Well, THAT was unexpected...

When I was trying to come up with a title for this blog post, that was all I could think of-- in a strange turn of events, I actually ended up landing myself back in the hospital. I talked about in my blog post last week that I was kind of struggling to figure out my post grad plans. On Thursday, I heard about a Grad School Fair happening at USC. After my class on Thursday morning, I headed out to see if there were any particular programs at any of the schools that caught my eye.

And, I have to say, it was actually pretty awesome. There were at least 60-70 grad schools there. It renewed my hope that even if I can't really work too much, I can at least stay in academia for a bit, or do a bit of both working and school. One of my professors has been telling me for a few weeks that they strongly believe I should go into scientific writing and/or journalism, since I understand the topics, and have personal experiences with it. Since I had my previous interest in social work, I found a couple of programs that would allow me to get a combined MPH (Master's of Public Health) and MSW (Masters in Social Work) at the same time, and possibly even with an online/on campus hybrid through a few different schools.

I still don't know if this is something I want to do immediately after graduating, but I am going to see if I can at least start working on the application process. With those degrees, and even with an MSW alone, I could do a lot of different things-- school social work, hospital/medical social work, consulting for corporations and HR, private practice, etc.

On my way back, a close friend of mine who I have been talking to on campus was in the hospital at Children's Hospital LA. She also has POTS and EDS, and is also Jewish, so we have met each other at a few different Hillel events, and she is a member of Spoonies Alliance, the club I recently founded at my school. They have been having some complications potentially associated with the POTS and EDS, and although I am not supposed to visit anybody in the hospital, I really wanted to swing by, and figured it would be ok if I made sure to wear my mask, constantly sanitize, not stay too long, etc.

When I went to visit, I was going to leave shortly, and I was showing her some of the materials I picked up from the grad school fair. One of them was a lip balm. I was putting it away, and figured I would use it. I read the label-- I saw grapeseed oil and wheat germ, but I read it twice, and it had noting about coconut. As I was putting it on my lips, I got a smell of it, and my lips started to tingle. It smelled coconutty.

I handed it to my friend, and immediately got the, "yep, that is DEFINITELY coconut." By then, my lips already swelled up like a balloon, as well as my tongue and face. I immediately started following my emergency protocol-- EpiPen, extra Benadryl, and my inhaler. Normally, since I have been on the Benadryl pump, 1, maximum of 2 epi pens is ok, and I can control it in my dorm with my nebulizer and IV fluids. However, since I was an hour and a half away from school, and the emergency meds weren't cutting it, I knew I needed to have at least EpiPen for my way back. I felt worse, so I went to the nurse to ask for a dose.

Things went down hill pretty quickly, so they called the emergency team, and before I knew it I was in the ER. They have been absolutely incredible here. Immediately they started protocol, 5 doctors in the room, respiratory, 3 nurses, and got my doctor on the phone for instructions. Even though I am not under 18, they are still able to care for me because I am close enough in age, and I was in their hospital after all.

I got 4 more doses of epinephrine into my muscle, and 2 rounds of inhaled epinephrine, and still wasn't great, so they decided that they needed to admit me to the PICU on an epinephine drip through my port, the IV line in my chest. I was worried that since I was over 18, they would have to transfer me to county, but given the circumstances, and that my issue isn't uniquely adult, they could take care of me.

Originally, it was supposed to be a one night ordeal- turn off the epinephrine in the morning, out by afternoon. But since I am not on the oral chemo anymore, and my steroid dose went down, I am stuck in that multiple day reaction cycle that I used to get into. It is now Saturday, and I'm still on the epinephrine drip, AND they are blasting me with steroids again (which as I have talked about before, I absolutely hate). I was finally starting to figure out my appetite, lose the moon face, etc, but now its coming all right back again.

Not going to lie, I'm pretty frustrated-- but at the same time, this is still not as bad as it has been. I have had to be on even higher steroid doses before. It has been 5 months since my last hospitalization, the longest gap between hospitalizations yet-- for those of you who have been following for a while, it used to be every two weeks.

The angle of this is awful, but we honestly look pretty ridiculous between the kid's PJs, unicorn balloon, IV poles and tubes. Hospital gowns are still gigantic even in kid's sizes.

The care team here has been absolutely incredible. I honestly have not encountered a single individual who has not gone out of their way to make sure that I am as safe and as comfortable as possible. Since I am immune compromised, I have my own room with a view of Downtown Los Angeles. And, since it is a Children's Hospital, they take a lot of extra steps to help cope with the emotional elements of being in the hospital, and to try to prevent more long term damage. For every painful procedure that I have had done, which has really just been extra IVs or needles (with the meds they are giving me, they have to use the port AND IV lines), they are so cautious about not aggravating the situation. For the epinephrine injections, they would rub the spot first for a while, then pull the skin, to minimize the sensation. For an IV line placement today, they brought in an ultrasound machine to visualize the vein, numbing spray, and a gadget called the "buzzy" which is placed above where they place the IV, to "distract" the nerves in the area. It still took a couple of tries, but it was a lot easier than normal.

"Buzzy," helps numb the injection sites.

The doctors and nurses actually listen to me, and although we all are just trying to get me out ASAP, are being very cautious to make sure that they don't just discharge me to where I turn around and come back. Once they turn the epinephrine off, they hope to have me out within 24 hours max. Since it is the PICU, the doctors come a few times a day, so they are going to reassess if they can try to turn it off later this evening.

I have been trying to get some schoolwork and tutoring done, but being on the epinephrine drip makes it REALLY hard to study or be productive. There is a Child Life department here, who came by and brought some craftsy stuff for me to do in order to pass time, and it has actually helped a lot. I'm not allowed to leave my room since I am immune compromised, so they brought me some painting supplies, coloring books, puzzles, and clay.

Honestly, the weirdest part of it all is being here at the same time as my friend. Its one of those things that as I just said in a text, "is pretty comical in a really terrible way." I am not allowed to leave my room, but they are allowed to, so we have been hanging out a few times a day-- FaceTiming friends at school, playing a game, talking about weird crap going on, etc. Everyone is REALLY confused when they see us together-- the nurses who don't know us have said, "Wow, you look great for being in the PICU.." "Oh, I'm actually a visitor...." Today they brought me a giant unicorn balloon to add some fun to the room, and the chaplain at the hospital yesterday brought us a Shabbat kit with 2 pretzel challahs, kiddish cups, spices, cards, and electric candles, so we got to do a little baby Shabbat together. Everybody seems to think that Molly is trying to sneak in and/or out, and when people come by, it takes them a minute to be like, "wait, you're the patient? and you are too?"

School has been incredibly supportive too. The Rabbi at Hillel, as well as the Dean and residence directors have gone above and beyond, to say the least (shoutout to rabbi Danny, Dean Hirsch and Nick!). Rabbi Danny was visiting Molly, my friend, right after I crashed, so the Hillel group actually bounced back and forth between our rooms, and made sure I got some food. Pitzer has arranged for things to be brought to me that I have needed twice during evening traffic.

Basically, its a crummy situation, but at least I was in the right place at the right time, and I just have to be as patient as I can. I don't feel great, and I'm ready to get out of here, but I know I can't push things. I will post updates as possible.