Jean Violet Medical & Family Support

Dear people, whether friends, family, or strangers.
          This message you're reading here is one that proved very difficult for me to write and put out into the public eye. I am Jenica Jacobs, mother of an indescribably strong & amazing 3 year old girl, Jean Violet Ewell. Father is Daniel Ewell. 
        On May 17th of this year, a stroke of horror hit our small family. Our daughter had a spontaneous twist in her bowel, resulting in an emergent situation that came out of nowhere. My baby has a little tent in her bedroom and that night she just crawled into this tent and wouldn't come out. I could tell when I went into the room and peered down in at her that something was very wrong; her face was white with both fear and pain, & she looked through me at the same time. 
         We got to an emergency room as fast as time allowed... though we had no idea what the future held for us at this point. Our girl was having extreme difficulty breathing, it was super labored and she was falling in and out of a strange state of sleep as her circulation was effected by the twist in her bowel. A CT scan showed us just how serious the problem was shortly after our arrival at the hospital, & another bit of time past that and we were told we would be life flighted to Primary Children's hospital in Salt Lake City. This twist in her gut drained the life out of a large portion of her insides; upon arrival she was rushed into surgery. The doctor told me that the situation was extremely atypical, and that until he was able to open her up and really get a good look at what was going on we wouldn't have a few of the answers we obviously needed. He conveyed to me how serious the situation was though, & the words that I liked the least shortly followed. He said, "Ms. Jacobs, I need you to know now before I go into this operating room that this, simply put, is a non survivable situation. I'll do everything in my power to help this girl but that's where we stand."I was still alone at this point, as her dad Dan and other close family members were en route on the ground but still hadn't arrived. That night as I flew through the air with my baby fighting for her life, I realized that until that point, I had never really experienced fear. We flew through a stormy sky & I looked out the windows at the night, trying with all of my soul or my spirit, whichever, to let my girl know somehow that I was right there with her. I was a new version of myself when we landed. I was told later that we almost lost her more than once during that flight. I had no idea how much my life was about to change following this insanely abrupt nightmarish series of events. Back to the conversation with the surgeon though... He stated he was anxious to get in and get started; I of course felt the same although I was in a sort of removed state. The only thing I could see was my baby. I was frantic, signing the forms and staying as close to my child as I could, yelling words of encouragement and love through the doorway of the OR, my hand reaching for her outstretched hand as she was being prepped for this procedure that would hopefully save her life. We looked at each other up until the doors closed between us, then I was alone. I just stood there. It was 4am, and my world was upside down. The first surgery resulted in her losing most of her large intestine, and in the next surgery the next day she lost the rest of her large intestine along with part of her small intestine. She was admitted to the pediatric intensive care unit and was intubated and placed in a medically induced coma immediately as well as being medically paralyzed. She stayed in that state for nearly a month, having 3-4 exploratory procedures a week, washing her abdomen out and guiding her doctors in figuring out what could be done for her situation. Adjustments were made as things moved forward like having the end of what was left of her bowel through her skin creating a stoma, so she could have an ostomy bag over that and closing her rectum for the time being- unfortunately, things got worse. She contracted parainfluenza, which effected her lung function and oxygen saturation, putting her at risk for brain damage and even death. At this point the doctors decided to put her on ECMO, an intense emergency life support machine that pulls the blood from her body and oxygenates it for her before pumping it back into her body, bypassing her need for lung  function. (this machine also has the ability to control blood temperature).  The very next day her lung collapsed and if not for the ECMO machine we would have lost her. Too many times she almost slipped away, but she kept fighting through time after time. She stayed on ECMO for a total of 9 days before she was well enough to oxygenate her own blood and have the catheters removed from her neck. Unfortunately they have to thin your blood while on ECMO to keep it from clotting in the machine while being oxygenated. This made it impossible to perform the necessary procedures that she required for her bowels. Leading to two holes forming in her intestines. They were able to sew up the smaller of the two, but had to make what is called a fistula from the other, connecting the hole to the surface of her belly, creating in essence another stoma and ostomy to hopefully create a place for drainage to occur. She was in the ICU for almost 60 days total. 
We have since been residents of the children's surgical unit since she is no longer fighting just to stay alive but to recover. Facing the struggles of learning to walk again and regaining her fine motor skills after being in the medically induced coma and paralysis while she was intubated.  When she came out of the coma she could not even stand up with assistance. She has a very long road ahead of her and us for that matter as this situation is not easily or quickly resolved. We have been here for over 4 months already and have optimistically another 3-4 months left here. This has put an enormous strain on our family in every way immaginable, mentally emotionally physically, spiritually, and financially. This girl needs a whole lot of love, comfort and support . She is currently unable to eat or drink anything whatsoever, which is an incredible challenge for all of us. She currently gets all of her nutrition through her iv via TPN. This has been very hard on us as none of us has been home in months now because we live so far away, this has put us in an impossibly tight spot financially. The stresses currently seem endless. 
So as hard as it is for us we are asking for help even if you just help us by sharing or forewarding this message, anything and everything is greatly appreciated. 
This girl is a fighter and an inspiration for us every day. Thank you so much for your time and support, as this is the most difficult situation we have ever experienced. Things are so much different than we could have ever imagined being in the spot we're in;  there's nothing we wouldn't do for this kid. 
    Again we are beyond grateful for any support sent our way in any way, shape, or form.  Saying thank you could never really capture our gratitude.      
                           -Daniel Ewell & Jenica Jacobs