Small Taste of Freedom
I love my home. I am a homebody, and I am passionate about being one. I love being able to enclose myself with a blanket and watch a good movie. I simply love home. I am currently home for a beautiful weekend pass. I get to spend some much needed time relaxing before a big week of being inpatient again at Children’s Hospital of Wisconsin. It was a long five weeks being away from home… I am going to treasure each moment free from the hospital life.
It has been a rough stretch lately. I have had lots of tests, operations, and news thrown my way. It is so valuable to get more knowledge and information, but also exhausting. The biggest test I had was my nuclear transit study. The nuclear study tests and shows the motility of my stomach, small intestine, and large intestine. I underwent this three day study while still on all of my motility medications. Those medications are supposed to help my digestive system function normally. The results were what we were expecting but also devastating. I have globalized hypo motility. The average adults stomach empties in less than 60 minutes. My stomach took over 230 minutes… My small intestine and colon were also very slow and not mobile. It was hard to hear this but also validating to have more evidence that something is wrong.
The day after my study ended we leaped onto the next thing, or should I say team!? Nelsons team. The Nelsons Team is a composition of amazing medical professionals. They take on the most complex cases to figure them out and give their input. They wanted a muscle biopsy, gene study, and many other tests. The surgery for my muscle biopsy went well. I was sore after that. They went in on my right upper quad. The surgery team did a cautious job of doing extra sutures due to my collagen issues so things would not open up. We have the preliminary results back but we are still waiting for a proper review of it. I have a searing pain in my incision but am keeping it covered like they said. They also ordered a test called GDF15. It stands for growth differentiation factor 15. It is a bio marker for multiple illnesses. My test was the first test my geneticist has had come back positive. Hopefully we will receive more answers to that soon. I am very thankful we have this medical team on our side.
My nutrition status has remained the same. Each attempt to introduce nutrition by my J tube or orally has been full of symptoms worsening. It is so hard to remain on total parental nutrition and IV fluids. I am constantly trying to remind myself to just be thankful I am getting all of my necessary nutrients through my vascular system. Not many people with intestinal failure can say that! My dietitian, Lauren, at CHOW has been amazing. She makes sure I am properly “fed” each night.
The hospital stay was very hard and full of challenging news. We are looking at lots of quality of life factors… It is hard to be so young and be going through this. I truly wish we never had to be in this boat of uncertainty.
This week is going to be a really massive week for my family and I. I will be readmitted to Children’s early Monday morning. On Monday I am scheduled for an EMG study in the afternoon along with an EEG. The EMG will look at my muscle function. My team unfortunately believes I am having subtle daily seizures. The EEG is to look at that and my brain function. On the same day we will also begin my clean out prep for my motility studies. The 31st will be a huge day. I will yet again be undergoing anesthesia gain to have the catheters placed for my antroduodenal and colonic manometery studies. I sadly may have to undergo surgical disimpaction that same day due to my severe motility issues. My motility procedures will then happen the following day on September first. The tests are rather vicious and make me feel very ill. I am so saddened that this will happen on my sister’s first day of school. I am hoping these studies will provide us some more answers and guidance as what to do to possibly provide me relief.
I am stressed about this week, but I know I have a village behind my family and I. I am bummed out that I have to go back to the hospital. I am so thankful I got this time to relax though. My family and I have been able to be together at home. My amazing friends (Ellen, Olivia, Jenna, Grace, Sydney, and another Olivia) have all been amazing and came to visit me at home. Its hard to be transitioning to home even for this short bit, so I greatly appreciated it. Today my friends and I went out for coffee (and they got breakfast) at my favorite coffee shop: Colectivo! It was delightful. They win an award for being so patient as I was running late due to medicine issues. I am so glad I got this weekend with my family and adorable dog. I will treasure it. I send my best wishes to everyone as they embark on the beginning of a new school year… We will all be tackling big things together this week.
Hello to a big week for all!!!
I also went through and added photos to my old posts! At CHOW I can not add photos.