ICU: Day 2 & 3 "Don't give up hope"

 

I think back to how our journey has changed over 60 days, starting from his initial doctor appointment on June 19 and cancer diagnosis on June 22.  We started in heat waves and now the leaves are changing.  

It feels like distinct arcs, as his story unfolds we move to another land, another part of the map.  

At first he was home, and we were in-and-out of the hospital for short stays and commuting to the clinic for labs.  He was his normal self, then, making jokes like "How many bed sheets do I have to tie together to lower myself from the 8th floor?" and cracking wise with the staff, ordering food for me on his phone and texting with me constantly as per usual.

I felt while this would definitely get tough in the future, but no comprehension at all of exactly how brutal it would be. 

Small shifts started as his hospitalizations became more frequent and intensive.

I noticed on my phone there were less and less calls from him.  His name stopped appearing on the Dunkin' Donuts "Order Progress" board.  No longer did text messages say "Read".

I missed seeing his picture appear on my cell.  Missed hearing the sound of his clear, kind voice.  I hated when I would call and he stopped picking up.

His painkiller regimen increased, he became more restless and uncomfortable in the night, slept more during the day, became less able to have conversations, and gradually lost the ability to stand and speak.

When he looked at me his eyes would sometimes look through me, then he'd come back.  One time as I was helping him to balance he looked at my gold cross and murmured "That's a pretty necklace."

"I think my parents gave this to me when I was baptized."

"Oh. It's nice."

Even when things got bad, he would still order extra eggs and bacon with his breakfast just to give to me, like he always does.  "Veronica, have some."  Sometimes when helping him steady himself, he'd take a brief second to just hug me.  It was so good to feel his arm around me again.

The bronchoscopy could not be performed due to his bleeding risk, and the Infectious Disease team took a different but sub-optimal sample to the lab.  

However, a doctor came in and told me it was more important that we initiate kidney dialysis that evening.  It was my understanding the pneumonia was the most pressing thing, but she said this took precedence.  So it was done, and I signed another form for him as his proxy.

At first our time lines were;

"Here's the plan for the next four to five months."

then; "Here's the new goal for the next few weeks."

"We should address this soon."

"We need to do this procedure in the next 24-48 hours"

It's been hard for our family, but we are keeping it together as best we can.  I am eternally grateful for my step-sons' excellent and loving support, as well as my parents in in-laws, who never fail to come through.  I'm also happy to be back with our dog, whose happy demeanor helps fend off demons in the night.

Many thanks to Jess, who found me in the cafeteria after her shift and offered such beautiful advice from her own caregiving journey.

We are hoping and praying that he doesn't have to be on all those tubes much longer, that his counts will improve and he can eventually come home.  I'm glad his dialysis went well and that it will help his kidney function.

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Dr. Bindal stopped me on her way out to give me a lot of comfort and impart her wisdom;

"So I want you to really hear what I am saying; there is nothing you could have done differently to prevent where he is now.  The Myelo Fibrosis and the T-cell Lymphoma... these things are no joke.  Even if you started treating them earlier we might be exactly where we are right now.  The important thing though, is that you don't give up hope.  

"I'm not going to mix words with you, okay, he is in a very precarious state and I am very worried about him.  How the next couple weeks go will be critical, he is not out of the woods.  However - do not give up hope.  If I felt it was over, I would actually tell you that.  Don't give up hope." 

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Many thanks to:

Our friends & families as always

Dr. Poorva Bindal

RN Abbie, Dr. Yan, RN Kathy, NP Lisa,

and the nice ladies at reception,

The Staff at the ICU

The wonderful people who continue to donate to our GoFundMe

 

THANK YOU - THANK YOU - THANK YOU