Signs - Headed Home Part 7 September 05 2015, 20 Comments

September 5 continued...

For all that was happening, I remember laying my head down on the scratchy sheet covered couch that night with more peace and calm than usual.  I'm sure it had something to do with Justin being by my side, but it was more likely God's overwhelming presence.

The night was pretty uneventful. We woke when nurses came to check and respiratory therapists came to adjust vent settings.  But comparatively speaking, it was much more chill than Bryer's typical overnight stays.  He was sedated and breathing easy thanks to the ventilator.  He was resting and seemed to be in zero pain.  There wasn't much for Justin and I to do, but be present.  

Friday, September 6.

Justin went home in the morning to be with the kids and I traded him spots later that afternoon.  They said they were quite surprised of his progress and how they were able to wean the vent like they had.  

That evening I took Remy to get her first pair of soccer cleats.  It was a fun shopping trip, followed by Grinder's subs and when we got home we tried out her new cleats in the yard.  She even rode her bike for the first time with out training wheels...A big deal!  Sweet, sweet memories.  Bryer's status remained the same.

 

Saturday September 7

I took Remy to her first ever soccer game.  She would be turning 5 in a few weeks and she seemed so big!  But looking back, she was still so small, her baby teeth still neatly in place.  It was a glorious and beautiful fall morning... surreal. Sander sat next to me as happy as a clam in his miniature-sized chair, loaded down with snacks, drinks and a smile.  I beamed as I watched Remy in her double-braids. Bryer was not far from my thoughts.  I held my phone in my lap not to miss Justin's text updates and in return I shared pictures of Remy.  I know he felt torn as well.  I then went to trade spots with him that afternoon around 2pm which began my 24 hour shift.

It was so quiet.  

Bryer was still sedated and on a ventilator, so of course it was.  We couldn't hold him and he "slept" the entire time.  There wasn't the grueling all-day and all-night of consoling and comforting hunched over his bed on our feet or the helpless feeling that accompanied what sometimes seemed like our fruitless effort. There weren't procedures or consult after consult.  

It was calm.  

I wouldn't choose him to be so sick requiring sedation and a breathing machine, but it was a nice change to see him just resting and comfortable.  No seizures. No yelps. No moans or groans. No sweat soaked hair or wide eyes.  

But it seemed so lonely.  

Perhaps it was because I wasn't completely occupied with his needs.  But also, my mom worked Fri, Sat and Sun night that week-end, a tough stretch, so she wasn't available to visit or chat.  I am still not sure how she maintained working full-time night shifts during Bryer's life while doing all she did for us.  I know now she battled her own physical and mental exhaustion.  Ironically, she was scheduled to go part-time September 15. . .

The only "companion" it seemed, outside of the nurses, were two signs.

The DNR (Do Not Resuscitate) instructions were posted at the foot AND head of his bed.  And I didn't like it.  Because of the conversations we had with Dr. H a few nights before and our declining of the anti-viral drug (which became a moot point because Adenovirus was NOT found in his lungs) it had led us into further discussions regarding DNR.  We had prayerfully settled on a decision that, without going into too much detail, would allow for certain measures, while declining others. Those details were, again, spelled out in RED at the head and foot of his bed.  I understood why it was necessary. I did...

But their presence picked a battle within.  A battle between my flesh nature and my spirit.  Are you familiar with those?  You know the ones where you can have settled in your spirit and felt led by THE spirit in a certain area or about a certain decision? You have this peace, the kind that doesn't even make sense.  But you know it's there, like a soft blanket that gently descends, tucking you in.  

And you rest beneath its security. 

But then, because we are still flesh and not fully spirit, our humanness bubbles up to the surface and begins to disrupt our settled spirit. The enemy thrives in this circumstance and just fuels the fire with lies and doubt.  Our peace is taunted or stolen for moments….and sometimes it's stolen for longer.  The soft cover is ripped away, leaving you cold and unsure in the dark.  

Hitting your knees, you battle back.   Relinquishing your will and asking for His to be done instead.  Because your spirit knows, that's where peace can be found. That kind you don't understand but long for.

Have you ever found yourself there?  Well, that's where I was that weekend.  In that room.  Staring at those signs.  

Maybe I wasn't as prepared to let go as I thought.  My hands wanted to tighten their grips on his failing body and never let him go.  But my spirit longed for his spirit to be free and experience the fullness of life.  

I don't know…maybe I am not making sense with the description of my struggle. And maybe it's even too much to share.  But there it is.  It's how I was feeling.

It's that weekend that I first remember God putting a tune into my head…very subtly and softly…but it was there.  An old hymn, just the chorus, reminding me to keep standing on The Rock because all that other stuff is just sinking sand.

It was now early evening. I left his room and made my way to the green space in front of NCH.  I needed to get away from the signs on his bed and talk with God. There is a park with a circular path in front of NCH and I began walking.  I walked and walked and prayed.

Anxiety bubbled when I thought of them bringing him out of sedation and extubating him.  What then?  They would seemingly be undoing the peace it seemed he was experiencing and allow the seizures to regain their grip.  I started to feel physically sick.  It was September and the back-to-school germ fest had commenced at our house. Then comes winter with all its respiratory vices.  How could he make it through the fall, let alone winter?

"Oh Lord, what now?  What is next?  What are we to do?  Lord, show us.  HELP us. I am choosing to trust. I am choosing to trust.  I am choosing to trust."  I remember saying that over and over and over....and over.   

I went round and round that park.  I am a person that researches to the end of the earth.  I want to know everything and be informed to the nth degree.  As I walked, I pulled up research, accounts and articles on West Syndrome/Infantile Spasms…protocols, outcomes, prognosis.  I thought.  I prayed.  I read some more.  I repeated.  It was dusk and starting to become unsafe, so I headed back inside. 

There was that chorus again in my head. So faint, it was almost just lingering in my subconscious.  

Sunday September 8

I went home Sunday afternoon and took the kids to their favorite park.  I slid down slides and chased them around.  We had received a large package the day before and had yet to open it.  When we returned home, I set it on the ottoman and made a big "to do" letting them rip into it.  It was a huge care package from my dear friend in NC, Chrissy.  Things for Remy, Sander AND Bryer and something sweet for me too. It was absolutely. perfect. timing.  It was a box of joy and smiles.  We snuggled together on the couch and read the books and played with the new toys.  We still have the book they sent for Bryer which she wrote in.  It's in Sander's collection of books which he still occasionally picks to read.  Every time he does, I read what she wrote out loud and it makes me teary.  

Take a lesson from Chrissy, send a box of joy:)

Monday, September 9

I arrived earlier than usual.  Upon my request, Bryer would have a brain MRI before they tried extubating (taking out the breathing tube) him later in the day. Since he was already sedated and intubated, I had proposed in Sunday rounds, "Why not?" He'd had a lot of seizure activity and his last brain MRI (which was normal) had been when he was 4 months old, so "Doesn't it make sense?"  I don't know if they just obliged the Mama or if they actually agreed it was a good idea.  Nevertheless, we had it done, a kind of a lengthy process.  They'd have the results the following day.

Later that afternoon, Justin and I were both there when they would attempt to extubate him.  Dr. A (the attending that week) had talked about different scenarios that could possibly occur.  We braced ourselves at the foot of the bed.

To our amazement and delight, he did just fine and was placed on Bi-Pap.  It was a pretty good evening actually.  He looked like a little astronaut with his mask on and he was wide awake.  So. Darn. Cute.  I got to hold him for the first time in about a week.  He still was having small seizures, but we talked and cuddled for hours anyway while he repeatedly flashed me that darling tooth.  Mommy's treasure. 

I was beginning to think, "Ok, God.  Are you bringing him around?"

He was doing well enough that I felt at peace letting my mom stay that night since I had been there for about 15 hours.  We'd go home to get a good night's sleep, take Remy to school the next morning and I'd come down after I dropped her off.