Headed Home Part 1 - Embrace Instead of Chase June 16 2015, 8 Comments

I've been going back through my journal.  Some of my writings there are lists of facts, dates, times, doctor's names and stats with short bursts of emotion and some prayer.  I'm trying to go back and fill in more detail.  It's quite the task, but one I am compelled to complete. I just want to get his story down.  So for those interested, here is a part.

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West Syndrome.  Bryer has West Syndrome. We were told this yesterday (August 22, 2013).  Dr. Mytzinger, Director of Infantile Spasm Clinic, delivered the news.  

Let me back up.  

Tuesday evening, August 20,  Bryer was fussy and I could hear that he vomitted.  I went in about 11:20pm and saw he had.  I changed his bed, wiped him down and and got a new onesie on him.  I layed him back down.  He spit a tiny bit again.  I got him up and decided to hold him in the rocker.  He was fussy and I could tell not feeling well.  

Still battling the stomach virus, I thought.  He had had high fevers since Sunday night/monday morning…105 actually.  We took him to the pediatrician who suspected enterovirus as Remy and Sander had just gotten over the same thing.  But, we were managing and thought he was over the worst of it.  Mom stayed Monday night to give us a break.  It was a bad night.  But, by Tuesday afternoon he seemed to be doing better.  His temp was low grade.

Back to being in the rocking chair.  Rocking, patting and singing, I could feel him start to heat up.  Suddenly, he tensed, eyes widening in fright like he was scared out of his mind.  A look I have never seen and didn't want to see again.  It was followed by a cry like he was scared…almost a whimper.  Then he went back to whining and fussing.  Odd, I thought.  His sudden jolt and terrified face had actually made my heart jump.  I had never seen him do anything similar before.

A few minutes later it happened again.  And again, it scared us both.  

I said, "Justin did you see that?"  He was busy readying his feeding pump and about to administer his midnight meds.  I told him to come watch.  He did it again…same thing. 

"I think these are seizures or some type of spasms.  Get your camera." 

He captured a few of them. They seemed to increase in frequency and intensity, when all the sudden he stiffened up, his eyes widened, and he stopped breathing in my arms.  

He turned blue.

Justin swiftly scooped him from me and took him to the floor to assess.  

I had my phone and frantically yelled, "Do I call 911?  Justin! Justin want me to call?"  I wish I could say I calm and collected, but I was not. 

"Just give him a second.  Bryer! (pause)  Bryer! (pause) Bryer!" He called to him.  He laid motionless, his color was returning, but he was still dusky and blankly unresponsive.  

I pressed 911 for the first time in my life.  I gave our address and they were there within 2-3 minutes.  I ran down to greet them at the door. I could immediately hear the sirens.  We brought him down and laid him on the carpet.  He was breathing, but still unresponsive and his color was bad.  His O2 was in 60's.  They took us, no sirens, to Children's.  I rode with him in my arms on the guerny.  They gave him oxygen as he stared aimlessly.  About half-way there, they hit a bump and it jolted the ambulance.  He let out a small erruptful cry and seemed to come out of it a bit.  It was all so strange.

Bryer and I were in the ER from 1:30am-6:45am.  His g-tube was leaking green bile.  He started having white jelly-like stools that were so foul, something none of them had ever seen.  I could get him settled with eyes closed for maybe 5 minutes at a time before he would startle or before they bugged him.  There was no sleep or rest. His camo onesie was soaked with sweat, so I took it off.  I changed diaper after diaper of the white jelly.  After a lumbar puncture and 6 IV attempts, they decided to transfer us to T6, the Infectious Disease floor.  

I was not happy about that.  At all.  I tried to tell them he just needs to go to the PICU.  They were under the impression that the seizures where febrile.  I argued that I thought they were spasms and that neuro needed to be involved.  Having a child with no diagnosis, you tend to read a lot on everything.  I had read of them before.

It was now Wednesday morning, August 21.  T6 is in the old part of the hospital.  It's the strangest feeling being there - like a different universe - or stepping back in time.  I didn't feel comfortable. 

I finally got ahold of Mom to update and Justin came around 9am.  He had stayed at home with the kids.  That's just how we rolled.  

We waited for rounds which didn't happen until 12pm.  Meanwhile B, dressed in a little yellow gown, lay awake and constantly moving. He was unsettled and seemed to be in pain.  Justin and I left at 1:30pm so he could get the kids and I could nap.  

Mom had arrived to stay.  She later told me that music therapy came by.  It struck me as funny and then with sweet sadness.  Oh mom.

She heard music/singing coming from next door.  It sounds like angels, she thought.  

Curious, she peeked her head out and saw many doctors collected outside the door.  Not having any concept of music therapy, she thinks, "Oh my that poor child must be dying and they brought the "angels" to sing for him/her." 

A few minutes later one of them popped their head in,  "Would Bryer like music therapy?"

"Heck yes!" Mom said.  So three "angels", as she describes them, came in to sing.  They sang Twinkle-Twinkle and something else.  

Bryer quieted. 

My mom then asked if they take requests.  Yes!

Can you sing Row Row Row your boat?  Yes!  And we can do it in a three part harmony!  

Oh my goodness, that exchange made me laugh.  But it was one of his favorite songs that I repeatedly sang, so I knew why she had requested.  

Next she requested Jesus Loves Me and they sang it beautifully… just like she'd imagine angels would.  Mom was overcome by it all, and buried her head into my dad and sobbed.

Later Justin returned to relieve her while I stayed with Remy and Sander. They were finally going to move forward with the EEG we had asked for.  Meanwhile, he lost the one IV they got in his foot after 8 attempts.  IV's for him were like gold and every time I heard he had lost one was like a sock to the stomach.  They came back to try again. After one poke with no success, they said, "Sorry there is nothing more to try."

So they went off for a short EEG.  When Justin and B came back, my friends Amber and Brooke had come with cookies and Jeni's ice cream.  They sweetly prayed over B and encouraged Justin.  They left around 9:30pm and shortly after, around 10pm, Justin then went down to Subway.  He had no sooner sat down, when a Dr called him on his cell phone and said he needed to get back up to the room.  "Bryer was failing," they said.  

Justin ran back.  They had tried 4 more times for IV with no success. He needed fluids.  He was in septic shock which means his BP was low, his temperature high, his HR high and his breathing was rapid. They transferred him to the PICU to put in a central line.  After he got the fluids, he did stabilize.  He had still not slept and never did that night even with morphine, chloral and a psych drug. UNREAL.  Justin said he fell asleep for a brief 15 min.  

I got the call just after I had fallen asleep at midnight and he shared the update.  He said it was bad, and I could hear the deep concern in his voice.  He was waiting for them to get a line and would call me after they did to advise whether I should come or not.  

In the time between Justin's calls, I have never felt so broken in spirit. Although my heart had broken several times over Bryer, it felt like the remaining pieces were shattering.  I had gone through many, many situations with him, but in that moment…I had never felt so torn. Things seemed different this admission with the seizures, like maybe this was the end.  I didn't know what to pray.  My heart's desire was that he'd be healed.  But, I was beginning to feel like I needed to pray God's will over mine.  So, I prayed, "Lord have mercy on my son! Bring him comfort, peace and rest.  Help me to accept your will for him and for us. Lord, prepare my heart."  Those were my succinct prayers.  Over and over.  

I got up from bed and walked back and forth in my dark bedroom.  My mind raced in a panic,  "But, Lord, bring him through this so I can be with him if you choose to take him.  I want to be with him!"  

I called my mom. I text Kari and Chrissy for prayer.  I then heard from Justin he was stable.  I finally fell asleep at 3:00am and awoke to Remy standing at my bed at 7am.  Sweet girl.

Remy's stay-and-play for preschool was that Thursday morning. I felt it was important for me to be there, which is was, but now I was completely stressed about being there and not with Bryer.  It was an all too familiar two-way feeling I lugged everywhere I went.  I got the kids up and ready, taking Sander to Kelly's, our beloved sitter.  On our way there, Sander sadly said,  "Me want to go to hospital. Me want to see Bryer."  Remy in the way back pipes up, "Me too!"  She then said something under her breath that I did not hear. I asked her to repeat it. Again couldn't hear.  "I said, POOR THING!" she shouted.

Remy went with Kari after the stay-and-play.  She took her and Eli to the zoo and "they had a great day" I later received via text.  It was always a lift to hear things were well on the home front.  I headed down to Children's.  Justin needed relief.  I knew the grueling night he had.  I'd had some of those as well.  He said Bryer yelled all night long and never slept.  It was my turn to stand guard over his electrodes as he kept pulling them off.  He was quite literally out of his mind and it made me sick all over to sit by and watch.  Neuro didn't want sedation because it would mess up the EEG.  Ok, I understood that, but it didn't make it any easier.  A Neurologist came down and said they wanted to keep EEG running for another 24 hrs. UGH.  They weren't catching Spasms, just abnormal EEG.  They adjusted the electrodes and within 10 minutes, we got a call.  They got what they needed and Neuro would be down to talk with us.

Enter Dr Mytzinger, Director of Infantile Spasm Clinic, about 5 minutes after Mom had shown up.  She happened to call off work in order to come down to NCH.  She came at THE right time, God's timing.  Dr. M came to the door.  He was a dark-haired, young handsome-ish man wearing a white coat and dress slacks.  He said, "Can you come with me?  Lets go talk down here. " And with that he made a motion down the hall.   He led us into a family room.  My legs began to shake once I sat in the chair.  I knew he was going to tell us something.

"Bryer has Infantile Spasms.  They are a certain type of seizures we see in children under 12 months that present as a certain rhythm on the EEG.  Bryer has an underlying brain problem.  We don't know what causes his brain problem, but we know the brain problem causes Infantile Spasms and a chaotic EEG.  Brain problems cause Developmental Delays.   Infantile Spasms and chaotic EEG also contribute to Developmental Delays.  We can't fix the brain problem because we don't know what is causing it.  But my job is to take the Infantile Spasms and chaotic EEG out of the equation and hopefully give him a chance to reach his full potential, whatever that is.  We will do this with a medication called Sabril which we will start, August 24, once it arrives.  You will administer it for 2-3 weeks during which time you will be looking visually for Spasms in Bryer.  If you don't see any, then you come back to Clinic for an EEG to see if his EEG has also improved or calmed down.  Basically, this will gauge whether the drug is working.  If it is, we continue on for no more than 6 months.  If not, we talk about next steps."

The other option he discussed for treatment was something called ACTH, a steroid.  Bryer was in no condition to try this drug.  It wipes out your immune system.  It would have killed him.

He went on, "If you have Developmental Delay, chaotic EEG and Infantile Spasms then you are said to have West Syndrome.  The prognosis isn't great."  

I asked if many kids die in his clinic.  "Yes, many, but not all," he answered. 

I asked how the medication would help him.  What could we expect to see as a result if it began to work?  I was so hopeful thinking that perhaps this will help him develop.  He answered, "If Bryer smiled before, he might smile a little more.  If he enjoyed listening to music, he might enjoy it a little more." 

This was the first "something" we had to go on.  But still there was, "He has a brain problem, but we don't know what is causing the brain problem." It was never black and white with Bryer.  Yet, up until that point, no Dr had ever stated that Bryer had a brain problem.  There was always this hope I held, "He could improve if I do XYZ therapies for/with him." This was the first time that any expectation for him had been set or we were given a possible prognosis. 

As I walked back to his room that night, I felt the weighty titles of Occupational Therapist, Physical Therapist, Audiologist, Visual Therapist and Oral Therapist shed from me with each step. 

And when I stepped back into his room, I was just Mommy.

I felt free to just love him.  

Of course there would be time for therapies and of course I have always loved him, but I could now leave the bulk of those therapies to the experts and I could just enjoy being his MOM. Before, should Bryer be awake and pleasant at home, I would feel immense stress to get some type of quality therapy in feeling his progress or lack there of was in my hands, because no one had told me otherwise.   I wasn't giving up.  No, I was just able to let go and embrace instead of chase. Embrace instead of chase; it felt so healthy.

I asked to hold him and since they had gotten what they needed on the EEG, he was sedated enough to be settled and snuggled. 

We rocked in the dim light of his monitors.  In peace.

Mom pulled up a chair and we talked through everything we had just heard as the tears gently fell.  We talked about what it meant and how it made us feel.  We talked about how much we loved this baby and how happy we were that he was resting in my arms. 

Then I called Justin and told him everything.  

Joy into my darkness - Headed Home Part 2 August 30 2014, 2 Comments

I apologize ahead of time for the errors, the going back and forth between tenses and all that stuff. It is what it is ..as I looked back on the happenings 1 year ago today. August 30, 2013

August 30, 2013 - We had just got home at 10:30pm the night before from a 10 day picu/neuro admission.  I was bone aching tired, but we were home under one roof.  All a mama wants.  Remy went to play with her friend, Christine.  I decided to take Sander on a little date to Target, then a hair cut and Five Guys for lunch, his favorite.  It had been a few days since I spent proper time with him. I was missing him and he was missing his mama.  Oh, the joy that boy brings!  Bryer really hadn't slept much the night before, but seemed content to nap on the ottoman for a bit.  We had a new seizure med, Sabril, we were trying out.  Also new to his already lengthy routine was twice daily Lovenox injections for a blood clot in his leg - a result of the misplacement of a central line into his artery and not into his vein.  Needless to say, little man kept us busy, but it was so good to be home.  Did I say that already?!?

Mom came over that evening to help as it was always chaotic, but especially soon after a discharge as we fumbled to settle back into routine.  She loved giving Bryer baths in the hospital and at home.  It was their special time together.  She is a RN by trade and has been for 30 + years.  She knows what she's doing and is good at it.  Not to mention, she loved and still loves Bryer deeply and I know he felt it...most especially during those hair washes. I didn't worry when I left him in her care.  So, as she gave him his last bath in our sink, I took the kids out to play. It was a beautiful evening. 

Really, you took Sander on a date all day and then took them out to play that night?  That seems weird when you have such a sick and fragile baby that just came home from the hospital.  But the reality is, yes.  The pendulum swing between the world of Bryer and the world of Remy/Sander often blew my mind, but even more so as I look back on it. Like being home with R & S and mc'ing a full-on stuffed animal fashion show with run way, spectators, music and twirls... as Justin sat with B on a ventilator.  Then me with Bryer during a significant brain MRI also while on a ventilator, all the while getting video from Justin of Remy riding her bike without training wheels for the first time. Me leaving B at the hospital to get Remy so we can go pick out her first pair of soccer cleats. She beamed.  I sent Justin the picture.  Me sitting in a darkened picu room eating a bag of peanut m&m's actually feeling sick-for-home, so I FaceTime the kids to say goodnight…they are full of smiles, I love yous, freshly bathed and all PJ'ed up ready for bed.  I say goodbye and look at my just-in-a-diaper, all tubed up, unbathed, deteriorating baby boy.   Not sure if I am painting the picture accurately, but swinging back and forth between the two worlds was somewhat surreal.  I digress..

Back to August 30.  We had all settled in for the night.  Bryer had fallen asleep on his blanket upon the ottoman and Mom said she would sleep on the couch next to him.  He slept from 8pm-12am.  Upon waking, he began seizing every 4-5 seconds. Nothing was helping or calming him.  I came down and together we sat for 3 hours.  We thought it was the clusters he had experienced before.  But no, it was different.  There was no letting up. We tried it all. Holding him didn't help…almost made it worse.  He was sweating.  Our body heat made him hotter. We decided to give him another dose of Sabril. Justin came down around 4am.  We called the on-call neuro dr.  He gave us a script for distat which Justin left immediately to get.  He returned an hour later and Mom gave it to B as a suppository.  We waited.  

Those dark hours from 12am-6:30am... passing him back and forth between Mom and I. Rocking, patting, singing, praying, laying on ottoman, trying left side, then his right side. More patting, rubbing, stroking his hair, praying, singing….SEIZING without cease.  He screams, whimpers and moans inbetween.  The beads of sweat upon his brow. Eyes WIDE like he's frightened. Sweat soaked onesie after sweat soaked onsie. We were doing anything we could think of to help.  But nothing did. Huddled around the ottoman, these were some of the worst moments of my life.  

The other two kids slept peacefully upstairs as we waged hell-like war downstairs.  I am not exaggerating.  If I were to imagine what hell is like, it would consist of watching your child struggling and suffering and being completely helpless to do anything at all. Counting on the extra dose of sabril.  Nothing.  Counting on administering distat….still nothing. Soon, I hear little feet on the stairs.  I look up and see Remy peering through the banister rails.  My tender-hearted girl.  Before I could order her back to bed, she scurries down and glues herself to my side.  Sander soon follows with Tiger, his go to blanket, in tow.  It is about 5:30am.  Sigh.  I remember so clearly the feeling of despair, and I could see it on the faces surrounding Bryer as he lay seizing on the ottoman.  My mom was taking a turn at trying to console and comfort, hunched over his little body, singing in his ear.  

"Ok, this disat isn't working," I say. I stand up.

It came decision time, something we had wearily encountered many times before with Bryer.  We HATED making the decision to go.  To go and to admit.  My heart completely deflated…a familiar heaviness sat upon my chest.  Anxiety churned through my veins.  I felt desperate, stomped on, so utterly grieved.  My eyes were dry and burning.  And although we had just brought him home 36 hrs earlier, we knew we had to go back.  

"Is there anyway we can bypass the ER?? There's got to be a better way,"  I plead.  

So, we call the neurologist and he arranges for a direct admit to the 10th floor - neuro. That makes me feel a little better.  

"I've got to get these kids back in bed.  Justin, I can't go.  I just can't watch anymore tonight. I will get in bed with these two and come relieve you later today.  I just… can't, " I say through tears.  

Justin, with quiet resolve, rises to the occasion.  I get the carseat and gather his belongings.  I make sure we are up to speed on meds and his feeds are on track etc.  I get Cow and some paci's.  You know when you are packing up your baby for the sitter? Kind of like that, but way different.  And with that, I send Bryer and Justin to Children's for what would be his last admission.  Mom follows behind and heads home for some well earned rest. 

The door closes.  The pendulum swings. 

I turn around and look at my 4 and 2 year old sitting on the couch.  Dawn is just peeking through the windows.  It is quiet.  I go to them, picking up Sander and taking Remy's hand, we walk upstairs and into my room.  I lay in-between to prevent a squabble and one nuzzles in deep on each side of me.  I feel overwhelming peace, love and joy as I lay there looking up at the ceiling.  Praise you, Lord. He has a way of piercing through the darkness when I need it the most.  This was one of those moments. It's true that mother's have limitless capacity for love, for I poured as much love out on them in that cuddly early morning snuggle as I had all night to Bryer.  I love my kids intensely.  All three of them. But, I will be brutally honest, I was relieved to be settled between them rather than physically and mentally suiting up to forge into the hell of suffering with Bryer.  If I could just escape for a couple of hours...I was so completely exhausted. I think I only got an "Oh Lord, help…" before I fell asleep.  

I think back on that moment with mixed emotions of guilt and second-guessing of my choice not to go that morning.  But, I am reminded of the scripture Matthew 11:28 "Come to me all who are weary and heavy-laden.  I will give you rest" and also Ephesians 3:20 "Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us.."

It was obvious I was weary and needed rest.  But, beyond rest, He even managed to deliver a shot of pure joy into my darkness.  Maybe it's just me since I'm the one who experienced it, but the fact that I can even write of the joy, peace and love I received on a night like that, is pretty darn amazing.  It is a testament to God's goodness and continued presence on our journey with Bryer. He was with me.

After a few hours of rest, I woke up and made arrangements for the kids.  Then I headed down to relieve Justin.  What I walked into, well, that's perhaps another blog post.