Tuesday, March 6, 2012

March 6th, 2011- one year ago

The day started out with my update to everyone....
"We have been up since 2am with a fever and trouble breathing. He is working really hard and even with 3 ventolin masks, there was no improvement and audible wheeze.
He was desating on the oxygen level at 30%. We raised it to 100%.  They called in ICU and the doctor, RT, etc. Scary. They switched him to higher flow oxygen at 50% and he seemed to work a bit less. Gave him epinephren mask too. No help with wheeze. ICU ordered an Xray in the room and more blood work. They saw more haze on left side in the xray and now they wonder if it is an uncommon bacteria or immune issue. They are checking his blood for CO2 to indicate that he need more help. If he requires oxygen to increase to 70% or more to keep sats up, they will move him to ICU to have staff and equipment on hand if they need to intubate.
Yes, I'm scared. Not sure how this got so bad.
Good news is they are all watching him very closely and realize they need to do more.
Pray hard"

My parents were stranded on their vacation, unable to leave the island any sooner than the following night.  They were due to arrive at midnight on Monday. They were beyond panicked- knowing that I needed them, the boys needed them and they were devastated over Zack's move to the ICU.  They called us and emailed throughout the day and felt helpless.  It was an impossible situation and they were stuck worrying and unable to anything at all.

As the day went on...my stomach was feeling sick. 
How had this happened? 
What could I have done? 
Did I wait too long to bring him in? 
Did one of the boy's bring this virus home? 
What the hell was happening to my son? 

The word ICU was the scariest thought.  This was the place where we had been at the beginning of Zack's life (the photo is when Zack was 3 days old) and I prayed we would never have to go again.  While I was tortured by the thought of this, as the day went on, I knew he needed their expertise.  He was bad.  I was scared.
Paul was now at the hospital...panic had set in to both of us, but we had each other. 
The doctors and nurses were panicked and they decided to move him downstairs to the ICU, in anticipation of an intubation (ventilator).  I packed up what I could, very quickly, as he was declining with every minute.  It looked like we would have to intubate- the oxygen masks weren't working.  Our only hope was a bipap machine that is an external device that does the breathing in and out for him.

We arrived downstairs in the room just outside the ICU doors- the one with the stained glass window on the door.  I had seen this room used before, for families to see their loved ones, after they had died or as they were dying.  But this time, it was used to try to save my son.  The hallway was so familiar and the intensity of the staff was so much more than we had been used to upstairs.  We met Zack's new doctor.  We met the new nurses- one who knew Zack's Godmother, Libbie, very well.  She was lovely and took good care of us.  We seemed to get him settled on the bipap and he was okay. The bipap requires that you breathe through your nose...it was working to keep his sats up.  We had a few moments of hope. 

Facebook post from that day
"Zack has been moved to the Critical Intensive Care Unit at SickKids. This was the place where Zack started his life...we were hoping never to come back.
He was put on a bipap machine...we are really praying they will not need to intubate and put him on a ventilator. He is not even responding to blood pokes. Keep him in your prayers...thank you for all the offers to help. Paul and I appreciate it more than you know."

I crawled in the bed beside him and just held his hand while he slept.  Paul and I took turns calling people and emailing to let them know how Zack was doing.  It was the three of us in the room and we had no idea what would happen next.  He still needed ice on his head and under his arms, as his fever was still high. Zack's Godmother visited, then left to give us some time with Zackie alone.  It was calm for a few hours and we felt like we had crossed a major hurdle.

I'm not sure if Zack was scared or if he just had more trouble breathing, even with the bipap, but he started to breathe through his mouth.  This meant that the bipap wasn't working and he was desating with each breath.  He needed to breathe through his nose to be effective.  I lay beside him trying to hold his mouth closed and allow the machine to work.  He fought me- which I secretly loved- I had missed his fight.  After about an hour of this- they called in the doctors again and we were told they would have to intubate.  It was now late in the evening on a Sunday and they had to call in the main anesthesiologist to do this intubation.  Zack had a shortened neck and internal structures in his mouth and jaw that made him a very difficult intubation.  I knew those notes were in his charts- so I begged them to look up the notes from previous doctors who had insight into how best to get the tube in.

Paul and I held each other and just went along with whatever they could do to help Zack breathe.  They were going to attempt the intubation in his room.  He was just too fragile to move.  He had to be bagged- like you see on the medical shows- when the bipap was taken off.  The doctor would bag and the nurse would hold the mask to his face.  It was a two person job.  Paul and I stood crying against the wall...they had asked us to leave, but there was NO WAY we were leaving him.  It was the first moment we thought we might lose our sweet baby.

They cranked the bed flat and lay Zack across the bed, width wise.  I ran over to hug him, kiss his body, tell him I loved him and they asked me to move.  The doctors quickly reviewed the notes, but I was yelling for them to read it all.  Nurses held his body while two doctors worked to get the instrument in to intubate.  When the mask was removed, he desated to 10....almost dying in front of our eyes.  I screamed out "please go faster" and was "shhhh" by the nurse to "let them do their job, mom".  I sobbed into Paul's shoulder and held tight- I felt weak in the knees and my heart was pounding out of my chest.

It was clear that the intubation was NOT going to happen in this room- they needed the Operating Room, and the equipment in it, to help them.  With Paul and I running behind, they bagged him again as they swiftly wheeled his bed into the OR.  It was now late on Sunday night, the OR was dark.  The usually crazy waiting room was quiet and still.  It was only Paul and I standing at the glass doors, unable to go any further.  The nurse and doctor had warned us that if they couldn't intubate him, our son would have to have a temporary tracheostomy to help him breath.  Even this horrible outcome was reasonable in our minds, just help him....please!!!!

We waited for news...

We called Libbie, Zack's Godmother, a Cardiac nurse to help us understand what was happening.  All we heard for the next half hour were the announcements;
"ENT to the OR STAT"
"XRay to the OR STAT"
"Cardio Vascular to the OR STAT"

We looked over at Libbie, with each call over the speaker.  We knew it was for Zack- but why?  What the hell was happening?  She looked scared, maybe sad as she imagined all the medical possibilities of what was going on.

I couldn't feel my body....I had to sit on the ground, my eyes were closed and I was sick. I felt as if, if I kept my eyes closed, this might not be happening.  Not to Zack- not to the little boy who just walked for the first time a few months ago, not to the precious brother of my two sweet boys, not to the son that brought us more joy and pride than we ever imagined...

We stood at the doors, saw doctors flying in with their weekend clothes on and throwing off their coats...they had come in from home.  It had maybe been about 15-20 minutes since we last saw Zack.

We waited...it was almost midnight.  It was almost a new day...and we didn't know if our son was even alive.

The doors opened.


amotherworld said...

I don't even know what I can say, Heather. I weep for you and your family :(((

Mom vs. the boys said...

I'm a mom to three boys like you, I feel horrible for your loss. :(

@fleur_de_lotus said...

Dearest Heather - I know there are no words to make any of this easier. I am thinking of you & your family and the amazing strength & grace you have shown through all of this. I am also so very proud of you for what you have accomplished in the name of Zach. In my thoughts xo

Deborah Coombs said...

I'm shedding some tears now for you all. And I'm sending strength and love and huge, enveloping hugs you way.

I hope writing these experiences and feelings helps to process them. It's been quite the year.

TJZMommy said...

thank you for reading these memories.
I have found that it is a release from my own memory- it is now out of my own head.

I think that this is part of healing- because it felt time to write and remember.

lexi said...

You are extremely strong person Heather being a new mom it's breaks my heart to read what you and Paul went through and my heart breaks as no parent should go through this

Hugs to you all


Marisa P said...

I'm speechless and my heart is shattered. I can feel myself holding my breath for what is to come...and can feel the fear of what i experienced come rushing back while reading your journey.
All i can say is i'm so sorry you had to experience this....such a beautiful boy...i'm so sorry.

Lisa said...

As you know, we were there today. As always, we thought of Zack and took a moment to talk to him. I know he heard us. Love to you. L and A

Smita said...

These memories are so hard to hold onto by yourself - I am glad that by writing the words down, it has helped in the healing....you are an incredible woman...xox

Smita said...

These memories are so hard to hold onto by yourself - I am glad that by writing the words down, it has helped in the healing....you are an incredible woman...xox

Karina said...

Heather, I remember your tweets from that time and my heart breaks again reading your post.

You, Paul & the boys are all so strong, please know you are all in my prayers. Huge, huge hugs.

Natalie @Nat_Rea said...

Feels like yesterday and yet feels like so much time has passed! Love to your beautiful family, you've been through so much.