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.