21 days in ICU: a journey on sacred ground – I saw my mom

The surgeon explained that if the 2nd surgery went well we should see a quick change in mom’s alertness. Within 24 hours he would expect to see her responding to commands, shaking her head yes/no, squeezing hands, moving toes, etcetera. He also explained that if this didn’t work, he didn’t know what else they could do.

The 2nd surgery lasted about 2 hours. By this time, I had returned to work and to my home with my children. I was an hour away, trying to find the balance in being there for my mom during this most awful time and still provide some sort of normalcy for my children. Lynda and Gloria were in the old familiar surgery waiting room with the seating pods and the colorful mural of surrealism reporting on mom’s status: “patient is doing fine.” I spoke to the surgeon afterward. He explained that once again, all had gone well. He removed her gall bladder and washed out her abdomen.

Now we wait.

Being an hour away was a challenge but the Doctors and ICU nurses were great at keeping in touch with me. I spoke to them several times a day for updates. I hadn’t planned to go see my mom for another day or so but the day after her 2nd surgery I left work early on a whim – the desire to see my mom too great to deny.

My life was falling apart. My job was ending with no other option in site. Things with my boyfriend had become worse. Instead of us becoming closer through this situation, we became further and further apart. I was working so hard to be a good mom to my own children who very much needed me and of course, my mom was so sick. All I wanted was my mom. I needed to hug her, to cry to her and to feel her love and support.

The updates from the nurses that had been inspiring. My mom was awake and much more alert. She was responding to commands consistently and tracking with her eyes. As I drove I dreamed of walking into my mom’s ICU room. I would walk in, she would turn her head and she would recognize me. Each day, as this nightmare wore on, the hope that kept me going was imaging the day when I would walk into her room and she would know who I was again – and I would have my mom back.

I walked into the ICU unit. I walked passed my mom’s room to gather the gown and gloves required for entering. I walked into my mom’s room. Slowly, I watched for her eyes to turn to me. I greeted her, as I always did

“Hi mama.”

She turned. She looked at me. Her eyes locked on mine and I could tell she knew who I was. I started sobbing. I cried to her telling her how much I had missed her and how much I loved her. I cried and her gaze remained fixed on me. At times, her face shifted and she almost cried but didn’t. I could tell that although she wasn’t able to emote or fully respond, she was there. My mom was behind those piercing blue eyes and it was the most beautiful site I had ever seen.

“It is so good to see your eyes, Mama.” I kept telling her.

I told her everything that had happened. I told her they removed her colon and she had an ileostomy. I told her how sick she had been. She stared at me – never leaving my gaze. I could tell she was hearing me and processing the information. Her face winced at times and she seemed overwhelmed.

I turned on CNN for her just as the nurses came in to “turn her.” The nurses would turn my mom every hour to avoid bed sores. For the last two weeks my mom was mostly asleep or extremely out of it when they did this. On this night, she was more present – still far away – but much more present. As they awkwardly turned my mom I could see her discomfort. I could see her pain. They laid her back with freshly placed pillows and my mom’s face was bright red and tears streamed down her cheeks.

“Look at her,” I said. “She’s in pain.”

I proceeded to tell them how important it was to treat my mom with more dignity and to use the lift in the room instead of manhandling her. They were responsive and apologetic.

I looked back at my mom. Her eyes fixed on the ceiling. Tears still streaming and CNN still on in the background.

A while later, when mom was sleeping, the surgeon came in unexpectedly. It was his night off but he wanted to check on my mom. We stood at her bedside and traded comments on the improvement she had made that day. We started to talk about recovery and what that might look like. For the first time, I realized just how sick my mom had been and what 2 weeks without nutrition, 2 weeks being bed ridden and 2 major surgeries does to a person. We were looking at months of rehabilitation. Mom would need to learn to walk again, talk again, eat and just about everything else. I stood there stunned, taking it in, mentally preparing for the second leg of this marathon. I glanced over at my mom and was surprised to see her eyes open. She was awake….and she was crying.

That night I saw my mom’s pain and suffering. She told me with her eyes that she was suffering. Just as I had cried to her and told her about all my pain and suffering, she cried to me. She held that gaze with me and told me.

21 days in ICU: a journey on sacred ground – Emergency Surgery

Emergency surgery: this was the “worst case scenario” the surgeon had warned me about 2 days earlier. The surgery mom was about to undergo was very dangerous and has a 50% mortality rate – and yet, I felt relief. We now had an answer and we could now take action and one way or another – this would nightmare would end.

The surgery waiting room is set up with clusters of bench seats that create ‘L’ shapes. Each ‘L’ is surrounded by little walls that provide privacy so families and loved ones can be insulated in little seating pods. There is also an open area with tables and chairs. 2 of the waiting room walls are covered in a colorful mural of surrealism. A tv monitor provides status updates for each patient in surgery such as “Procedure has started. Patient is doing fine,” or “Patient has been moved to recovery.”

G, Lynda, Gloria and I were all there together, as we had been, every singe day since my mom went into ICU, and several other close friends lovingly joined us bringing supplies like phone chargers, blankets, food and cards. For four hours we enjoyed each other’s company. We played rummy, did puzzles, ate comfort food such as meat loaf sandwiches and laughed. We were optimistic and spoke of my mom’s determination, perseverance and strength as the tv monitor continued to post “Patient is doing fine.”

When the surgeon appeared I jumped up to greet him. He explained to me that my mom had done well despite the “insult” she had received. He thoughtfully informed me that he had removed her entire colon and she now has an ileostomy. He went on to describe how my mom’s abdominal cavity had been covered in excrement and that he diligently cleaned every crevasse, nook and cranny using 24 liters of water. He posited that the perforations in her colon had likely been there for days. He gave me time to process the information. He waited in silence as I slowly conjured questions. The next 48 hours were most critical.

We celebrated the success of the surgery and our little support group disbanded – each of us, on our own, processing all the information the surgeon relayed about the surgery and the days ahead.

Over the next 2 days my mom’s body did amazing things. Her heart, lungs and kidneys were making a recovery. All the numbers were improving and things seemed to trending in the right direction. G, Lynda, Gloria and I knew this would be a huge lifestyle change for my mom but we new she would be up for it. If anyone could wake up without their colon and with an ileostomy and roll with it, mom could. We made jokes at her bedside as we imagined her healing and coming home.

“Mom isn’t going to deal with any shit ever again!”

We laughed so hard at that one.

The only piece that was still very concerning was her mentation, her awareness/alertness. Even though they had completely stopped giving her pain medications and it had been days since she last received any type of sedative, she was very drowsy and unable to be roused. This was the piece of the puzzle that we needed for her next phase of recovery. In order to get her off the ventilator we needed her to be conscious and alert. Mom was still fighting an infection and the surgeon wondered if perhaps her gall bladder had become infected and should be removed to help control the source of infection. He explained to me that he could “go in” again and remove her gall bladder and at the same time, wash her abdomen out again to ensure it is as clean as possible. He apologized before using the analogy of washing spaghetti.

“Imagine,” he said, “trying to completely clean all the marinara sauce off of each noodle in a bowl of spaghetti.”

I chuckled.

He apologized again.

I consented to a second surgery.

21 days in ICU: a journey on sacred ground – Day 5 in ICU

The first night mom was in ICU she was in a “state of delirium.” She could answer questions like “do you know where you are?” and “What is your name?” But She didn’t understand why she was in ICU, didn’t understand they had used the paddles on her chest 3 times in attempt to regulate her heart beat, didn’t understand why I wouldn’t help her get out of there and didn’t understand why she had to have all that shit on her- all the IVs, the blood pressure cuff, the tube in her nose. She hated that shit on her and was constantly trying to pull it all out.

She was still in so much pain from the constipation and was being treated with very small doses of morphine which made her very drowsy (and also contributed to the constipation). When she wasn’t sleeping she was either yelling or crying out in pain,

“Oh help me!” “Please, please help me!”

Or she was plotting her escape. A CNA was by her bedside 24hours a day because she would try to pull out her IVs and get out of bed. Mind you, her left ankle was still recovering and she was to be “non weight baring.” She was crafty and even described as “spry” by the nurses and CNAs. She’d developed a plan where she’d request a bedpan which the nurses were very excited to accommodate because we all knew if she could just poop she’d feel so much better. Except that mom didn’t really need poop. Her plot was to request a bed pan and then when the CNA and nurse would assist her to get on the bedpan she would wrap her hands around their arms and try to use them as leverage to lift herself up and then angle herself toward the bedside. An attempt to somehow, using only her arm strength, propel herself over the rail of the bed and then…..run? It’s hard to say what mom’s master plan was but it was clear that she was determined to get the fuck out of there.

At times the pain was so intense she’d cry out things like

“let me die quick….oh god…..oh god…..this isn’t me……let me go…..”

Even though my mom was so frustrated and unclear on what was happening she remained her sweet self. Every nurse or hospital staff that came into contact with my mom commented on what a sweet person she was. I remember one of the times she asked me to help get her out of there. I said,

“Mom, if I thought that was best, I’d be the first one to help you bust out of here.”

She replied with an abrupt

“Oh fuck you,” then quickly recanted with

“No, you’re sweet.”

I’m not sure she knew who I was at that time, but she knew who she was.

There were times when mom was “awake” but more peaceful. She’d hold her left hand up with her palm facing her and using her right hand, she’d poke at her palm with her pointer finger, as though she was feeling the texture of her palm, taking in the firmness and intricacy of each line. I thought maybe she was in a morphine haze and was perhaps “tripping” out on how her own hand felt. Or maybe the lines on her hand were moving? I said quietly to her,

“That’s a trip huh mom?”

She smirked and quietly responded,

“Yeah.”

Then a few moments later she said,

“You know what, I think my phone is dead,”

and she carefully tucked her “phone” in her bed beside her.

She’d pull her “phone” out now and again – poking at it with her right pointer finger. It seemed to bring her peace and comfort. I reflected on the comfort her palm/phone provided her. What was she typing? Who was she texting?

Mom became more and more sick over the next two days. Within 48 hours she was sleeping most of the time. No more strength to yell or cry or try to escape. Other complications had arisen- her heart rate and blood pressure were irregular. She was retaining so much fluid she was almost unrecognizable, an infection had been confirmed and she was now on a ventilator to support her breathing.

My mom laid there, eyes closed, unable to rouse, with her belly more distended every day and her skin stretched so tight from fluid that it was tearing in small sections all over her body. Like little paper cuts everywhere – and so, she “seeped.”

Meanwhile, she was still so constipated. They tried everything to relieve her. They pushed laxatives and mineral oil directly into her belly, they gave IV medications and so many enemas. Nothing worked. They did scans of her belly that showed nothing but blockage. They did scans of her head too because the delirium was extreme and they were concerned that perhaps she had experienced a stroke. Scans showed nothing.

Finally, after 5 days in ICU they did a second scan of her abdomen, this time using a dye that would create contrasted imaging. The contrast illuminated new information and now it was clear: mom had two perforations in her colon.

Emergency Surgery.

21 days in ICU: a journey on sacred ground – Welcome to ICU

November 4th, 2017

It wasn’t all that long ago that I was on the verge of being un-stuck – on the verge of everything falling into place after making my commitment to shake it all up and bring out my inner Badass. The change in my life that I committed to was imminent – I was impatient and anticipatory. I saw so clearly how the “big snooze” was trying to sabotage and I wasn’t going to let it stop me.

Just to refresh your memory, at that time, I had given notice to my job without having any idea where I was going. My boyfriend of 2.5 years had moved out of our home and my mom had fainted which led to a severe break in her ankle requiring surgery. Each of these events a signal to me that this was going to be a tough journey and also affirming I needed to make this trip. I kept moving forward taking steps toward my new life – and I could feel things starting to fall into place. My mom had been through a lot but was returning home after time in the hospital and then a rehabilitation facility. I had a job interview for my dream job and my boyfriend and I were working things out. Gosh, what a rough road it had been – those 3-4 weeks of discomfort. Those 3 or 4 weeks where I fretted about my job, mom and boyfriend. Yet, I made it through. Like the too-tight lid of a pickle jar that you’ve struggled to open, using all your strength while it remained stubbornly stuck, that suddenly slips loose liberating the lid with ease. It was all coming together. It was happening.

Except that it wasn’t.

After the ankle surgery my mom was prescribed pain pills that had a side effect of constipation. On September 17th, exactly 3 weeks after she initially broke her ankle, she called 911 and went back to the ER. She was experiencing severe pain in her abdomen. She sent me a text “back in hospital.” I spoke to her that night. Her voice, shaking with pain gave a timber unfamiliar to me. I spoke to her the next day and to her nurse. I asked them each if I should come down (I live an hour away) and be with her. They both said that wasn’t necessary and that she was in good care. I spoke to her later that evening – her voice still riddled with a pain I’d never heard in her before. We stayed on the phone without much to say to each other, as we sometimes did. Those calls where you just “hang out” with the other person, even if it’s just by phone. I told her that my puppy had been experiencing constipation too. She said it was sweet that my pup was having “sympathy pains” for her. She said that if the vet had any good remedies for Cleo (my puppy) to pass them along to her because she wasn’t “too proud.” I laughed at that and noted my mom’s ongoing sense of humor and optimism through the whole ordeal – fainting, breaking her ankle, surgery, rehab and now, unbearable constipation. Constipation so severe and painful that her voice shook and required extra effort to make audible sound.

On September 20th, I got a call from the hospital. The nurse on the phone spoke clearly and with a sense of urgency. “Your mom went into a-fib and was transferred to ICU; we need to put in a central line now. Do you give us permission to put in a central line?” Without fully understanding what any of that meant, I consented and asked if I should make the hour trip South to be with my mom. The quick response,

“Your mom is very sick. You should be here.”

As I drove I processed the fact that I was called to give permission on behalf of my mom. Was she unable to communicate for herself? Was she unconscious? What is a-fib? What is a central line? Unsure of what was to come, I made arrangements for my boyfriend to stay with my kids so I could be with my mom. I called my grandparents. I called my dad and stepmom. I called my best friend, Regina, or ‘G,’ and I called two of my mom’s best friends, Gloria and Lynda.

I didn’t shower or change clothes for the next three days. The consent for the central line just the first of many medical decisions I would make on my mom’s behalf over the next 21 days.