“… a year of deterioration…”
As we finished up meeting with my gastrointestinal doctors today, my main doctor brought up how this has been a year full of deterioration. I have firsthand experienced the truth of this statement, but hearing it causes a sting of emotions that is far too painful to process. This day marks day 18 of my ongoing hospitalization at Children’s Hospital of Wisconsin. It has ranked highest amongst the list of challenging hospital stays. Since I last had a chance to update my blog, many things have changed very quickly. I have had to deal with the raw consequences of my disease enduring a worsening Chronic Intestinal Pseudo Obstruction flare along with an ileus. The combination has left me with an increase in the severity of my daily symptoms and the manifestations of my intestinal failure. It has been days of dreaming of returning to my baseline. Since being admitted and the time spent at home before my admission, it is now five weeks of feeling very ill. I have been hooked up to suction from my NG tube, free drainage from my G tube, half of my medications stopped due to the volume, dealing with no medications absorbing enterally, and needing heavy pain medications due to my severe distention. I have gone down to the OR already to work on an obstruction of my ileostomy. This Friday, I will be heading back down to the OR to be put under general anesthesia and try an experimental Celiac Plexus Block to try and manage my pain control.
During this stay we have been trying to figure out plans as what to do. Today, we discussed our long terms goals and the main focus of quality of life. I am thankful I was able to express how my education, being home with my loved ones, and having decent symptom control are what allow me to thrive even if we cannot cure me. Short term, we are looking at a long road before I can be discharged. There are many hoops to jump through: NG suction, pain management, measurements of outputs and inputs, medication absorption, and much more. Long term, we are looking towards what will help me live outside of the hospital. That means the next step down the road will be to pursue a multivisceral intestinal transplant. Those surgeries are not common and very intense, and involve a long road to even be evaluated and put on the UNOS waiting list for a transplant. It also is a challenging time due to the fact I have now become a legal adult. We have to find an adult transplant center that would accept me even though I am still a very young patient. I have learned that during prolonged stays like this, patience is the most important attitude. It has been very challenging to not become frustrated and just want to leave the hospital. My medical team and I must keep in mind that we have no control over the speed of what is happening to me. I have been working hard to remind myself that as my body continues to fight, we are doing everything we can to assist in the process. Patience is becoming my motto!
Most hospital stays I am able to keep myself rather composed, but this hospital stay has been a bit tiring on my heart. I am very relieved that I finished my four semester courses before this admission. I invested a lot of time into my academics this summer, and thankfully completed the biggest priorities before my health took another turn. Although August was supposed to be a month full of time spent with family and friends, I am thankful I had the chance to work hard in school before my body became too ill for it. This stay has filled me with emotional flashbacks of last summer. The lengthy days spent in the hospital dreaming of being free… yet not knowing a set plan or when I could be discharged. I miss seeing my sisters terribly. Being inpatient at the hospital makes me value the time I get with them even more! Being with my family and friends is the best medicine in the entire world. I miss my humble and beautiful church family at FPC. Whenever I am well enough to make it to sermons, I always leave feeling so comforted by being in the presence of all of the lovely church members. I cannot wait for when I can see my sweet dog again… I am thankful for my sister and Boomer’s Instagram page that provide me a mental escape. Seeing his photos allows me to imagine cuddling his warm body. All of these emotions of pain, anguish, homesickness, joy, laughter, and more are what I am holding on to keep my soul thriving and feeling human in a inhumane environment of being ill.
I am so thankful to be supported by such an incredible team of family and friends. They have been visiting me so often, even though it is quite a drive. Seeing them brings me immense joy and comfort. All of the beautiful, gracious, and kind cards and gifts I have been receiving have been held near and dear to my heart! It is truly incredible what the power of communication can do. The wall in my room has cards from loved ones, and my room is scattered with trinkets and sweatshirts that have quotes on them that motivate me. I cannot wait for the day when I am healthy again and able to give back… it would be such an incredible honor to one day be able to pay forward all of the kind acts I have received to other children, teenagers, and young adults facing rare and/or chronic illnesses. Being a recipient of such love and admiration motivates me to help others feel those same precious emotions one day too.
Thank you everyone for your immense patience as we ride this latest roller coaster. You all are the most incredible human beings I have ever been able to write to!
Here is to “Team Peace Within the Fight”