Hospital Days on Hospital Days
Today mark 15 days of being away from home and being at Children’s Hospital of Wisconsin. I can not even begin to explain what a case of the hospital blues my mom and I are having. Today has been a day full of my desire to chuck my IV pole out the window and rip out each tube and line my body has. I know its from being cooped up in here so long, but I am developing some grumpiness. Its tiring sometimes to constantly have my family split up as I fight against my disease progressing. I am sure being on 60 mg of prednisone and an appetite simulant when I can’t really eat much is not helping either! For now candies and salty snacks are my life savers along with art projects.
Medically not much has been going on. My medical team is constantly growing with med. students, residents, fellows, GI doctors, case managers, RNs, dieticians, pharmacists, ICU teams, and so many more. Everyone wants to help me. We all feel frustrated as it is so hard to treat my GI disorders. It has been an especially challenging day today because of a increase in my symptoms. Last time I updated we were all full of hope. I was able to have 24 hours of no abdominal discomfort and/ or distension. However, the next day my symptoms came back once I was transferred out of the PICU and back to the GI floor. After a couple days of trialing Neostigmine through my G tube, I was transferred back to the PICU to administer more of the Neostigmine via IV in order to get my symptoms under control. The next round of Neostigmine infusions was very disheartening. My previous dose of 0.5mg did not relieve any of my symptoms. We continued to up my dose cautiously and eventually got up to 1mg. My body then could no longer handle the toxicity of the medication. Tremors began to spread throughout my body as I began to feel my tongue and throat swell. Needless to say: the medication was sadly stopped and I was eventually taken back to my room on West 11.
The weekend was spent recouping and taking things easily. It was hard to spend so much time in the hospital not making any medical progress. I had such an itch to bust out of the hospital all weekend long. Once the week began the hospital hustle and bustle of doctors came back into full swing. I was started on a higher dose of my Octreotide injection twice a day. This medication is supposed to improve the motility of my small intestine. The adverse result of Octreotide is that it further slows my already severely delayed gastric emptying time due to my Gastroparesis. To combat this it has been declared I will need to be hooked up to a drainage bag from my G tube. This has not helped with my break through bits of anxiety from having stomach contents visible and occasionally leaking onto me. It really causes me issues to see my gastric contents. I know I will have to adapt to it, but for now it really stresses me out. Because of all of this I have to now deal with changing my outfits at least twice a day to clean up my G tube bag spills. Its something I truly will need time adjusting to.
The ultimate end goal of increasing the Octreotide was to be able to tolerate J tube feeds. My J tube ends in my small intestine, bypassing my stomach. The plan was to begin trophic feeds. Trophic feeds are essentially a small trickle of formula into my small intestine. Its purpose is to simply prevent my intestinal muscles from atrophying. It also promotes cellular growth of the gut. Today we began feeds at 5 mL/ hour. That is essentially a teaspoon of formula an hour. However my distention was not under control as my feeds were started. After one day of feeds today my body had enough. I became even more distended. My pain began to sky rocket. I also had to see my abdomen morph before my eyes and become very hard and tense. As my symptoms began to progress formula began to pour out of my G tube. This made us very concerned that my small intestine is moving the wrong way and putting formula back into my stomach. Having intestines that don’t work properly haws been such a massive battle. I have now stopped feeds for now as I ended up needing pain medications since my Pseudo Obstruction is making my body reject any enteral nutrition. Hopefully tomorrow we will establish some sort of plan.
To say my family and I are exhausted is an understatement. We have all been fighting this process for nine months now. Even in these darkest moments, the light is constantly shining through. I am in shock over the amount of compassion you all have. The constant messages, cards, packages, visits, prayers, and so much more have been nothing short of spectacular. I have a whole wall in my hospital room dedicated to all of the cards. We are so grateful for the tremendous love. I am especially touched by the love towards my sisters. I am constantly worried about them. They are so young and do not deserve to go through this. Knowing people are at home loving on them helps us all tremendously. So please, say a prayer that my family feels nothing but love and peace as we all fight to bring me home. Thank you all for following my journey. You all constantly remind me that things will get better. Better days are coming, I know it.
Love to all,