Angels Among Us

I genuinely wanted to post an update sooner, but in addition to WiFi issues at the hospital, there was no time... An odd thing to say considering I haven't left Ari's room since his stretcher was wheeled in at 8 pm on Monday night, almost 7 hours after he went back for the surgery.

His time in the operating room was only 4 hours, the rest of that time was spent in the PACU.  The surgery went exactly as planned with the addition of a central line, which is a surgically placed catheter that is passed through a vein to end up in the thoracic portion of the vena cava, or the right atrium of the heart.

As we prepared for the surgery, Ari was nervous, but happy to have both Larry and I with him.  As his stretcher was pushed back to the OR, he held each of our hands until we reached the doors where we had to say good-bye.  He was brave and didn't cry. Larry called after him, "Whatever you do, don't laugh and definitely do not smile!"  It is a surefire way to get Ari to display the biggest of grins.  The nurse looked up at us right at the doors were closing, telling us he just flashed a huge smile.

Larry and I walked back to the room in Day Surgery where we were to wait until the surgery was through.  We sat, praying silently.  I think that emotionally I was more prepared for this surgery than Larry because I was the one who took Ari to all of the diagnostic and pre-op appointments.  A couple of weeks ago I was useless, crying at the thought of what my baby had to endure again.  At this point, I was emotionally numb.  It was an uncomfortable feeling.  I wanted to cry, my heart ached, but I couldn't... I just felt empty.

Larry, on the other hand, had not allowed the reality of the situation to sink in until that point.  I have often said that when one of us is weak, the other must be strong.  That's part of our agreement from the start of this journey.  I realized that I was not numb from lack of emotion, rather I was emotionally stable to help Larry rise up.  Ahhh... the beauty of partnership.

I sat there, reliving the time when Ari went back into surgery in 2010 to "grow" his esophagus.  I remember closing my eyes and envisioning angels gliding into his operating room.  The angels in my mind were not the kind one would see on top of a christmas tree or in a picture.  They looked like people- old, young, kind, gruff... an imagine that both shocked and comforted me at the same time.  Call it Godly, call it an out of body experience, or just call me crazy, I can see it like it was yesterday.

I expected the same thing to happen this time, but it didn't.  Instead, the only face I saw was that of Ari's surgeon's father, a well-loved pediatric surgeon himself who sadly passed right after Ari's 2010 operation.  I took comfort in the belief that he was the angel that Ari, and his surgeon, needed for this procedure.

The discussion of angels may make some of you uncomfortable.  Just a few years ago, I may have been skeptical myself.  It was a series of experiences when Ari was in the NICU that made me more spiritual and open to the idea.

There were many points in time when, quite frankly, we worried whether Ari would survive his time in the NICU.  On a particularly difficult day, I was sitting at his bedside when a woman from the cleaning staff slowly and methodically pushed a mop by his crib.  She looked to be in her eighties and was missing most of her teeth.  I had never seen her before.  She stopped in front of Ari, then about two months old, who was staring at the ceiling and whispering baby babble.  Slowly, she turned to me and said, "He's talking to his angels."  Startled, I looked at her and she smiled.  "Yup." she said, "That's exactly what he's doing."  "You really think so?" I asked.  "I know so." She said, and continued pushing her broom.  In all of our time spent at the same hospital, I have never seen that woman again.

Later that evening while Larry spent time at the hospital with Ari, I was home having dinner with Liv, then 3 years old.  It was hard to swallow past the knot in my throat.  I was waiting for the call telling me come to the hospital, the call that meant his condition was critical.  My heart was split between being at the hospital with Ari and home with Liv.

During a lull in our conversation, Liv told me, "Mommy, I have a secret."  Caught off-guard, I asked her what it and who told it to her.  We had a "no secrets from Mommy" rule in our house and I was curious to hear what she had to say.  She motioned with her pointer finger for me to come closer, which I obliged.  "God told me the secret." she whispered, "He told me to tell you not to worry,  that Ari is going to be okay."  Unable to hold in my emotion, I hid my face in my hands so she wouldn't see me cry.  I believed her... I really did.

For Ari's first few years of life, he continued to talk to his angels, playing peek-a-boo and telling stories from his crib.  When we'd ask him who he was talking to and he'd point, but we saw nothing.  Eventually the question turned into "Are you talking to your angels?", which he always answered yes.  We took comfort and knowing they were there to protect him.


When Ari got the floor on Monday, he was on oxygen, had a chest tube (which is still the primary source of pain for him), a urinary catheter, a central line, an IV, a pain medicine catheter placed in his ribs and the large incision.  To do this surgery, his surgeon had to cut around his left side and separate the ribs in order to work on the esophagus.  When his eyes fluttered open, he wretched and whispered, "food's not stuck.", as if to reassure us.  A little while later he woke again, hoarsely said "ouch" and again went back to sleep.  After the anesthesia wore off, his pain increased.  He didn't complain and didn't cry.  All he wanted was to hold my hand and know I was there, something I was more than willing to do.

Post-op day one was tough, though removing the catheter and IV helped a bit.  The only word he spoke was "ouch" and then he added "medicine" when pain meds were needed.  Day 2 was even tougher and we upped his pain meds and added Ativan.  He seemed to turn a corner today, chatting, playing with the toys in bed and talking about Dr. Bleacher fixing his "sock-a-sa-gus".  He spiked a fever tonight and has been waking up in pain.  It's just the cycle of recovery.

Though in a lot of pain yesterday, it is only fitting that my Little Lion got his roar back while proving to Dr. Bleacher that he's so strong.  For those of you who are new to Ari's story, you may not be familiar with our team of doctors.  Dr. Bleacher has been our ring-leader for this entire journey and will always have a place in my heart as one of my personal heroes.  Ari thrives today because of Dr. Bleacher's ability and willingness to go the extra step.  More of that to come in another post.

We were also thrilled to see Ari's GI, Dr. Blumenthal (Dr. B) today.  Thursdays are his surgical day (which we know all too well) and hew snuck away for a few minutes to check on Ari.  As Ari was receiving his breathing treatment, he held Dr. B's hand and told him all about the foods he wants to eat once he heals.

He has an esophagram scheduled for tomorrow, which will show us if there are any esophageal leaks.  He has not moved from his bed, laying on his back the entire time.  I cannot imagine how difficult it will be to get him on the fluoroscopy table for the study.  If all goes well, he'll move onto clear liquids.  If that works, the chest tube will be removed and we'll try some other liquids, eventually moving to purees.

He's been watching Hi-5 DVDs over and over since we arrived... Ari's personal favorite and a hospital tradition for him.  Prior to this surgery I asked Ari if he could do one thing, what would it be?  His answer was to see Hi-5 in concert.  Being that they haven't been together in 9 years, I knew this couldn't happen.  Instead, I decided to try to locate his favorite Hi-5 actor- Shaun Taylor-Corbett.  I reached out to him via Facebook and told him a little about Ari and his wish, asking him if he'd mind sending Ari a quick message.  What Shaun did for us is such a demonstration of personal character...  Please check out the link to see Shaun's private concert and inspiring words for Ari via YouTube.

When Ari watched the video, Larry, Liv and I were all overcome with emotion.  Ari answered every question as if they were really conversing.  When Shaun told him to sing along, he sang with such pride.  I still tear up thinking about it.  For days following receipt of the video, Ari would run to me and say "Shaun from Hi-5 knows my name and he said I'm big and strong!!"

The lessons we can learn from Ari's strength and outlook plentiful.  I'll leave you with a conversation we had today.

I asked Ari if he could have 3 wishes, what would they be?  His looked at the TV and said "more Hi-5", looked at the bed and saw that a sock came off and said "new socks" and thought real hard about the third thing before answering "learn how to write my name- Ari Grant Shumbres".

Encouraging additional dialogue I asked him what he wants to be when he grows up.

His reply was "Just Ari."

Could a more perfect answer exist?

Ari's personal Hi-5 concert