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"