As Long as I Never Go Through That Again

I closed the last blog post having finally gotten the mind frame of acceptance of my situation. 

Don't get me wrong, I still found the biliary drain and bag to be completely degrading. I hated how my body looked with a tube hanging out. I worried about the copious amounts of blood that came through to begin with, the crusting of bile around the tube on my skin, and the bile that was pouring out of my body into this none-too-subtle bag. I was just trying to convince myself that the next three weeks would be much easier, now that I could move without feeling like I was ripping my body open... when it happened. 

The tube, visibly longer after being pulled

My daughter accidentally grabbed the bag I was concealing the biliary bag in, from under the blanket I had draped around me. I looked at her in shock and tried not to panic. I told Hubs discreetly what had happened later. He agreed that I should call the I.R. department at the hospital. They said that as long as the drain was putting out bile, I was fine. I was cautious for two or three days, but did okay. 

Sunday arrived, and with it the cessation of fluids in my drain. :/ No bile. Oh, how I prayed and begged others to pray that it would keep working! I knew if it stopped that they'd have to adjust the tube. Hubs parents came to feed us and to be on hand in case we needed them. We had lunch, and then another massive attack came on. We called the surgeon on call this time and were told to get to the ER a.s.a.p., given the lack of drainage and the present attack. I was run through tests again, including another CT scan. If you've not had one of those with a tube painfully jabbed into an infected organ, I do not recommend it. 

It took hours to know what was going on. Night had fallen, and the grandparents took the girls off home with them. Then, the news I most feared in the entire world. The tube was only in at the very tip. I had to have a new drain place. 

I cried. 

No, that doesn't even describe it. 

Friends, my "girl in the E.R." persona is a woman who is polite and uses humor to ease personal discomfort. I do what I can to be pleasant and to make people laugh. When the attending physician told me that a new drain was to be placed, I was triggered into a vivid flashback of my first experience. The humor was gone. I flat-out broke. I emotionally shattered in that moment. I've been in pieces ever since.

I sobbed inconsolably. I could not be comforted for anything. I cried all over the room in the E.R. so loudly that the doctor sent the nurse in to offer a sedative. Tears trickled out of my eyes on the way up to my room. Of course, on this most personally devastating night, my transport nurse was a man of six-foot-six. I felt vulnerable and exposed as it was, but he had to notch up the height of the bed so he could push me without bending in half. 

Yup. I was not just feeling vulnerable, scared, and exposed: I was also at eye-level with all of the short people. Aaaand the hallways were full. It was a busy night. *sigh*

I got to my room and encountered the same lovely nurses who had taken care of me the last time I stayed a few days. Hubs ran home and brought me yarn. 

I crocheted snowflakes for my nurses, tearing up repeatedly while he slept on the long couch to my left. Whatever they gave me kept the sobs at bay, but my heart was troubled. That night made me realize that knowing what was going to happen and having to actively wait on it was worse than being suddenly thrust into the situation. 

My uncle had just two days prior gone in for a gallbladder removal, which nearly killed him because his gallbladder was also toxic. Knowing this threw a glaring light on the fact that my surgeon had been right to drain and treat me first. I tried desperately to be grateful. "You are alive. You are going to get well. This is hard, but it is the safest route. All things considered, this is the easy route. "

The morning came and with it a beautiful, tiny, thin, blonde nurse. She chatted with me a bit and then told someone in the hall that I had a great personality. I couldn't decide whether or not to be offended by that, as a woman of size. Hubs left to get his breakfast. While he was gone, my lovely nurse came back into the room and said, 

"They are coming to get you right now!"

There went the calm! I freaked all the way out, HARD. They were coming, and I was ALONE! No hubs to be my anchor, my rock, my advocate! A head full of trauma and fear and the knowledge that I. Will. Feel. Every. Bit. Of. This. Hell. I sobbed. I wailed. I begged to God. I flipped out to my family. I cried. I cajoled. I prayed. I sought for peace. 

Hours - yes, HOURS went by. They called up to say that I was going right away, and then left me sit for hours. My pain meds came and went. My anxiety meds wore off. My hubs returned. 

My pastor stopped by to tell me there was nothing I could do about it, so... 

I honestly couldn't wrap my mind around how that was supposed to bring me peace. I wasn't panicking bc I was afraid of what it would be like. I was panicking because I had already been through it and already KNEW what it was going to be like. I wasn't just fearing the future or not trusting God. I was having PTSD-like symptoms from a trauma that had already occurred! Thankfully, he did talk to and pray with us until I was in a better frame of mind.

My Daddy showed up, God love him, and then they finally came for me. I did 'okay' until I was in the operating room about to move to the table. 

They had let my hubs and dad into the O.R. with me. My husband advocated for me with the nurse to make sure I was good and out of it. He told her firmly that I had felt everything the first time, as I was awake for every moment of it. Her response?

"Oh, no you were not!" in a half-mocking tone.

My eyes locked with my dad's sweet, encouraging "you are going to be okay" face, and the tears sprang up. 

My mind whimpered silently back into his gaze, 

"I'm not going to be okay Dad. 

I'm already NOT okay."

I honestly do not want to relive this experience too much again, either. Suffice to say that my hubs and dad left the room, I got set up and they hit me with a LOAD of drugs. I again waited patiently for them to kick in. This time I talked the entire time so they could see and hear my level of consciousness. 

This surgeon - a different guy that before - tried to simply reposition my original drain. That did not work. It was too twisted. He said he'd have to place a new one (which I already knew, but I appreciate that he tried). While he was waiting for them to get the supplies he needed, I went into a horrendous gallbladder attack. It was so bad that I began to cry. 

The doctor and the nurses said, "We're not even touching you!" They thought I was just being crazy emotional or imagining fake surgical pain, or something. 

"I know!" I gasped, "I am having a gallbladder attack!" 

Again, the brute nurse who invalidated me before we ever started rudely spoke up, "How would you know?"

Oh, I'm sorry. Of course, your drugs were at such high amounts that my body should not feel them. Please, tell that to my aching body, will you? I have never felt more demeaned and belittled in my life. She made me feel punished for my body not responding to their meds the way it was supposed to. I have no control over how my body responds to these things. 

She continued to be rude to me as the operation went on. When the surgeon announced that he was finished, I verbally confirmed that. 

"You are done?" I asked, relieved.

"Yes, I am done." he answered.

"I love you for that!" I exclaimed, so grateful to be finished. 

Awake through the second procedure, and in so much pain.

Nurse Brute rolled me out to my waiting father and husband with a cheery, "She did just great! She was asleep the whole time!"

I was squinting at them, and shook my head no at my dad. 

"I was not. I've been awake this whole time. I felt everything." I said, trying still to be a voice for myself and stand up for myself as a patient who had felt her procedure, and NOT as some problem-causing mess.

"Oh, you said you loved him!" she quipped back. 

What. A. Horrible. Woman. 

Which is it, nurse? Was I asleep the whole time, or did you just admit that I was awake AND TALKING to you and to the doctor? Hmmm? 

I felt so invalidated, belittled, and unheard. I forced hubs to take a picture of me right then and there, to prove that I was still awake. 

(Continued in the next blog post)