Strength and Miracles

Ari pre-cecostomy change... before the fear set in

The past few weeks have been crazy... we've had so many medical appointments for BOTH kids.  I'll start with Liv... Bless her heart, that kid cannot stay injury-free.  For those of you who are new to my blog, Liv is our 10 year old daughter.  She's in 5th grade and is super sweet (ok- I'm a little biased!) and an amazing big sister to Ari.  I've often described her as "stoic" over the years and I still think it's fitting.  She was 3 when Ari was born and over the past 6 years, she's seen, experienced, and dealt with more than any child ever should.  She labels herself a caregiver and takes her role very serious despite our repeated efforts to encourage her to just be a kid.

I'll never forget this one time when Liv was 4 and we were walking down our wooden staircase together.  I had Ari in one arm and his IV pole in the other, his feeding pump connected and running.  Liv was talking to me and slipped.  I couldn't put down Ari or the pole because they were attached... I couldn't even reach for her.  I had to watch her fall, tumbling down the stairs until she reached the landing, then quickly bring Ari and the pole down the steps before I could help her.  She was ok, but I wasn't.  My guilt was overwhelming.

That's just one example of many... She's held him down while I replaced buttons, changed colostomy bags, and cleaned bleeding diaper rashes.  She's stepped out of her bath to find a house full firemen and EMTs working on her brother, the ambulance and firetruck outside of her window.  She taught herself how to catheterize Ari, so that he will never be in an emergency situation where she couldn't help him.  She's seen him in the hospital, unable to breath on his own and experiencing terrors from a mix of pain and medications.  She's had to sacrifice so much... Leaving parties, play dates and even Disney World when Ari had a medical problem that needed immediate attention.

Through it all, she's been a solid source of comfort to him, always knowing the right words to say.  I often write about Ari's strength, but Liv's should not be overlooked.  She, too, did not have a choice in what our family dynamics would be, yet she has stepped up, without resentment, to help and unconditionally love her brother.

We were so grateful when Liv found a sport that she loved... there was finally something just for her.  She started tumbling at ATA in 2nd grade and tried out for their competitive cheer team the same year.  I cannot say enough positive things about the impact this gym and its program has had on her.  It's a place where she can go and escape our medical-centric life at home.  It's about being on a team and working together, about setting goals and gaining new skills, and a place where she can tumble with a crazy amount of intensity.

This same intensity is what inspires her to push through pain... through signs that her body needs a break.  Through ankle sprains and breaks, a broken back, and most recently,  3 small breaks in her left hand.  Ironically, none of these injuries happened at the gym.  Not once did I rush her to the hospital for treatment because I didn't even know she was seriously hurt.  She works through the pain until she can no longer take it and THEN tells me there's a problem.  That's one tough girl.

So... back to the doctor appointments... Her hand injury required 4 doctor visits in 10 days.  Yesterday was her first day cast-free.  I picked up carpool last night and could not believe that she was on the floor with her team, stunting and tumbling as if the injury never happened.  I admire her perseverance, but certainly hope she learns to listen to her body a little bit more.

Liv practicing stunts

Liv tumbling

That brings us to Ari.  We are facing a serious problem with pre-procedure anxiety.  Maybe it's a form of PTSD or maybe it's just nerves, either way,  it's bad.  Ari gets this "high" of sorts any time we go to a doctor's appointment or to the hospital.  He's all happy and silly and then the minute it's time to begin, he is overcome with intense fear.  He starts to shake and cry, screaming "I'M NOT READY!" "I NEED MORE TIME!" "IT HURTS!" "DON'T TOUCH ME!" and backs himself into a corner, blocking his body and any attempt to touch him or pick him up.   He complete freaks out.  There is no rationalizing with him once he starts.  It usually takes many adults to position him and hold him down.  Here's the crazy part (as if that's not crazy enough), as soon as the doctor begins, he snaps back to being funny and happy.  For example, after 3 of us had to pin him down for a flu shot, he received the shot and said, "Well that was fun!" and got up like nothing happened.

On Tuesday, he had his cecostomy button changed.  I'll be the first to admit that it doesn't feel good.  His anxiety was over the top when Dr. B was ready to begin.  He yelled the same things and blocked his body from everyone.  It took 4 adults to get him in a safe position for the procedure.  As soon as it began, he calmed down, talking to Dr. B as if the struggle didn't even happen.  When we left, he turned it me and asked, "Wasn't I brave?"  Ummm... How do you answer that one?  I seriously think he erased the screaming from his mind and only focused on the actually procedure.

And then there was yesterday... Ari was scheduled to have an esophagram, which is a barium swallow study in fluoroscopy.  We scheduled it because he has been audibly refluxing in his sleep.  I can actually hear the swoosh of reflux and then he chokes on whatever comes up, putting him at risk for aspiration.  Before ordering any other tests, Dr. B wanted to see "what we were working with"... basically how the esophagus looks today versus last year.  During this study, we watch the barium go down his esophagus and into his stomach- kind of like a video X-ray.  He's had dozens of esophagrams before.  Sometimes we see severe strictures and sometimes we see food stuck, but we always see bulbous pouches, random narrowings, and unnatural bends.

The esophagram began like all of his other tests recently... he totally freaked out.  I tasted the barium to show him it wasn't so bad (it was flavored with Kool-aid), the radiologist even positioned herself in the equipment and drank the barium to show him that it was easy and painless.  He would't budge from the corner he had backed himself into.  It took her threatening to remove me from the room to get him to reluctantly comply.  After all of the drama, he took one sip and said, "mmm...yum..." and just like that he snapped out of his fretful state and was sweet and compliant.

As the procedure began, I watched the screen with anticipation.  It has been 13 months since his last esophagram and I remember it well... the barium just sat there and didn't move.  He had no visible peristalsis (the wave pattern of squeezes that moves food from the mouth to the stomach).  The results prompted his specialist to order a test called Esophageal Manometry which can accurately test esophageal motility.  The test results were devastating... after his swallow, Ari had ZERO peristalsis.  The specialist sat down with us and explained that Ari needed to go back to g-tube feeds for all of his calories and nutrition.  Eating by mouth would be for recreation only, purees, and followed by sips of water... This was long-term, not temporary.

2 years prior, we had removed Ari's g-tube that he had since birth because we thought he no longer needed it.   Unfortunately, the hole never closed and he ended up having surgery to "core out" the tract that had formed because every time he ate by mouth, it poured out of a hole in his stomach and down his body.  It was a horrible as it sounds.  Removing his g-tube was a major step forward... replacing it is an even bigger step back.  He was choking daily and losing weight, so we knew it was the right thing to do.  Last October (2013) he had the surgery for a g-tube placement again.

Over the course of this past summer, he seemed to be eating better, so we let him eat by mouth more and more.  Eventually, we stopped using his feeding pump altogether and he was getting all of his calories by mouth.  We assumed that with maturity came the understanding that he needed to drink after every bite to help the food go down, which he was doing.

I was not prepared for what I witnessed yesterday... for the first time EVER, Ari had peristalsis.  Not just a few irregular squeezes, but a normal wave pattern.  I looked at the radiologist in disbelief and she looked a little shocked, too.  She confirmed that Ari, indeed, had esophageal motility.  There were still narrow sections, pouches, and bends, but all of that paled in in comparison to what I seeing.

I was overcome with emotion and knelt down to look Ari in the eye.   "Do you know what this means?" I asked.  He shook his head no. "It means you are one of God's miracles."

"Aww... it was nothing." he answered coyly, flashing a big, barium coated smile.

I hugged him tight and prayed, so thankful for that moment and for his miraculous healing.

I haven't talked to his GI or surgeon yet, so I don't know what our next steps will be with controlling the reflux, but for now I'm just going to bask in the glory of a day I never dreamed I'd see.