Headed Home Part 4 - Direct admit June 25 2015, 7 Comments

August 31, 2013  

A follow-up blog to this.

Justin had just drove away with Bryer to bypass the ER and directly admit him to the 10th floor (Neuro).  I was left with Remy and Sander who I snuggled with in our bed for a couple more hours.  I know I fell hard asleep and I assume they slept as well.  I can't remember all the details as to where I took the kids, but at any rate, the kids were situated and I headed for NCH.  

I drove as I have so many times both hands clutched on the steering wheel...I remember being so full of fear...feeling that I didn't want to walk in and see him suffering.  I felt like I was headed into battle, but I carried more weary and despair than warrior in my heart.  It was a beautiful, sunny, warm day.  The sun hit me square in the face, but yet I felt engulfed in such darkness.  So much so, I had no words to pray. I needed to talk to somebody.  My mom was sleeping in preparation for her night shift at St. Ann's Hospital, so I dialed my friend Chrissy, who lives in NC.  She is a prayer warrior and Sister-in-Christ.  I talked with her the whole way down updating her on the situation, what had transpired the night before, the direct admit and ALL I was feeling.  I remember telling her I felt as though I was headed into hell and I didn't want to go.  I certainly wasn't feeling brave or full of courage.  My tank was on empty and my trusted artillery seemed to be MIA.  I can't remember exactly what she said, but I know it lifted me enough to keep putting one foot in front of the other as I made my way past the security guard and onto the elevators.  

I ended the call and swiped my badge to allow access into the 10th floor hallway.  As I walked, I noticed a commotion outside a room about halfway down the corridor.  I wasn't sure if it was Bryer's, as I hadn't been to this room yet.  But my step quickened anyway.  As I got closer, I could tell it was in fact his room.  There were 2-3 people outside and when I turned the corner, there was a room full of doctors and nurses surrounding his bed.  

"What's going on?" I stated in my unintentional Mom-has-entered-the room voice.  It was obvious Justin had been so busy, he hadn't had time to warn me with even a quick text.

Our eyes met.  It was a familiar exchange of helplessness.  He was right in there at Bryer's side assisting the 6 others.  I managed to catch Bryer between busy bodies.  He was as white as snow retracting…heaving for breaths, but quickly almost panting, if that makes sense.  His eyes were opened and staring blankly off to the right, rimmed in red and purple from such a horrid night of seizures and zero rest. He jerked in a repeated fashion, the seizures still had their grip. Remember, that's why we brought him in….but now it seemed we were reacting to something new.  His head was turned my way and I could see the sweat on his brow.  

"Oh Jesus, help him." I whispered.  I had a feeling come over me…he's going to die.  Right here.  Right now. Because let's be realistic, HOW MUCH MORE CAN THIS BABY ENDURE!  I fled to the bathroom to grab a rough piece of toilet paper and wiped the tears that had started to spill.  I paused and looked into the mirror.  I had seen her face before.  

I stepped back into the chaos.  Just in a diaper, I could visualize his g-tube site.  I'd developed an eye and keen sense of awareness for that thing.  It was oozing green from around the site as he simultaneously vomited green bile. It was clamped shut like what we'd do at home between feeds.  It shouldn't be oozing like that, I made note.  All the while, his temp is climbing and his stats were declining.  

"Hey, can someone put his g-tube to drain?"  I loudly asked.

"You're right," a nurse responded.  It was put to drain and the oozing subsided, but the green bile was only diverted and began to quickly fill the bag. 

His diapers were filling just as quickly with the same looking green ooze and they couldn't keep up.  Bless Justin, he took over the rapid diaper exchanges and clean-up duty.  I love that man.   

I made it to the head of the bed and began to rub his hair.  He needed another IV access and fast for fluids.  The IV team came, but even with their expertise, they always had a difficult time with Bryer.  By this time, the PICU team had come up to help transfer.  I saw the familiar face of one of the fellows. 

IV team lady was about to stick when the fellow said, "We need to move him first.  I'd be more comfortable if he was downstairs." 

"Ok but his sites will cool by the time we can get him down there," she curtly replied. 

"I don't care, I want him down there now!"  She barked.  The IV lady backed down.  They moved him and I was so glad to be on our way to the PICU.  

Next came IV access.  Six tries for two IV's, one landing in his belly and the other in his left arm. Not bad in comparison as sometimes it took up to 13 painstaking attempts.

The PICU always had a way of getting things under control. They managed pain, decreased his work of breathing, put him on a cooling blanket for his fevers, started fluids etc etc. They got him comfortable, for the most part, which is ALL I could ask for or wanted.  Justin went home to be with the kids.  It was now about 5pm.  I remember sitting on the PICU couch alone taking in the happenings of the previous 48 hours... it was a jumbled mess.  I had no answers yet for what was happening. We knew seizures, but now what did he have going on?


In walks my Dad.  I wasn't expecting him, but he could not have come at a better time.  As any frightened little girl wants her daddy, that was me.  I just wanted to crawl into his big lap and let him make things better. And I am sure he felt the same. 

He sat next to me on the couch and with a deep breath said,  "What's going on?" The full awareness that we had JUST brought Bryer home less than 2 days earlier lingered with his question.  He put his arm around me. 

"Oh Dad, " I sighed as I buried into his embrace.