Amy and our family appreciate your support and words of hope and encouragement. Thank you for visiting. Below is an overview of Amy Joy Thompson's story.
Many friends have asked about my sister Amy and what has happened to her these last few months. I have posted a bit on Facebook, but find it difficult to talk about since their is nothing positive about her story and outcome. It is a nightmare-- I thought I would piece her story together for those who are curious. Our family is so thankful for all your prayers and kindness.
In early October, Amy received a flu shot. Unfortunately, she entered the hospital with neck pain and paralysis of her hands three days later. An MRI diagnosed her with transverse myelitis. She was put on high dose of prednisone (steroid) and released in 3 days. An MRI illustrated the inflammation decreasing. She recovered enough and they started to lower the prednisone. She joined us for Thanksgiving and even watched my kids for parent teacher conferences. She had a few after-effects of the transverse myelitis, but nothing to be worried about.
The Sunday after Thanksgiving she went to the ER with abdominal pain. She was admitted and given morphine, but that did very little to stop the pain. They eventually did exploratory surgery thinking appendix issues. Nothing was discovered other than “possibly” an ovarian cyst and inflamed bladder, but they went ahead and removed the appendix "just in case". Unfortunately, she did not seem to recover and declined. Eventually, she lost all movement in her legs and hands. Finally, an MRI was ordered 5 days after she entered the hospital. It determined massive swelling of the entire spinal column. The transverse myelitis was back. This, is what was causing abdominal pain and the reason for an inflamed bladder. She was quickly moved to the ICU and the doctors put in transfer orders, because they knew they were in over their head on this case.
Therefore, one week after she arrived with abdominal pain she was transferred to the ICU neuro spine floor at Northwestern Hospital in Chicago. The transverse myelitis with additional Lupus complications was attacking her spine causing inflammation/lesions up and down the entire cord. (C2-T12 for those that understand the spine) In addition, a little bit of vasculitis (swelling) in her brain. She was treated with plasma exchanges, high dosages of steroids and a chemo drug, cytoxin. In addition, when she arrived, she was in respiratory distress and was put on a ventilator. She hates the tube down her throat, but would never had made it through the night if she wasn't intubated. During this time it was up and down… one day she looked like she was slowly dying and the next day she was communicating with us by spelling out letters on an alphabet chart. Every day was a medical challenge…infection, blood in stool, extremely low white blood cell count, EEG for possible seizures, bed sores, high blood sugar, paralysis, cold feet that she cannot move to name a few….. It takes time when it comes to inflammation in the body to settle down and start healing.
My older sister, Paula, flew in the first week at Northwestern Hospital in Chicago and then returned during her holiday break for an additional 2 weeks. We spent Christmas with Amy in the ICU and had Subway for dinner. What a December to remember-- or rather forget!
Amy continued on a ventilator/ feeding tube for 2 1/2 weeks in the ICU. As the inflammation decreased she became more medically stable. The goal was to get her off the intubated ventilator and breathing with a mask. Unfortunately, nothing is easy with Amy, so she received a tachometry/ventilator and a stomach feeding tube. This added another week to her time in the ICU, because her care was still so demanding. She now has a tracheotomy with ventilator, feeding tube, almost completely paralyzed (she can lift her arms and point with one finger on her left hand— that is all the mobility she has), bladder and bowels shot, no voice and has terrible “phantom” sensations (throbbing and always freezing cold) in her feet that she cannot feel. Her body is extremely weak but she has a spirit of determination. She is alert and communicating with us. Her mind is still there…. and she asks a lot of questions about everyone around her.
One prayer was answered on January 5th. She was waiting at Northwestern Hospital to be moved to a rehab place. Unfortunately, there are limited vent beds and we thought she was going to have to remain in there for a few weeks. A ventilator bed opened up at RIC (Rehabilitation Institute Center)— yeah prayers answered. This is one of the best rehab centers in the United States, so we are glad she is able to now receive speech, occupational, and physical therapy. She now has something to fill her days instead of laying in a hospital bed.
My parents visit her for a couple days during the week and I try to go as often as I can. Her moods change throughout the day and it breaks our hearts when we leave and she is crying. She is working hard at therapy and is glad the new television season has restarted. Transverse myelitis, Lupus and flu shot may have destroyed her body but her mind and spirit are still there. Please keep praying.
This last week, we had to inform her that she is too medically demanding for my parents to care for her at home. She was devastated. Her goal is to get "home." Unfortunately, she would need a full time nurse for 24 hr care and my parents cannot afford this. She will have to be moved to a long term care facility hopefully close to Batavia, IL. Unfortunately, we don’t know if many facilities will take her on.
Currently her release date from RIC (Rehabilitation Institute of Chicago) is February 23rd. Please pray that she is accepted into a caring and close to home facility.
During all of this crisis we have experienced unbelievable kindness. Nurses, therapists, hospital workers, doctors, waiting room families, strangers in the elevator, our family, neighbors and friends who have offered their hand and support. We are so very grateful for the blessing of such kindness and love. My mom always says, “There are angels among us.”
I am sorry to share such a devastating story. I want to thank you for asking about her. We are blessed to have so many friends who are concerned.
Thank you again for your support and prayers.
Julie McNamara and family
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