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