liv and Ari at UGA Dance Marathon Ari's dance move is so funny!  MattyB is so sweet as he bends down to talk to Ari.  He and Liv got along well and played all day.  It was, without a doubt, the most perfect, normal day we had in a long time.  Here is the link for music video, too.  Liv is the one in the pink shirt and giant Uggs. :)  Ari makes a brief, shy appearance in the front row by Liv.  MattyB Raps "That's the Way" video

On Monday morning, I woke up, ready to conquer the growing to-do list of calls and appointments for Ari and preparing for our trip to Orlando.  My alarm went off and as I reached for my phone, I saw missed calls and texts from my mother- sent at 11 pm the night before and 3 am that morning.  Panicked, I called her back to see what was wrong.

"We just got back from the hospital."  She told me, "Dad fell."

Damn it!!  How did I miss her call?  I check my phone volume obsessively every night before bed to make sure I am available in case of emergency.  I looked at it again and noticed the silence switch on the side was on.  I must had caught it with my nail after turning up the volume.  If there is a word that goes beyond awful, that is how I felt.

"What happened?" I asked.

"He was letting the dog out and she escaped off the leash, running toward another dog. Dad ran after her, slipped, landed on his new hip, and rolled into the street.  He was unable to get up... we had to call an ambulance.  The ER doc said it was just muscular, but he couldn't even walk to the car. I don't know what we're going to do."

I got Liv dressed and out the door for school and went straight to my parent's house.  Something wasn't right.  My father couldn't even stand with his walker that he still had from his recent hip replacement.  Attempting to move made him break a sweat and almost pass out from pain.

I got his pain meds in order and watched him suffer.  It was gut-wrenching to see.  Mid-morning we received a phone call from the Emergency Department.  The Radiologist read his x-rays again and they had missed a fractured femur during his visit the night before.

I immediately called his hip doctor and spoke to his nurse, explaining the pain, difficulty of movement and femur fracture to her, strongly suggesting that my father be in the hospital.   I also requested that his surgeon look at the x-rays and call me to discuss a plan.  In a patronizing voice, she told me that I needed to understand the difference between urgent and emergent and my father was not emergent. She also told me that his surgeon would not view the x-rays that day because he was in the OR and didn't want to bother him.

I wanted to tell her that I, of all people, understand the difference between urgent and emergent.  I LIVE urgent and emergent, but I didn't...  Instead I suggested he view the images in-between cases. Within a few hours, the surgeon called us personally and told us to get to hospital immediately- the fracture was severe.  Back to the hospital via ambulance and on IV painkillers, he was finally able to rest.  We requested a subsequent x-ray to compare to the original one and further damage had occurred.  His femur was shattered at the top and vertically split down the middle.  The surgery required removal and cleaning of the bone fragments, banding it back together and multiple blood transfusions.

While my father was in the hospital, Ari had another esophagram.  This time, we did it standing up with food dipped in barium.  What we saw left us silenced and nodding. It was the "ah ha" moment we needed.

Starting with just barium, which is the texture of a milkshake, Ari swallowed.  His swallow was strong and then the barium stopped in a new pouch exactly where the esophageal pouch existed before.  It just sat, not going anywhere.  "Let's give him a sip of water." I suggested.  Whoosh... the barium went right down, only slowing again at the narrowing to his Nissen Fundoplication (the upper curve of his stomach is wrapped around the esophagus and sewn into place to inhibit food from coming back up).

Intrigued, we moved to a piece of banana.  The same thing happened.  This time we gave him two bites.  All it did was make the pouch bigger.  Again, nothing moved past this spot.  One big swig of water and down it went.  We tried 2 more foods and saw the same thing.  It appears that Ari does have any peristalsis (the wave pattern of the esophageal muscles as it "squeezes" food down).  We knew it was slow, but I don't think any of us, doctors included, knew it was nonexistent.

Here we thought texture was the problem, when all he needed to do is chew well and drink after every  bite.  We were excited and bewildered to find this out.  Since then, Ari has been eating, and eating, and eating, weighing in at a hefty 35 pounds.  He still chokes occasionally, but his confidence and self-monitoring is apparent.

All four of us made it to Disney World the following weekend.  Though the trip was not issue-free for Ari, it was all within the realm of our normal.

Home and back into a routine, my days are packed with a do-to list that's never complete... But it doesn't matter.  I don't have to wait for my "when" to be happy.  I've relaxed a bit- taking time to crack-up laughing with friends, enjoying little moments, and cherishing my time with family.  It's important that I genuinely appreciate my "now" because I have a suspicious feeling that my "now" very well could be yesterday's "when" and that could mean the tornado has started to slow down... at least for now.

I'll still have my helmet and shoes in a safe place... just in case...

We're home!

So I'm a little late in writing this post, but with good reason... pure exhaustion from lack of sleep and a really stupid self-inflicted injury.

After a sleepless night at the hospital on Thursday night due to the Ari's bowels "waking up" and gas that had him crying in pain and moving more than his body wanted to allow, Larry and I switched sleeping arrangements.  It was Cheersport time in Atlanta and I had a weekend planned with Liv, the A-Towne All-Star family, and 20,000+ other cheerleaders at the Georgia World Congress Center.

Ari had an esophagram (a fluoroscopy study of the esophageal motility) on Friday to check for visible esophageal leaks.  When none were seen, he had a popsicle and sat up in a chair for the first time.  A huge step for him!

Friday night was smooth for Larry and Ari and Saturday brought a big advancement in his healing- the bedside removal of his chest tube which freed him to take a few steps.  Unstable on his feet, he wobbled over to the chair and waited for Liv and I to visit after Day 1 of competing.  He was so happy to see her  wearing her ATA uniform!

On Sunday, his eating progressed to applesauce and pudding and the doctors decided that he was well enough to go home.  After having his central line removed, they were discharged!  There was a problem. Liv had not even performed yet and we originally went to the hospital in one car, which I was driving.  In stepped my parents, who were very excited to be part of Ari's discharge process.  As I cheered on Liv's team, I wondered once again what we would do without them living so close.

Ari's nights were... and still are... not the best.  He's having a lot of nightmares yelling "no needles!" "I don't want to be here!"  "don't do that to me!  It hurts!".  It literally breaks our hearts.  Additionally, the movement in his sleep in painful at times, though it's getting better.  He woke up crying for me six times last night.  It's a wonder I actually got Liv to school on time this morning.  Larry's out of town for work, or we would have shared the duty.

It took some time for Ari to get his balance and strength back, but now he's his normal, active self.

And now for the stupid injury portion of this blog...

My parents bought the Liv a trampoline, a promise they made to her years ago and had it delivered on Monday.  It's HUGE and literally takes up our whole yard.  She is beside herself with excitement.  So much for all the English garden ideas on my Pinterest Board!

Those who know Larry and I well know that we are not, shall we say, the "handiest" of people.  I quickly opened the boxes and convinced Larry to put it together with me.  After attempt number one failed (a legitimate mistake), we put it together a second time and it was still not right.  My dad came over on Tuesday morning to help while Larry was at work.  Somehow, I managed to crush my right pinky between a falling metal bracket and the metal frame.  My nail immediately turned dark purple and the throbbing pressure was unbearable.  After watching a YouTube video on how to alleviate the pressure behind the nail, I heated up a safety pin, help my breath, and burnt a hole in it.  Can you guess where this is going next?  Yep... I successfully alleviated the pressure AND successfully inserted an infection directly into my nail bed.  Brilliant.  A tetanus shot, antibiotics, and a full round of labs later, the trampoline is still not put together.

That English garden is sounding better and better!

I'm amazed at how well Ari is healing, though I'd like to see him put on some weight.  We're starting an appetite stimulant tonight and we'll see if that helps at all.  Once he gains a few pounds, we'll schedule the spinal MRI (third time's a charm!) and an endoscopy to check out the esophageal healing.  We also need to schedule the mitrofanoff surgery... more details on that to come.

For now, we are enjoying some family time, trying to catch up on sleep, and will eventually put together the #^!%* trampoline.

Ari's healing is nothing short of miraculous and I know a lot of it has to do with the support and prayers of all of his friends and family.  Larry and I reflected on this often as he spent his time in the hospital looking at pictures friends drew him, watching movies they gave him and snuggling with new stuffed animals.  We are overwhelmed by the generosity and love of our family, friends old and new, and Liv's cheer gym- the ATA family... THANK YOU!!