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

 

ICU Day 1: Knock 'em down

 

a grey and rainy day

After fully recovering from being run down, I went back to the room as refreshed as one can be, eager to do what I can do and just to have a few more hours with him, no matter what state he is in.

Sadly, the subsequent night was completely sleepless.  When I returned I found he now had an overnight PCA stay with him, which was a great help since he is so inhibited by the painkillers and anti-anxiety medications that he is in serious danger of falling.  Over the past weeks, Andy's nighttime restlessness has gradually increased with frequency and intensity.  Finally, it culminated in trying to get up every 20 minutes from 10pm until 7am.  Then at 7:15am the doctor visits began and the regular Monday commenced once again.

However, his stomach pain and organ swelling had also increased, so each time he engaged his core to get up and out of bed he was in visible distress.  His exhalations were growing into loud moans.  The first time this happened last month and the nature of it was so frightening I started crying.  It was a sign his fungal pneumonia and Epstein Barr viremia as worsening, that his lungs were not doing well, and possibly his heart, too.

Wonderful Hannah who has been helping Andy from the beginning.

 

In two months, Andy's medical chart app has gone from saying;

 "Welcome to YOUR HOSPITAL STAY; you are being TREATED FOR: 4 issues"

to:

"Welcome to YOUR HOSPITAL STAY; you are being TREATED FOR: 20 issues"

After 36 hours of no sleep, at 6pm I left Andy in the capable hands of his night nurse and PCA. He was unable to speak but could smile a bit and we squeezed hands. I went home to sleep. 

However, that wouldn't be the case.

At 10pm I got a call from a nurse on the floor that he had a breathing episode, hypoxemia, and they are attempting a CPAP mask to help force his lungs to take air.  It broke my heart to watch him try to deal with it as long as he could, then try to take it off to get a break.  They could rush over and say, "Andy, buddy, you can't take that off, okay..."  I know how hard that was for him.

His room was filled with 12 or 15 people, triaging, bustling, giving and following orders, troubleshooting problems, then suddenly it got very quiet.

I took his hand and everybody watched the monitor and listened to the beeps.

His breathing became more laborious and spaced out.  More valleys appeared than peaks.

"Andy?  Darling..."  

His hand started to relax in my palm and my vision started blurring with tears and the Resident Doctor said it was time for me to make the decision as his health care proxy.  Are we putting in a breathing and feeding tube and going to the ICU?  Are we going to keep him going only to pummel him again in 3 or 4 more weeks with more chemo?  Or is he leaving us right here, right now?

What's the plan?

I know what Andy's plan is - we talked about it at the start of this.  Andy's plan is that he fights with everything he has 100% of the time and it doesn't matter what the odds are.  He fights.

So I left the room while the professionals did what they had to do to save his life.

Then, at 2am I took three trips to our car, lugging all we had packed into his room over the month and drove home in tears.

Living here at the hospital for almost 30 days has given me a bit of a surface level look into medicine, and I'm glad in a way to have seen so many things happening in a variety of places: The ER, the Bone Marrow Transplant Unit, the Infectious Disease Units, the ICU, the Triage centers.  It's been an education.

 

It was hard for me to leave the floor we'd lived on for a month and grown to know many people there, to go into the new floor which seemed darker, a bit more run down and filled with strangers.

It was hard seeing him in the ICU, so many tubes and new machines all over.  When he would momentarily wake up and want to remove them, his wrists restrained to prevent critical injury, it was very difficult to take in.  We want more than anything to go home, go back to our lives just a few months ago.

The silver lining in this is that they were able to get an essential kidney dialysis done.  I felt a sense of hope again. 

After spending many hours in panic attacks, totally despondent, losing my will to live, at some point I have to get it together and adopt Andy's mindset:

"Veronica, we just have to set 'em up and knock 'em down."

You know, Andy, you're right.  

What's the problem now?  Issue X of 20.  Ok, what's causing it and how do we fix it?  

We set 'em up, and we knock 'em down.  One issue at a time.

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Many thanks to:

Mom & Dad

RN Kayla, PCA Deb, RN Hannah, RN Michele

RN Abbie, RN Kelly, sweet Gloria

The Intubation team, The ICU team, the Residents, night nurses, PCAs & staff.

Dr. Poorva Bindal for her expertise, compassion & excellent advice

 

THANK YOU THANK YOU THANK YOU

 

Also, thank you to Dr. Richard Stone, at Dana Farber for taking my call and the nice conversation.

My dad went to high school with him, and he was valedictorian of that year.  He also had nice things to say about my dad, who indeed, is a nice guy as well.  I loved Stone's choice of yearbook quote: