“…Its a Miracle…”
“The Lord is close to the broken-hearted and saves those who are crushed in spirit” Psalm 34:18
I think even the strongest people have moments where enough is simply enough. Our spirits are so strong but we all need moments to just breathe. To heal for a moment. To live with a fresher breath of air. To be able to look at those around you without wanting to sob and scream for help. To be let free. Today, my mom and I were given the gift of doing just that.
Around six this morning, both my mom and I were awake and full of nerves. I was going to be transferred to the ICU around seven this morning. After exhausting every option to make my intestines empty themselves it was decided we were not going to give up, but take a leap of faith. Dr. Chelimsky decided to transfer me to for careful monitoring and administering the medication Neostigmine. It is an extremely powerful medication that is used to drastically increase muscle strength by targeting the nerves and muscles. It is so strong it can reverse medically induced comas. Once I got transferred, I was able to settle in and spend some time listening to my grandparents that traveled up to visit me from Oklahoma and my aunt from Milwaukee. They gave so much love. I then hugged them all goodbye and watched as I got hooked up to my monitors to begin the infusion.
I think after a certain point of struggling you are willing to do anything. Earlier on, when I just had Gastroparesis, I was ready to go through a gastric pacemaker surgery any day. Then, I was willing to have someone fix my small intestines when I no longer tolerated NJ feeds. Then, I was willing to get an ileostomy to give me relief from my symptoms. It was so shocking to hear from the surgeons that at this point my officially confirmed Pseudo Obstruction was too severe to gain any symptom relief from surgeries. Not even an ileostomy or a pacemaker. I honestly began to feel myself hurting emotionally. I have been in the hospital almost constantly since May of this spring. My wonderful friends and their mom came to visit me the other day and I could not help but break down crying. We all began crying. Going through such trying times brings out the struggles in life. So when they said that we could try the Neostigmine in the ICU, I was ready to give it a shot. After all, I want every last fighting chance I can give. I have been fighting like hell and I was not planning on stopping anytime soon.
For the first hour and a half of the infusion I felt nothing. I had no idea if it would work or not. I had read in patients with normal GI systems it causes incredible intestinal cramping, vomiting, large bowel movements, and so many other hard symptoms. So my mom and I were prepared. I have gone over a month without passing any gas or stool on my own. That is an incredibly long time. Too long! As I was thinking about that, I felt the medication kick in. What happened next was nothing short of amazing. I was able to make my intestines work for a moment. After I used the restroom I almost fell over from the shock of what I was seeing. Ribs and hip bones. My abdomen was totally flat. Totally flat!!!
My abdomen has not been flat since June 20th. And prior to that, it hasn’t be truly flat for a very long time. The only reason it was flat on June 20th was because that was the date I had my series of operations where the surgeon was able to decompress my gut. And today, I was standing with my normal body back. I was no longer swollen up to 9 months pregnant. My feeding tube was no longer being forced out of my body from the pressure. My back was not having to curve inwards to support the intestinal weight. And I could lay down and actually breathe. Breathe without my failing organs pushing into me. My mom and I celebrated like crazy. We paged all of the doctors and the nurses and everyone was simply in shock. Dr. Chelimsky came in and she stopped mid-hand cleansing because of the sight before her very own eyes.
She sat down with us and hugged me for a long time as we just rejoiced. I will never forget her say “It’s a miracle”. We just broke through a glass ceiling for patients with full GI tract failure and Pseudo Obstruction. She said how amazing this is. We discussed how the timeline of all of my health declines have been with prednisone tapers so we agreed to keep up with the high dose steroids and IVIG. We discussed how the autoimmune disease is for sure manifesting these things. After all of that discussion I could not help but ask her “Is this officially confirmed I have Pseudo Obstruction”? Her answer was simply yes. I have severe Pseudo Obstruction of my whole digestive tract. She said how she saw it progress from my stomach, to small intestine, to my colon, to my rectum. This disease managed to tear my body apart, but today I was able to see a glimmer of what may be to come for warriors that are TPN dependent like myself. If I continue on this track, she will be able to submit to a medical journal how this treatment worked.
Now after all of that, you are probably wondering: What is next!?!? First, I will just revel in the joy of having a normal flat tummy, even if for a day. And next, well I will tell you. In these upcoming days we are going to try transitioning me to that same medication but orally or through my feeding tube ports. Then at an incredibly slow rate we will try to get feeds. Even it if is 3 mLs through my J tube it is something. I am very thankful we will not push my body’s limit this time and do it incredibly slowly. That does mean I will be in the hospital for a bit longer. I will just have to find more ways to occupy myself, crafts are my hobby, so I can keep the days happy. And we will continue to fight the autoimmune process with IVIG and prednisone.
I cannot help but feel rejuvenated. I truly believe that everyone’s prayers lead the medical team and my family and I to this moment. I was reaching a point where I could not help but mentally fall to my knees and shout for God to save me. To show me the light, and He did. He rescued my soul. Thank you everyone for praying and sending me good vibes. Please do keep them coming. I truly believe I would not be here if it was not for all of you. Please pray for all of the others suffering in this world. Please pray for my doctors to continue to bust through cement walls. Please pray for my sisters to find some normalcy with not having my mom or myself at home. For my parents to feel some peace. For my friends to not worry. And I will pray for God to do the glorious things He has done to me to each of you.
When patients are diagnosed with the progressive diseases, some doctors will stop after a certain point. They will say that they have medically done enough. I will never say that enough is enough. Dr. Chelimsky declared to me that we will never ever give up hope. My GI doctor in Madison, Dr. O’Connell, is relentless in seeking out relief for me. My family and friends are constantly lifting me up. And that is what we all will continue to do.
Today I felt an even larger spark of hope. It ignited my whole spirit. I will never give up. Never ever. I will hold onto hope as long as I freaking can. We will beat the odds. We will crush statistics. This is my fight, and I am just getting started.
Love to everyone and Blessings,