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...