This one is harder to write. So hard, in fact, that I put it off and put it off and when I finally wrote something it was like a clinical report of what Nick went through. I then actively avoided it because I realized how difficult it was going to be … but now I’m here. I will pick at the scab and open the wound and remember what it felt like. Because it was worse for him.
When something goes wrong and you end up in the emergency room you have hope that the doctors will figure it out. That’s their job. They make it better.
With Nick, that was not the case. He got worse and it was terrifying and heartbreaking.
When we got to the hospital he was still able to talk, albeit with a slur to his speech. He could tell us what was happening with him. We could reassure each other.
My dad and I reluctantly left Nick on December 27th in the SIMCU. SIMCU is one step down from the ICU. Everyone kept telling us that, which was nice. We didn’t want any of that ICU nonsense.
By the end of the day on December 28th, Nick had been moved to the ICU.
He was losing muscle control and he couldn’t swallow properly. He wasn’t even able to keep his eyes open. He was deteriorating as we watched and there was nothing we could do.
I clung, as I always do, to my sense of humour. When Nurse Dagmar gave Nick his last sip of water and he choked that meant it was time for a feeding tube. They couldn’t risk getting anything in his lungs.
I was not there when they put the feeding tube in but I was able to document the event:
The 6 Faces of Feeding Tube Nick
Nick’s vision was starting to get very blurred by this point so I’m not sure he ever fully appreciated the awesomeness of that picture.
We had to keep laughing. The moment we stopped laughing we would be finished. As long as we’re laughing, we’re fighting!
During all this, Nick was sent for multiple MRIs and CT Scans. He was losing more control of his limbs, his speech, his vision. His breathing was becoming more laboured.
When he came to the hospital he appeared to be having a stroke and was treated for a stroke in the Emergency Room. Now he was not presenting as a typical stroke patient. Nothing about Nick is “typical” though, so we weren’t really surprised. We just wanted answers.
Years ago my father had Guillane-Barre syndrome and this appeared to be very much like what he went through. Losing control of limbs, inability to swallow. We clung to that as the cause of Nick’s problems because my dad is up and walking and talking with very few side effects of his ordeal.
Still, no one could confirm. More tests were done. So many tests.
All we could do was sit and wait and be there for Nick. He had lost the ability to talk by this point so he had to communicate through blinking. It’s hard when you’re in a totally foreign situation to try to decipher what someone wants when all they can do it blink. It’s hard not to break down. I had one rule: While you’re in the room with Nick, keep it together! I was pretty good at sticking to that rule. There were many nights when I kept it together right up until I left him for the night and then I would cry all the way to the car and all the way home.
I have struggled with depression for many years but this was different. This was despair. Being helpless while someone you love goes through something so awful is panic inducing. There’s sadness and anger and grief and all you can do is try to endure.
Hugs and reassurance were all I could give him.
- Sitting and waiting and worrying
Nick has had asthma his whole life and he’s never been a champ at breathing. The stroke had taken a toll on his lungs so the doctors decided he needed a breathing tube before things got worse and he got into serious respiratory trouble. I wasn’t there when he was told, but my parents were and they both burst into tears. That was on December 30th.
I showed Nick this picture and he has very little memory of this time. Thank God for small miracles. He was quite drugged up when they put the tube in and they kept him drugged until they were able to replace it with a tube that was inserted into his neck, rather than down his throat. Thank God for good drugs!
That brown fur is Chewbacca. He stood guard.
Also, please notice the arm restraints. It is my opinion that putting arm restraints on a newly paralyzed person is a dick move.
We made it to December 30th but things only got worse for Nick. We had no definitive diagnosis, only questions and fears.
One of the hardest parts for me was that I didn’t have my Nicky to talk to. I already missed him like crazy.
I still have a hard time dealing with the anger and the grief. Sometimes it’s actually a physical feeling. Like there’s someone screaming in my head who is trapped and impotent in the face of all this pain. I want so badly to go back to December 27th and undo all this. To get my Nick back. But I can’t.