I believe that the most important thing in life is being with the ones that you love.
That was the first phrase that came to my mind when I read my old blog post compared to the one that I am about to compose. My old blog post was full of the horrific events that occurred before leading to a beautiful ending. This blog post is essentially a twisted reflection of the last post.
On Nov. 28th, God started us on a journey that no one was prepared for. That day, I was admitted to the ED at American Family Children’s Hospital. I had spent the day feeling overwhelmed with intense neurological symptoms. It was that evening that we noticed the drastic changes that would forever change our path. It became clear that evening that the right side of my body had become dramatically weakened. We noticed my right side dragging when I walked. I could no longer lift my right knee up. I also lost the ability to smile with my normal upturned corners. My smile that still portrayed joy was now a flat grimace. My mom and dad were very alarmed and called Complex Care which was what led to our ED visit and subsequent admission.
What followed that evening was something that I was not prepared for. No one was. A surreal nightmare. In the following days, my weakness became more pronounced. Whatever was ravaging my body was thriving in a twisted way. Over four days, I lost the ability to walk on my own. I went from walking two laps around the floor with my mom on day two, to only being able to complete one lap on day three with complete exhaustion. On day four, no laps. No strolls. The privilege of walking was just gone.
It is amazing what one takes for granted. I had never imagined that I would not be able to walk again. In fact, when I laid in the hospital at CHW this past summer in complete intestinal failure, I found comfort in the fact that I could walk. I could be independent. I could do self-care. I could sit up on my own. I could write. This now is gone.
The team at AFCH began running extensive tests. Many blood tests. MRIs A two hour, seven attempt, spinal tap. Countless neurological exams. No answers. It felt like we were drowning. For a few days we thought I had Guillain-Barre. At first blush, one would think this was crazy. Another illness for me? But, at least with Guillain-Barre, there is a way to stop the progression of symptoms and reverse some of the damage. When we were told that the test were negative, we felt numb and fearful.
Week two brought the blessed presence of Dr. Meredith Schultz, a neuromuscular neurologist. She walked into the room and examined me for an hour. She looked at my eyes. The way they moved. The tremor in my tongue. The way that my muscles were wasting away. She looked at my hands for 10 minutes, noting the fine fasciculation occurring. She then turned to my parents and said, “I am very worried about your daughter. Very worried”. After that announcement, we began the testing which would reveal how sick my body was.
One of her first concerns was my breathing. Ever since my admission, my head pain had been excruciating. The initial thought was that there could be migraine pain involved. Morphine around the clock was not touching this pain. When Dr. Schultz heard of my head pain, she wanted to make sure I was breathing OK. After a pulmonary function test, we discovered that my muscles that make me breath and expel carbon dioxide were functioning at 17%. This was alarming to hear. And saddening. I now need a BiPap machine that forces air in and pulls air out. It is essentially a new set of muscles for my lungs while I sleep. The BiPap machine is quite difficult to get used to. It is an unnatural sensation to have air forced into your lungs and then sucked out. I also need oxygen during the day. And can I just tell you, that nasal cannula is mighty uncomfortable.
As week two progressed, so did my weakness. I could no longer get up on my own. I could no longer swing my legs over the bed. I could no longer support my own head. My muscles were just turning to mush.
Week three brought the continued twisting of reflections. The AFCH team was reaching out to experts in Ohio and California. The team at CHW was consulted. All of the hospitalists at AFCH met to figure out what to do. The result of that meeting left us with a new low in this journey. While the experts don’t know what is going on, they are speculating that my body is enduring the wrath of a mitochondrial or neuro-degenerative disease. There is no cure. There is no fix. We can only hope that this progression of disease will hit a plateau and I will not lose anymore mobility.
My beautiful sister, Claudia Rose, said, ” Mom. First she couldn’t eat. Then she couldn’t go to the bathroom. And now she can’t move” This has all happened in the last year.
So where do we go from here? That is the question that we work on answering everyday. The amazing team of Palliative Care and Complex Care at AFCH have taken the lead in providing me comfort. The first priority is pain management. I am now on continual morphine, along with extra doses as needed. I take a sedative at night so that the myoclonus ( muscle tremors/twitches) do not wake me. I rely on lidocaine patches on my feet to help with the burning pain that has continued to progress. I just received my first lidocaine infusion to also help with the burning pain.
Many people ask, what is the next step in this fight of the unknown? In my mind, the answer is simple: Joy and Love and Not Giving Up. The reality is another twisted reflection. I am now going home on hospice care with Agrace. They will provide us with an extra layer of comfort outside of the hospital so that I can be surrounded by those I love. The past thirteen months have been a raw journey of fighting to just have some semblance of normalcy. School. Family. Laughter. Friends. This is all I have wanted. Now, I will need to focus on the beautiful little things. Hugs from my sisters. Hearing their chatter after school. Seeing Boomer bark at dogs in the park. The smells of my mom’s cooking. The twinkling magic of Christmas. I want to be able to spend my time watching the people I love flourish and enjoy life. Throughout this journey, my only concern is for those I love.
I see signs of God all around us through the people that have touched my life. From the amazing nurses who have cared for me and fought for my well being. Nikki, Katie, Allie, Steph, Kelly, Taylor, Tessa, Luke, Nikki M., Virginia, Abbie, Angelica and the list goes on and on. The doctors who have never given up, even though things are bleak. Dr. Syverson, Dr. Carberry, Dr. Webber, Dr.Chelimsky, Dr. Basel. The palliative care and complex care teams, Kari, Julie, Carisa, Kristen, Jennifer, Katie…We have been so blessed that there are so many people trying to help us. Even if we never have an answer, we will forever be grateful for everyone’s tireless search for answers and for their loving care of me and my family. God has truly blessed us with all of these warriors. To our neighbors and friends who have helped in immeasurable ways. To my teachers who have never forgotten me and have included me in school even though I am too sick to go. I truly miss being able to walk through the hallways.
So now I am going to love each moment that I can be here. I will find joy in the fact that God has given me a way to look at life in such an intimate manner. Thank you for standing with us through each leg of this journey. We will not give up, even if the odds are against us.
I am proud of my body. It has fought really hard.
Until my next update, many hugs and love,
Isabelle and the Dunai family