Monday, March 11, 2013

A week we will never forget

For those of you thoroughly confused my bits and pieces of info from updates on Facebook or Instagram or word of mouth, I'm going to attempt to sit down and re-live last week. 

Thursday, Feb 28th

I got up early, and lugged a still very sleepy Aaron into the van. Finally. We were finally gonna get into his mouth and find out what he needed done dental wise. We hadn't been able to get any sort of exam done or any x-rays. A good friend had refereed us to a dentist in Pincher Creek, who had done her autistic son's dental work. Aaron had to fast, so they'd scheduled him for the first slot of the day. I'd almost canceled a few times, when I realized how close it was to Ben's sisters wedding, but I figured we'd get it done and then head off to Utah in the afternoon, no big deal. 

No big deal until a  nurse comes out half hour into the procedure and tells you STARS is on their way, "he's stable" she says, which you cling to, even though nothing seems stable as you see medical personal running in and out of the room, "the anesthesiologist will be out to talk to you in a moment."

An eternal moment. 

Where my mind kept repeating "No, no, no..." and my spirit would thrust my desperation upward passing for a prayer. Where I searched back needing to know if I'd brushed off a prompting not to come this morning. Reliving the way my gut fell as I felt him go limp in my arms my face right up to his trying to comfort him as his breath fogged up the plastic mask little tears sliding down his temples as he gave in and closed his eyes to the anesthetic that would ravage him.

"No, no. no..." that can't be my last memory of my Aaron.

Malignant Hyperthermia was what the anesthesiologist said. I forced my spinning mind to remember, so I could text a friend and have her google it, so she could give me an edited version. Having now visited wikipedia ( and many other sites) I realize how wise that was, words like "life-threatening" and "eventually leading...to death if not treated quickly" would have crushed me at that point. 

"He's stable.... We caught it right away...." he reassured, his surgical mask clinging like a little blue beard, "not out of the woods yet." The very euphemism I would hear myself repeat to Ben and my mom, as I imagined myself crashing through the woods, grabbing Aaron and pulling him to safety. 

I would later learn, that anesthesiologist saved Aaron's life. Malignant Hyperthermia is super rare. 
I guess Aaron decided Autism was getting to common, so he decided he'd add in a genetic condition, triggered by certain anesthetics too. 

Basically--and this is my very non-medical explanation-- the anesthetic causes a neurotransmitter to stay open, which causes skeletal muscles to contract and metabolize like crazy, like a intense work out but on a cellular level. Basically the body can't regulate temperature, so even though it's called hyperthermia Aaron developed a fever, his rising temperature being one of the indicators the anesthesiologist caught, as well as rising levels of carbon dioxide. For medial people, at one point his co2 was up to 90, which apparently from the subsequent reactions of EMTs etc reading his chart, is insanely high. In the 1960's their was like a 80% fatality rate, but that has been drastically reduced by the use of a muscle relaxant drug called dantrolene.

But I knew non of this sitting at the hospital. 
All I knew was I wanted Aaron to live. 

 I slammed through the initial stages of greif and hit hard into the bargaining.

I had so many reasons Aaron need to stay.
And I was petitioning the Lord like a lawyer with a well prepared case.

So many things flew through my mind.

A random image of these brothers I'd seen last summer in PEI. Both in their early twenties the older, bigger one I could tell was autistic but it was the younger one who captivated my attention. There were crowds and so the autistic young man was struggling a bit, trying to withdraw from the extra stimulas. His little brother so naturally, as he continued to converse and laugh with the rest of their group, just would reach up and gentle steer his brother through the crowd.

I remembered thinking that kind of instinctual compassion had been built up in the young man through years of serving and loving his special brother.

How would my boys become like him, with out Aaron?!?!

We wanted to serve missions with him. Ben wanted to build him the three tiered trampoline yard  he'd planned as part of our dream house one day. Just next month I wanted to throw a celebration at Aaron's  school for Autism Awareness Day.

I could just envision this huge hole in our lives, in the dreams that we had so carefully reconstructed to accommodate him always being there. The thought of him not being there caused my whole core to ache with the painful thought of years of missing him everyday and how thousands of little things would remind me of my blue eyed boy. My whole body would surely long for him, even my hair would be haunted with the memory of his little fingers. It was unbearable to consider.

I thought of all the others who would be shattered.

Ben's Aunt and Uncle who lost their teenage daughter to a merciless blood clot after what was also meant to be a one day dental surgery. I thought how I didn't want Alli's happiest day to be mared by tragedy. His aids and teachers at school who had lost the little girl they worked with before Aaron just last year. It just was all too cruel.

I thought of how I felt I had searched for and received with such clarity a vision of Aaron's purpose on this earth. How I had held to the mission he had to influence and touch others in his unique way. How I  had come to the conclusion that his existence was intricately and indispensably linked to my own growth and progression and that of our family.

How would I become who I needed to become without Aaron?

And as I in desperation spilled my arguments before the Lord, I felt Him, as if He'd stooped down and slowly lifted my chin and opened my eyes, to a whole other vision.

I saw what I felt like was such an unimaginable alternative, yet it was okay.
And I felt my soul surrender.
And as I gave Him my trust, He flooded me with peace.

If it is Thy will to have Him home with Thee, I will be grateful for the time we had him and work to continue the great work of influence and faith building Aaron has always been a part of in his special way.  I will not loose faith, I promised, as hard as that would be, I will trust and continue to serve and testify.

If that was the Lord's plan, He would be there for me. He would compensate and make all the heartache be swalled up in his merciful grace and be for our good. I knew that.
But until I that moment I hadn't felt it.

"Your mission is the same. Aaron's mission is the same. Whether he stays or goes, your mission is still to bring souls to Christ. That is what matters."

It was as if I could envision another reality, not void of grief, but oh so full of comfort and endowed strength, where we could continue on in faith and be given beauty for ashes and where the bitter would give way to the sweet.

My will had been laid down, offered up to whatever the Lord saw fit.

I picked up my phone and went to my scriptures.
Words from D&C 7 seemed to be in bold on the screen.

What desirest thou? For if you shall ask what you will, it shall be granted unto you.

The Lord had used the teaching moment. He so wisely had let me learn for myself what I was willing to place on the alter, and now he could show me the ram in the thicket.

...Lord, give unto me power over death, that I may live and bring souls unto thee.

Power over death! Power! Priesthood! How had I not thought of this until now. Dr. Leishman, the dentist was a member of the church, he could administer to Aaron.

I paced outside the operating room, waiting for someone, anyone to come through the doors. Finally a nurse did.
"Is Dr. Leishman still here?" I asked. He was and she said she'd fetch him for me.

I think I kinda remember him from young adults up in Edmonton, but I really didn't know him at all, but I knew he held the Priesthood, and that was all I needed to know.

He came out looking so weary, unable to really assist when it was beyond the human mouth.
I looked at him with what must have been an equally weary face, with red, pleading eyes.
Before I'd even finished, through my cracking tear filled voice, "Will you give him a blessing?"
He'd replied, "Yes, yes of course, yes of course I will."

The STARS team had arrived and while they prepared all the medicines and machines they'd need in the helicopter I folder my arms and closed my eyes after watching Dr. Leishman's gloved hands gently reach and rest on Aaron's head.

The monitors seemed to beep quieter, in reverence, as in the name of Jesus Christ and by the power of the Melchizedek Priesthood Aaron was blessed. No proclamation of healing or calling forth of miracles, just a whispered assurance that he was loved of His Father in Heaven, who was perfectly aware and that He would be with us.

With that Amen, even though I still opened my eyes to probably the scariest sight of my entire life, I felt things would be okay.

I walked to my van to call Ben who was on his way with the other two boys.

Glad for the privacy as I sobbed,
"My baby, my baby" as I watched that helicopter take off.

Ben pulled up just in time for Mckye and Levi to point at the "ha-copper!!!" all smiles and excited, "Mommies!!!"

I hugged them tight and told them how much fun they would have a grandmas before I hugged my mom with tear filled thankyous  and Ben and I started the drive to Calgary.

I was so grateful for texting during the whole thing.

I could busy myself updating friends and family. Asking for prayers, and receiving heartfelt messages of concern and support with out actually having to talk to anyone, which surely would have just resulted in my tears. I was so grateful to feel like I had my friends with me, maybe not there holding my hand but instead I held them, my own life line, monitoring me as steadily as Aaron's medical machines charted his vitals.

Once we got to the Children's Hospital's paediatric ICU  Aaron's room was still full of medical personal. The anesthesiologist specialist pulled us aside and reassured us that the Pincher Creek hospital staff had done everything perfect, that they in fact saved his life. It's a very rare condition and so for a little small town anesthesiologist to one, catch it and two, be courageous enough to go ahead and say yup that's what it is lets treat it (plus get on the phone immediately  with MH experts in Boston) it was amazing.  I'm so grateful we weren't just at a private dental clinic when it happened. There was almost an excitement among the medical staff. The last case of MH at the Children's hospital was 10 years ago, so they were eager to confirm it as a "bonafide" case.

Because of the genetic component, we got to meet with genetic counsellors who told us we needed to contact extended family and let them know there was a good chance it was inherited and that before any member of the family went under anaesthetics they should be letting their Drs know their is MH in the family.  That we needed to order him a medical alert bracelet right away.

All while Aaron still looked like this:


It was so stragne to me that today was meant to be so busy. Aaron dental appointment, pick up Ben's suit at the dry cleaner, pack the boys to go to my moms, pack us for the wedding, drive to Salt Lake, write Alli's toast on the way.

I kept thinking of the quote from Pres. Monson's talk:
When compared to eternal verities, most of the questions and concerns of daily living are really rather trivial. What should we have for dinner? What color should we paint the living room? Should we sign Johnny up for soccer? These questions and countless others like them lose their significance when times of crisis arise, when loved ones are hurt or injured, when sickness enters the house of good health, when life’s candle dims and darkness threatens. Our thoughts become focused, and we are easily able to determine what is really important and what is merely trivial.
We'd signed McKye up for t-ball the night before, after going out to sushi for Ben's birthday. I had flooring samples sitting in my living room, I had outfits laid out on my bed trying to decide what to wear to Alli's wedding.

And suddenly all that mattered was wanting to hold Aaron's hand again and see him smile.





















The Children's Hospital is amazing. We were in a parent room just down the hall from ICU. Which was good on that first night when he suffered another "attack" where his fever flared and his Co2 was up again. That night a high councilman from our ward who is also a pilot "just happened" to be landing in Calgary just as Aaron had his relapse. Moments before, I had finally opened a Facebook message from his wife letting us know he was there and able to come if we needed him. We texted him and he told us later that he'd known 6 hours before when he read an email the ward sent out and the impression he had at that time, that he'd be administering to Aaron. It was a beautiful blessing that helped us all feel that Aaron would be okay.


The goal was to make it 48 hours with no occurrences at which point he could come off the   drugs for MH.

It was a little bit tricky treating Aaron, just because we had no idea how he would act once he woke up. The kid can't handle wearing socks, let alone endure a breathing tube and dozens of other monitor wires and IVs. They keep him pretty sedated, not that it took much with all the residual effects of the huge doses of muscle relaxant he'd been treated with, along with just the weariness of his own body after such a struggle.

My one friend commented on how strange it was to see this picture of Aaron, "Whenever you think of Aaron, it's his eyes you think of first. Maybe because they communicate so much that he otherwise can't."



I just kept thinking he was being robbed of his secret weapon! How were his nurses going to fall in love with him without seeing his big blue eyes or getting his Aaron-style hugs and kisses? Or hearing his infectious giggle fits?

From the foot of his bed, I thought about how much Aaron would have preferred running his fingers through his nurses long hair, rather than have his lungs suctioned.

It became pretty clear that Aaron had a pretty bad infection in his lungs. Turne out to be strep pneumonia  and another type of influenza.

I felt pretty dumb when the doctors would ask if he'd had a cough or cold symptoms prior.

Yes.

How long?

Winter? I replied sheepishly (but honestly.)

He really has been sick off and on forever. Our whole family has passed sniffles and coughs back and forth, as often as we rotate beds each night!  It's pretty impossible to get oral drugs in him, so we don't frequent the doctor. So I felt pretty guilty about that. Again I was grateful for access to my friends via text, where I could share my familiar "mommy-guilt" and receive lovely vindication in return, in the form of "oh ya pneumonia can be tricky, my sisters taken her kids in a couple times with a "pesky cough" and been told it's pneumonia." Oh, good I'm not alone.

He probably caught the other infection from all the Isites, so I tried to just focus on the positive, that we could get him a good hard hitting course of antibiotics and get him all cleaned out and home healthier than he came in.

It was a hard few days.



We got to know the hospital cafeteria pretty well.

Had a few friends visit. Armed with shampoo and treats and the distraction of their conversation.  (You knew Ben had hurried out the door, when he left with out a hat!)


Ben's mission companion and his wife brought us dinner one night.

Friends watching my kids sent darling pictures of them getting tucked into bed for the night.
Happy and safe and having a blast sleepover at friends houses.

I looked at pictures of Alli's wedding over and over again, so happy for her.
Still sad I wasn't there.

We went to church. The brother that introduced himself ended up being a paediatric  anesthesiologist up at children's who had been consulted about Aaron's case.

We looked up medical bracelets, trying to figure out how to squish Malignant Hyperthermia and non-verbal Autistic all onto the little metal plate.

I tried not to stress about the disastrous state I'd left my house in, sure that the ladies from church were in full force cleaning it up.

We looked up road reports and kept in contact with Ben's mom, who was having her own adventure trying to drive back form Salt Lake through a pretty nasty blizzard.

We held Aaron's hand and told him he woudl be jumping on the tramp in no time.

I read one of my favorite conference talk's again:
At these moments we can turn to the great plan of happiness authored by our Heavenly Father. That plan, when presented in the pre-earth life, prompted us all to shout for joy. Put simply, this life is training for eternal exaltation, and that process means tests and trials. It has always been so, and no one is spared. 
Trusting in God’s will is central to our mortality. With faith in Him, we draw upon the power of Christ’s Atonement at those times when questions abound and answers are few.



We waited.

That little purple line meant he was initiating his own breath! I wanted to take a picture of every purple pixel on the monitor!

It also meant he was getting stronger.

They weaned morphine and upped feeding tube preparing for him to wake up, waiting for him to be conscious enough to remove his breathing tube.

So much waiting.

Or so I thought.


Then I heard the nurses talking about a little boy getting released. Sounded like a big deal and I asked how longed he'd been here.

Twenty-two months. His whole little life. Suddenly, four days felt life nothing.



Monday, March 4th:

After being restless all night, and forcing the nurses to sedate him half a dozen times, he was real groggy in the morning and just wanted to sleep.

(Even hospitalized, he figured 3 am was still a fun time to be awake!)

They finally got him awake enough to take out the breathing tube.

 I'm sure he was so glad to be rid of that thing.

He kept trying to open his eyes, pulling his eyelids up as far as he could, his lids still swollen with all the extra fluids.










Then I got to hold him.

After days of feeling so helpless to give him the physical comfort he relies so heavily upon, it felt soooooo good to have him back in my arms. Awake! Alive!

My Aaron, right where he belongs.
He was still really weak, fighting infection, 
recovering form all the trauma his little body had endured. 


But I could hold his hand. 

With the feeding tube out the next step was getting him to eat. The poor guy had been fasting since the night before the dentist, so he was ready!


We sent a list of "Aaron's foods" and they managed to scrounged up three of them.

The antibiotics were a little tough on his tummy and he was needed to go to the bathroom. Unfortunately the little commode the nurses wanted him to use, looked more like a stroller to him, so we ended up rolling him down the hall each time instead. 

It felt good to feel useful. Help interpret his "puhs" and "buhs" into requests for different movies, or sips of juice. He loved ice chips, and we dutifully spooned them into his mouth, while he rotated between Toy Story 2 and Monsters Inc on his ipod.
When it had been all medical stuff, I had no idea, what he needed. But with him awake, my momminess was needed again and I was there ready to help my boy get anything he wanted.

And thankfully he wanted me, cuz I wanted him too.

And I have the granny iphone pictures to proove it!
I knew he was feeling better when he started reaching for my hair again.


Grandma Bretzke and Auntie Jaci made it and got soem snuggles of their own.















By Wednesday they were ready to release him from ICU, they just didn't know to where.


There wasn't room in the other unit at Children's and there was in Lethbridge, so it was a matter of getting him there.

Late that night Aaron ened up on his own personal flight back home. 




His teachers and his class had been so wonderful during everything.

 Sending me videos of his class singing his favorite song from circle time, or holding his special letter books, each of them offering him a "Get better Aaron!" or "We miss you Aaron.

"When I'd showed him the videos, when he still couldn't quite open his eyes, or move much, he still tried so hard to raise his little hand to wave when they all said "Hi Aaron!"

This was the text I got when I todl his teacher we'd been moved to Lethbridge.








I still hadn't seen Aaron smile though.
Ben brought McKye and Levi to the hospital Thursday morning exactly a week since it'd all began (the longest/shortest week of my life!)

I wish I would have got Levi's face, he was so concerned, he looked right past me, searching for Aaron, and then pointing (mostly at Aaron's cold sore) "Owweee??"





Aaron can get easily frustrated with his rambunctious brothers, but it only took minutes of them being there before I heard giggles from under his blankets.

Pulled them back and saw his first smile in a week!

I think he knew life was going to be normal again.





Normal. We were discharged Thursday afternoon, and came home to a sparkling house (thanks friends) and quickly returned to breaking up fights and making messes.

But I feel grateful for it all.

Grateful that the next morning Aaron woke up giggling.




I am so grateful that him leaving us was not the plan. So humbled, and thankful that our family and others get to continue learning from Aaron's special life.

But I am also grateful for that sacred moment when my Heavenly Father helped me know my heart and feel what it means to offer up our will to His all-knowing and entirely-loving plan for each of us.






I know He is real. I know He is aware of every soul. I know He will help us grow and stretch our souls in every necessary way in this mortal probation-- if we will let Him. And that all that we endure in this life is just to help us prepare for the glory of the next.

I know there is power in prayer. I know the Priesthood power is here on the earth once more, that the same power used by the Patriarchs of old and Christ's own apostles flowed through a quiet dentist and helped saved our sons life.  I know the scriptures and words of the prophets and apostles in this day need to be continually stored up, filling our wells, so when the unimaginable happens living water can flow freely to our desperate souls. I know that the Holy Ghost is there to comfort us and lead us and hush our fears.

The primary was learning about the Atonement on Sunday, and I found myself telling them, "the Atonement is every way Jesus helps us." Oh how grateful I am for His help, His strength and His merciful love.

Thank thee for all Thy help, in all it's forms. I can't imagine going through that with out the Lord.
I love The Lord. I know He loves me. I know He loves Aaron, and sent him to me so I could better understand the intensity and unconditional nature of Gods love for His children.

And as good as it felt to hold Aaron again, that is but a taste of the joy we will feel back in our Heavenly Father's arms.



PS His dental work still needs done. But a few cavities can wait...for another week:)

10 comments:

Erin Rolfson said...Best Blogger Tips

This was an amazing post! So heartbreaking and so inspiring at the same time. We're so glad your little trooper is back with his family!

Darren J said...Best Blogger Tips

Thanks for sharing. Ben and your faith is exemplary. I wish the best for you and your family.

Mr. Hill said...Best Blogger Tips

We were so concerned for your family this past week. We're so thrilled that all is well now! What a roller coaster ride!

cc said...Best Blogger Tips

I loved this post...we love Aaron so much and were so concerned about him all week. Words can't express how happy we are to see him home and happy. We sure love you guys:)

Melody said...Best Blogger Tips

So glad he's all right now.

S.L.Oviatt said...Best Blogger Tips

Dear Chelsea. Anything I might say at point seems woefully inadequate considering what you and your family have been through these past ten days. You have had, and continually have, our love and prayers. If at any time you have a slack moment, (as if that ever happens) it would be great to "hear" your voice. Your great spirit and strength are an inspiration to me. Our very best wishes to you and Ben and the boys. Brother (S.L.) Oviatt.

Amy said...Best Blogger Tips

Gah, more tears!! Oh, and Hanna had a fever come and go the last weeks of Kindergarten (4 years ago). No other symptoms though. I kept sending her to school, and I'd get a phone call that she was shivering cold, yet feverish, and needed to come home. I finally got in to the doctor, she had double pneumonia. I was shocked, she didn't even have a cough! So, it can easily go unnoticed, you're not the only one.

Aspiring Domestic Goddess said...Best Blogger Tips

I think I will never forget this post. How blessed I am to know you.

Crystal HW said...Best Blogger Tips

Oh Chelsea, there is so many emotions right now I want to express. Cheers he is still here. Gratitude for personal revelation and the comfort it brings. I am so glad you shared this all, as it filled in blanks, and helped me find an answer of my own.

yoga mamma said...Best Blogger Tips

I am thinking of you and your family and I am sending you love. What a hard thing to go through, so glad everything is okay.