Tuesday, January 23, 2018

The Whole Story

Chapter 1: Ischemic Bowels 

"If you lose a spouse, you're called a widow or a widower. If you're a child and you lose your parents, then you're an orphan. But what's the word to describe a parent who loses a child? I guess that's just too fucking awful to even have a name."- Six Feet Under "Life's Too Short", Season 1, Episode 9, 2001. 

Emilia Josephine Johnson was born on August 4th, 2017 at 2:44 PM. She lived for 88 days and passed away on November 1st, 2017 at 8:11 PM. I did everything I could to protect the two ladies of my life. Unfortunately, my protection can only go so far, and the rest is in the virtual hands of God. 
Emilia was an incredible baby, to say the absolute least. Despite having a tube down her throat, tape and tubes on her face, and cords stuck all over her body, she still was very observant, very loving, and very communicative. She had great strength, as well. She could kick things laying down and send them flying across her crib.  
Emilia had the kind of personality that would light up a room. Everything about her was bright, vibrant, and colorful. Her bond with her mother was as righteous as it can get. When Nikki would come into Emilia's room, she would get excited and you could literally see the room light up. It was a sight to see, watching my ladies' animation color the environment with their emotions and feelings for each other. It was the best experience of my life. 
Emilia's mother, Nikki, spent 5 weeks in the hospital after her amniotic sac had ruptured, keeping baby Emilia in the womb as long as she possibly could. When she was first admitted, she had been rushed to St. Vincent Providence after severely bleeding at her job. When she arrived, Nikki was told that Emilia would only be in the womb for a few days. Nikki was only 27 weeks at the time. She managed to hold Emilia until almost 32 weeks. 
When Emilia was born, she weighed in at 1 pound, 12 ounces. She was considered a micro-preemie. From her day of being born, she started growing and recovering quickly. It was phenomenal, to say the least. We spent 86 days with her, watching her develop with features, eating, weight, communication, and nurturing. It reached the point where she was doing so well, that the doctors wholeheartedly advised that we do a g-tube surgery, so we could take her home. But there were underlying issues with Emilia that the doctors overlooked. Nikki and I both had our instincts telling us that surgery was a morbid move. After a week of pondering the surgery, and another week of postponement, we finally caved-in to the surgical recommendation. 
We realized that Emilia's treatment of development was detrimental at the hospital, and many issues could have been prevented. Emilia was fed 500 ml of food in a 24-hour period, with 50 ml every 4 hours. She was on Albuterol for her lung development. She was on Seldenophine for vascular hypertension. She was given prune juice every feeding and a fortified vitamin. She was on CPAP and then high-flow oxygen. Emilia was slowly taking 5-10 ml of food by bottle per feeding, with high numbers of 27 ml etc. She was making slow progress. 
 There was a noticeable problem with Emilia's bowels. One physical indication is how much she arched her back when she needed to pass her food or pass gas. Another indication was how much and hard we would pat her lower back and rub her stomach area where her intestines were. Her stool was always dark. She had constipation and diarrhea. She would spit up and vomit after almost every feeding. She had a feeding tube from her nose to her stomach. Many times, she would push back up a significant amount of food. The nurses would literally plunge the food back down through the tube, and then fill 50 ml of food right after. They were overloading her with food. She also was always warmer than normal, she had a high temperature, and she was sweaty and clammy a lot. The nurses would routinely put blankets om her, without checking to see how her body condition was. She was also, very restless. We were told the g-tube surgery was almost risk-free. We still had bad instincts about the surgery and waited a week to try to help Emilia progress with bottle feeding. After a week of slow progress, we felt the pressure of getting the surgery. We agreed to have the surgery, with the intention that we would have her home soon after.  

10/30/2017  

The night before the surgery, a nurse named Kristen tried to stick an IV into Emilia twice. When it didn't work, she brought in another nurse named Carol, who tried again twice. Then they brought in another nurse named Kristy, who tried another 2 times. After Nikki and I decided that was enough, and our child was crying hysterically from being poked 6 times, they brought in the NP Emily. Her and Kristen talked us into trying another couple times. I told them both that if this doesn't work, I will go up the ladder about their professionalism. Emily tried 2 more times, but it didn't work. Emily said she couldn't get the needle in because she was "shaking like a leaf because of how upset we were". Kristen said it was because she "was too sweaty and strong". I said I didn't care, I've been in these situations in the military, and there is a level of responsibility and professionalism that needs to happen in life and death situations. After they did all of the poking, Emily and Kristen bombarded our child in "consoling". That part may have been the most disturbing. Feeling defeated and obviously searching for a way to calm us down or give us some sort of resolution, Emily turns to Nikki while holding a hand on Emilia (who is screaming from the IV search) and gives her a matter of fact ultimatum. She (loosely) says," Well it looks like we can either keep trying and I can call Dr. Novack to see what he suggests we do or we just postpone the surgery until a later time." And automatically Nikki responded with, "Okay, let us postpone the surgery then, this little girl has been through enough for a while." 
After this, Emily contacted Dr. Novak, and he suggested Pedialyte for the time being until everyone came in at 7 AM. Emily mentioned that that may be the better option than postponing the surgery because of how many people will show up at the hospital expecting to do their job for this surgery and it would be unfair of them to not have anything to work on and to find out at the last minute. We finally gave in and said okay and agreed to proceed. We felt guilt tripped into the decision. Emily and Kristen left us to be with our child alone. After a few minutes of consoling Emilia ourselves, we left the NICU temporarily to take a walk outside to clear our heads and process what was going on. When we came back we noticed Kristen by Emilia's bedside with her arms in the crib doing something to her with her back turned to us. When we both came back and walked in and she immediately stopped what she was doing and just looked down at Emilia. We were all silent for a few minutes before she stated that she needed to get a feeding ready and left us both alone. She never told us what she was doing in her room in the first place. When she came in to hang and help with the Pedialyte feeding, it was uncomfortable from the moment she walked in. She didn't say anything, didn’t apologize, just stayed completely silent and almost robotic-like attended to Emilia's feeding duties. At times she would just stand next to Nikki awkwardly silently staring at her and the baby, then turning on a dime and then leaving.  

10/31/2017 

We kept getting asked by the nurses if the anesthesiologist had come in to talk to us about the surgery and they failed to do so up until the minute of said surgery. At 7:15 AM, when Dr. Novak came in, Nikki and I stated that we wanted to postpone the surgery. Dr. Novak's argument was that we should still go forth because the surgeons would come in for no reason and no work, and be upset. Basically, they still pushed a risky situation for income and profit. He also explained that Emilia's veins were too thin because of the Albuterol she was taking. Around 7:30 AM, Emilia was poked another 3 times by Karen and Anne. That didn't work either. A total of 11 failed times that they tried to get an IV into steroid baby veins. They were able to get an IV into her after she was sedated, before surgery, but that ended up happening in the OR ultimately. The surgery itself took less than 15 minutes. They said her statistics were great as soon as they "opened her up". She was doing so well that me and Nikki went home for a few hours to rest. 
We returned around 6 PM. Jasmine and Rose had to put on a high-flow CPAP because her stats were starting to go down. Jasmine also told Nikki that Kristen had told the staff at their meeting that she was so traumatized by Nikki's reaction the night before that she "didn't know if Nikki was going to hit her or start crying and losing control."  
First cardiac was at 8 PM. Heather the RT and Rachel the traveling RN were on duty that night. I was gone when this happened. When I came back, Dr. Rogers was in a Wonder Woman costume, and assured us that Emilia was fine. She pressed on her hip pressure points and Emilia looked like she reacted to her touch. Her eyes and muscles were given a spark through her sedated state. 
 
11/01/2017 

Her second cardiac arrest was at 5:20 AM. Medical practitioners present were: Heather (RT), Rachel (RN Contractor), Nurse who took charts (brown shoulder length hair, short, late 20's). Rachel immediately did chest compression's and Heather administered hand-bagged oxygen. Rachel eventually asked "where the extra help was because she shouldn't be calling the shots right now." Dr. Rogers showed up after 5 minutes of resuscitation 
After the third cardiac arrest, time is unknown because by then we were seriously traumatized. By then, Dr. Novak said there was an overload of potassium during surgery. By then, they wanted to do an "exploratory surgery" to see why she kept having heart attacks. After her "exploratory surgery", Dr. Pippis left her intestines out to watch for any dying tissue. He and Dr. Novak told us that they had the top people in multiple fields come to assist in her surgery. We never met any of them. Nicki and Meagan were Emilia's nurses after surgery. Emilia's bowels went from pink to purple in a few hours. Only Dr. Cheung came in after a couple hours and assessed that we "should pray". There wasn't a doctor around between surgery and the time her bowels fully failed. 
Her fourth cardiac arrest was at 5 PM. I was checking on my home at the time. Nikki remembers the nurse Ruby saying that "Emilia's hand are cold as rocks." Nikki then asked Dr. Novak why she would say such a thing at such a time, and he covered for her and changed the subject. I was back at the hospital within 20 minutes. By this time, her hands and feet were turning blue. Dr. Novak said that this was her "body trying to preserve the brain in critical stress". She had 5 IV tubes, including one on her forehead. One was for morphine, insulin, bi-carb, fresh frozen plasma, and 2 blood transfusions. Her intestines were still out. It was literal horror. My child looked like an "exploratory surgery" gone wrong. 
Dr. Pippis came in around 7:30 PM and told us "there was nothing we can do and we will have to let her go". Him and Dr. Cheung then proceeded to lie and backtrack about how they still never found any perforation in colon. By that time, many nurses were around, as well as other staff. Dr. Pippis apologized and I pretty much went out of my mind. I heard my mother and Nikki both crying in tones I had never heard before. They were tones of distress and anguish. I ran over to Nikki, who was at Emilia's bedside. She was crying and Dr. Pippis was holding her hand from the other side of her bed. He kept saying he was sorry, and I started crying and wailing uncontrollably. Then Dr. Pippis walked out and patted me on the back. Then Nicki suggested that we hold her before we let her go. The concept itself was devastating. Somehow Nikki managed to hold Emilia for about 60 minutes. Then I held her for quite a while. There was a huge amount of staff present by then, and a priest said his final passages to Emilia. Nikki remembers nurses joking around with each other while our child was passing. Then Nicki asked all the staff to leave so we could be alone with our baby girl. I refused to let her go. Then they turned off her machines. We said our goodbyes and put her back in her bed. By then, we were horribly distraught. After she passed, nurse Meagan asked if we wanted her dressed up, foot and hand prints taken, and pictures. Nikki and I both repeatedly requested they do not do any of these things.  
           The whole experience was more than enough to stand up against this evil empire and expose its true purpose. We put our trust in to an organization that is supposed to "first do no harm". We had a bond with Emilia that is beyond this world and that cannot be taken away. Emilia lives with us every moment, and it's for her that I write these pages.

Hypocrisy Soup for the Soul

Hypocrisy Soup for the Soul   Nikki and I are two people who have so much in common, it's a story that should be told becaus...