“Jesus turned around, and when He saw her He said, “Daughter, be encouraged! Your faith has made you well'”- Matthew 9:22… Card from my sweet friend Ciara
As I currently attempt to do this post I am resting in my hospital bed with my heating pad surrounded my momma and my aunt. We are focusing on good vibes only! I was re-admitted to CHOW Thursday night due to worsening symptoms and the need for surgical intervention as soon as possible. I am settling back into my hospital room.
Tomorrow at 9:40 AM I will be taken back to the operating room (OR) to begin my surgery to save my intestines and provide me symptom relief. The best result possible is I come out with just an ileostomy and a decompressed abdomen. I am really hoping they can do it laparoscopically and not need to make it an open surgery. We are not doing this to try feeds or oral consumption… It is simply to make me more comfortable. I am fortunate to have a team so knowledgeable about Autonomic Dysfunction, Neuropathic Pseudo Obstruction, Intestinal Failure, and so much more. For now my sweet momma and I will spend the weekend preparing. Today I had my CT study with contrast. I felt so sick from feeling very full. Since my motility is so poor, we started giving me the contrast yesterday. We met with Hematology and they have a good plan and to be prepared for transfusions if needed. I am very thankful that my surgeon will be Dr. Arca, the surgeon who did my operations in June. My anesthiologist, Dr. Rusy, is the one who has been giving me acupuncture treatments all summer. Dr. Sood, one of the experts of motility disorders, has been overseeing my care. It seems like I will have a pretty spectacular team guiding my body through the operation. You can be confident that I am going to have Coldplay blasting as I drift off.
I can honestly not say what I am feeling. I am currently spending my time sleeping or just sitting and daydreaming. My pain medications are at a very high level so the side effects are really hitting me hard. I do not like them at all… I honestly sort of hate them! Two nights ago I woke up with such severe pain I was sobbing hysterically… I never cry from pain. They gave me lots of morphine. I hope one day I can go without pain medications. I am hoping if my surgery is successful, I will not need pain medications once I am done with the acute healing stage. I hope and pray that it works and my belly will deflate. It is measuring up to be from 101 to 104.5 centimeters which is quite a large and round amount. Its hard to breathe. If I don’t need pain medications then I would be able to do some schoolwork.
Speaking of schoolwork, I miss school so much. I went in this week to pick up books and it made me so sad because I miss it so much! I was super medicated so it was very confusing as well. This school year will be spent mainly online with one actual class every day. I would love to be able to see everyone in the halls again! I have an amazing school community that constantly lifts me up. I can’t wait to be back to doing social activities outside of my home! I desperately want to be able to go shopping for clothing and actually be able to buy and try on items. I want to no longer be limited to pants with elastic waistbands and flowy shirts to hide my swollen belly. I want to be able to live a bit more. I want to be able to go home so I can work on setting up a cute school nook and go out and buy office décor. I want normalcy!
For the moment, I am just going to focus on resting and preparing for my surgery. I am hoping that my sweet momma will be able to post updates as I recover and get off the narcotics. Please keep my sweet sisters in your thoughts and prayers as we once again had to leave them at home. Tomorrow will be the start of a new chapter, hopefully with less pain and less distention. We got this!
Love and Hope to All,