As I began becoming more stable on 24-hour TPN, it allowed my body to be able to go out more often and see the world outside of my door.

On October 3rd I had planned a visit to my work to visit my boss and see what the store was up to since my body’s abrupt flare on June 24th that put me out of work. Since my dad and I were using the wheelchair so frequently, we ordered some supplies to make it easier for us to go out since my bags couldn’t fit properly on the back of the chair.

I bought on Etsy something called “Tubie Clips” which are handmade clips that clip to your clothing and have buttons to help keep your medical tubing coiled up, so it doesn’t get caught on things and accidentally get ripped out. There are so many fun patterns, and you can even match them with clothing. 

On Amazon we got a wheelchair backpack that attaches to the handles of the wheelchair and has numerous compartments to store all of my medications and supplies. 

Anytime my dad and I needed to leave the house, whether it was for an appointment or just to go to the park- we had to pack as if we were going to live in the desert for a week. All of these medications had to come, blood pressure and heart monitors, glucose monitors, etc. This was all because flares or spikes in symptoms could happen anywhere at any time, and we needed to have the equipment to be able to determine what was wrong to see if we could handle it there or if we needed to go back home. I had even made a laminated tag that remained on the backpack that told my dad what he needed to pack every time we went out. It was very helpful for going out and this way he didn’t forget anything. 

My TPN bag was this large rectangular bag that didn’t fit on the back of my wheelchair, so it had to sit beside me in the seat. Getting into Lyfts to go to certain destinations had made my dad and I realize we needed to be better about getting in and out of cars. We would watch videos at home for how to get on/off curbs and how to load the wheelchair into the car. We’d practice in my room with me removing the legs of the chair while he would load my other bags into the “car”. This practice made perfect, and we soon became experts at the load-in and out process. 

My arm’s skin began getting more irritated by the PICC dressing over time even when changing to more sensitive dressing types and trying to minimally move the dressing each week to give certain areas of skin a break. I started getting a lot of redness and blisters. My skin was always itchy, and every day became a strugglesome game of not touching my arm to scratch it. A lot of times I’d even get woken up from sleep because of the itching.

On October 5th I saw a pediatric GI specialist at another hospital to try and get more eyes on the case. They were kind and had some tests they wanted to do to look into some specific conditions that they believed might’ve been causing some of the issues. Mainly, they were concerned it was Mast Cell Activation Syndrome (MCAS). This had been the third time this condition had been brought up to me over the course of the summer-fall and I had been tested a few times with all results coming back negative. The struggle with this test is that the blood tests would only be positive if I was having a MCAS reaction at the time that the blood was being taken. We tried to measure it by when I had my hives however, they never occurred at the doctor’s office, so we were never able to “catch” it and see if they were truly stress hives or not. My labs for MCAS came back clear for the third time.

They were interested in the potential of a systemic disorder (like MCAS) or a metabolic disorder and low on their differential list was testing for IBD (Irritable Bowel Disease) since I had not had an IBD workup. They also wanted to do testing for Mitochondrial disease. Also due to my rapid weight loss they were concerned I could have developed Superior Mesenteric Artery Syndrome (SMAS) which could’ve compressed arteries in my abdomen causing severe nausea. Since my main care was at another hospital, so they gave us some more tests that we could potentially try in the future. They suggested getting an MR Spectroscopy to check biochemical changes in the brain since no one had done imaging of my brain yet either. 

They were highly concerned with me being on TPN due to the extremely large risks of parenteral feeding alongside how long it had been already. They highly recommended me to trial enteral feeding and said I was likely to have secondary gastroparesis as a result of being on TPN and having minimal intake by mouth (PO).

I lent the GI team at that hospital my medical binder for 3 days where they extensively studied all of its contents to get a full picture of what was going on. This is how they came up with the plan I mentioned above. 

I was sent home from my appointment feeling pretty happy with how it went and had another stool sample kit to do at home. 

The next day I got a phone call that my iron infusion was scheduled for the end of January (oh myyyyyy). Throughout the months my dad and I would continuously argue for this to be moved up (which all resulted in nothing happening). 

Since I had been constipated for a while since starting on TPN, I decided to take a pill called Senna to get things sped up a bit. Well, I did get my stool sample however, that pill WRECKED me. I was basically in the bathroom all day for 5 days persistently. I knew to never take that pill again. My test results came back from the stool test showing some irritation which I was like- “from that pill, no kidding!”

The day before the Gastric Emptying Study, I was constantly coming in and out of the bathroom (from the senna) and among hives, flares, nausea, and a tremor attack, I made an arm rest organizer that I sewed and attached to my wheelchair to have a place to keep my phone in. I got a pencil case and sewed  some Velcro to it and attached it to my seat. It worked super well!

Read the next story to see how the longggg awaited Gastric Emptying Study went in, “G.E.S. You Are My Nemesis!”