At the Hospital

Over the course of the past two years, since being released from the hospital in December of 2016, I've been struggling to manage the nausea that comes with living with digestive diseases, POTS, and EDS. But I, along with my doctors, determine that MCAS is the culprit.
There have been many ups and downs in my recovery: I've probably gained and lost 20 pounds, 3 separate times. On November 8, however, I weighed 120.0 pounds at 6 feet tall, which is the lowest I've ever weighed since being diagnosed with all of my conditions (I haven't weighed that little since I was 12 years old). Even though I was feeling better in so many ways, such as starting online school and just being more energized and active in general, I had lost a total of 32 pounds and had a BMI in the 16 percentile, meaning that I was in the morbidity and mortality range. It was because of this that I, along with my doctors, agreed that despite being in an upswing activity-wise, I needed to be readmitted to the hospital for supplemental nutrition.
When I had an NJ tube and GJ tube back in 2016 to early 2017, I tried Vivonex, Peptamin, Boost, Orgain, and Kate Farms but couldn't put them through the tube because even at the lowest rate possible, they would give me nausea and horrible stomach cramps. Having a PICC line placed for Total Parenteral Nutrition was the right choice over a feeding tube because it would bypass all of those issues.
On Thursday at 12:30 pm, my mom drove me to the Cedars Sinai emergency room to be admitted. Because the ER was packed and I wasn't an emergent case, we ended up waiting over 4 hours. On another note, because most people, including doctors and nurses don't know about MCAS, the questions they ask during intake are very flawed. When I was first taken back to a bed in the ER, the first doctor thought that I suffered from anorexia because my reason for being here was that "I can't eat and have had major weight-loss", not "I have MCAS which gives me nausea, so I struggle get in enough nutrition, and thus have had major weight-loss".
After being admitted, I was brought to a transition area between the ER and a regular room because there were no beds available; the nurses said that it was the hospital was the most full they've ever seen it. It was a bay area meant for people post-surgery with my "room" being a clear glass enclosure with only room for a bed, a toilet, and a chair. My mom is the best; she not only stayed with me for the entirety of my hospital stay, but on the first night she slept on two tiny chairs butted together with her head resting on the foot of my bed. Luckily, that less than desirable situation was only for one night because the next day, Friday, they gave me my own room.
It was on Friday that they took me to get a PICC line, a port in my left upper arm that connects a tube down to my heart, and that night they started to give me TPN and SMOF Lipids that night. About 3 hours after the TPN and lipids were going in, I had uncontrollable nausea, the worst I've had all year. I was crying and my mom brought in my nurse to give me a dose of IV Benadryl, which not only helped the nausea, but also thankfully put me to sleep. We suspected that I wasn't tolerating the SMOF lipids because they contain MCT oil derived from coconuts, and I've had a reaction to coconut in the past when I tried to use it topically for acne. So for the next 2 nights, only the TPN went in, and I tolerated that okay. On Monday night, we added in a different kind of lipid without the MCT oil and that was okay too. Since I was able to tolerate both the TPN and new lipids for a few nights at a normal rate for 12 hours, I was able to home on Wednesday.
A 6-day hospital stay might seem excessive, but I expected to stay that long when I went into the hospital. It is really important for doctors to monitor me when I first start the TPN because it raises blood sugar significantly, and when it stops it causes blood sugar to drop. This is why the infusion slowly increases for the first couple hours, then infuses at a higher rate, and finally tapers off for the last couple hours. At home, I also take my blood sugar with a glucose monitor 1 hour after starting the TPN, and 1 hour after finishing it, to make sure everything is okay.
Now that I'm back at home and have had the TPN and lipids for a few weeks, I've gained 8.2 pounds! Yay! Not only am I feeling less fatigued, but I am also feeling happier. The everyday stress of worrying about how I am going to get in enough calories is gone. I just have the TPN infusing when I sleep, and then I also have 2 liters of saline going in for 5 hours during the day, because I might as well help my POTS while I have the PICC.
Even though I tried to avoid going back to the hospital at all costs, I reached a point where I had to realize that no matter how much I tried to improve or use willpower to overcome the nausea, I needed more help than I was able to give myself. In the end, I know that this PICC line is the best thing for me.