I have been home now for a little over a week. Being home has been very nice. Its been a massive amount of adjusting and organizing supplies. We have been doing lots of practice with my new medical needs and requirements. We are very thankful for the UW Home Health Nurses and their consistent care as we get comfortable with everything. It is very stressful to transition out of the hospital to home but I think we are close to making it over the roughest part of the road to home.
I viewed coming home as being healthy and doing things with friends late at night, having teenage energy and plowing through my day. This has been my usual state at home. However this time coming home the only difference from the hospital is I am no longer in a hospital setting. I have been struggling quite a lot lately. Physically my body is very sick and weak. My muscles shake with doing the stairs and it is exhausting to simply walk around. I spend my days confined to my school desk in the dining room and all of my extra energy is spent simply making extra trips to the restroom and to grab my medications. All I can manage to wear are some easy lounge clothing items that keep my cold body warm. I black out each time I stand and one day I passed out three times. My pupils are constantly dilating and causing blurry vision due to the severity of my Dysautonomia. Not only are my muscles becoming increasingly weak but my energy level is very low. It is physically hard and exhausting to breathe now. I can no longer do lots of laughing or crying as it impeded my ability to breathe. My fingers change color as I walk. My body is fighting beasts of diseases right now so it is constantly going. I am thankful for its resilience but I want to be able to function like a normal teenager, like the old Isabelle.
I am a bit over two weeks post operation from getting my ileostomy. Each day I struggle with adapting to it. It is a very violating feeling to know someone pulled out part of my insides. Bag changes are full of anxiety and fear. It does not help that I am up at least four times a night needing to care for my ostomy bag. I am just thankful I am no longer gagging or sobbing when I work with my ileostomy! I had immense hope for the ileostomy. We all did. The goal was if it continued to decompress me I would be able to start feeds into my small intestines through my J tube and one day begin trying oral intake as actual nutritional purpose, not just for the pleasure of the taste. I had hope it could possibly help me lower a bit of my TPN dependency. As I look over it all now, I can see that my colon is no longer to the point of perforating. However in images it is still swollen and full, my motility simply cannot take care of its functions. Since I have the ileostomy, we are thankfully no longer using my colon. My lower back pain has also gotten so much better since relieving the colonic pressure.My motility, however, has declined even more.
My Pseudo Obstruction has continued to ravage my body. I can no longer tolerate any solids by mouth. Pills are a challenge and medication time is something that makes me fearful… Sometimes causing me to want to skip my important medications. My Gastroparesis has become even more severe than before. I can only tolerate thin liquids (such as iced coffee) with medications to keep them down and avoid ulcers. It breaks my heart to not be able to enjoy the simple pleasures of eating by mouth. It takes everything to not grab a bite of a cracker or a simple square of pizza. Some days my desire overpowers me and I have something. I am then left super ill all day long… Its a vicious cycle. It is something I totally took for granted before all of this, eating. I am woken up in the night from intense Acid Reflux. It continues throughout the day causing me to have a sore throat. It is super painful to feel my stomach contents burning their way up my throat. I am dependent on my G tube to empty the contents my body is storing. My abdomen still becomes massively swollen whenever I consume liquids and my pills. It becomes even more big and unbearably painful if I try a small bite of a solid. I am now woken up yet again throughout the night from my abdominal pain. My TPN calories were even increased as I currently totally depend on it fully for every drip of nutrition. I only have about 3 hours off of my fluid and TPN pumps. I am still trapped with struggling with my swollen belly and the pain and incredibly intense nausea. My nausea comes in waves that completely immobilizes me. It feels as if we are constantly racing against a clock of symptom progression.
Not only am I physically struggling but this is all very challenging emotionally. I desire to be free and embrace being seventeen. I want to be at school full time. I love school. I love seeing my teachers and principals and working with my other fellow students. I miss hearing the typical whispers of conversation in the hallway. I wish I could be spending time preparing for homecoming, not looking into case studies on Intestinal Failure. I want to be achieving normal milestones as a teenager. I want to be able to wear whatever clothing item my heart desires. I want to have the energy to simply do my hair and play with a bit of makeup.
My beautiful friends, family, community, and God are all getting me through this. Sometimes when it all becomes to much to process I raise my worries up to Him and pray that He provides me guidance. I am just going to cocoon myself in the security of the people who love me. I deeply and dearly miss my nurses at CHW…Sweet Virginia, Nikki, Abbie, the whole team… I also miss my beloved family back at AFCH. My spectacular primary nurse Nikki, Allie, Katie, and so many more. My home health nurse Sarah (who simply rocks)… Dr. Chelimsky who is still striving to stop my decline. To my sister Claudia who embraced me and lifted me up as I changed my bag and cleansed the separation wound from my ileostomy. She made me realize it is a beautiful blossom… Not something to be disgusted by. All of the amazing residents I have met… They are aspiring to be the future of doctors I pray have the cure for patients like myself. Its in the moments of immense despair like right now that I am thankful for everyone I have met on this journey. They help care for my tender soul during this bittersweet time.