The Longest Stay Part:2

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous hand." Isaiah 41:10

     Today was a fun day. The circumstances were incredibly sucky but if I'm going to fly in a private jet I'm going to enjoy every darn minute of it. The flight crew picked me up from the hospital in Las Vegas around 8:30 in the morning. They were extremely nice and one wasn't bad to look at ;) We took an ambulance to the airport and then I was loaded up first class in my fancy jet. It was a super small plane but it was only an hour flight and I got to lay back on a stretcher for it so I can't complain about the leg room. We took off around 9:15ish. A few minutes after take off the oxygen masks fell from the ceiling. Not because anything was wrong but because it was an older plane. I'm not going to lie I questioned my confidence in the small plane when that happened. It was a quick one hour flight into Burbank. We landed and I was loaded into a second ambulance. It took longer to get to the hospital from the airport than it did to fly from Vegas, Thanks LA traffic. 

     We made it to USC, which is a much much larger hospital than my usual one. I was moved into my new temporary home in the 5th floor South ICU. The accommodations here are nowhere near my normal hospital's. There is no couch or large TV and there really isn't room for visitors but I was here to get fixed so I really didn't mind what the room looked like. My wonderful mother, who I will never be able to thank enough, drove out shortly after I got settled in.

     I met with the intensivist that would be in charge of my case. He was nice and asked tons of questions about what we have tried and what they were thinking about trying. Their main goal was to get me off of the epi sooner rather than later so a few hours after I got here we started very slowly titrating back. The next morning I met with the allergist that would be on my case. She has two other mast cell patients she sees, but admitted I was her worst off. She agreed that we needed to get me off of the epi drip and we'd see what we could do from there.

   

 Getting me off of the epi went about to be expected. There were lots of benadryl pushed through my IV so I was constantly tired and napping. IV pushes of benadryl also give me a loopy feeling sometimes so I felt like I was in space most of the time. We were able to get me off of the epi for about 12 hours before I went back into anaphylaxis twice. They reconnected the epi at a low dose until we could figure something else out. This was when I brought the idea of a continuous dyphendyramine infusion to her attention. I had researched it previously and it was brought up in Vegas but it's not widely used or a widely known option. CDI is a continuous benadryl drip instead of epi. The continuous benadryl insures that my mast cells stay calmer. It doesn't cure anything but it greatly reduces the amount of anaphylactic attacks as well as greatly reduces the amount of rescue meds needed. The allergist had never heard of it so she went to work researching it. The next day it was decided that this was indeed going to be my best shot at getting off of the epi drip long term. They started the benadryl drip on Christmas Day and I'm not going to lie it was kind of the best Christmas present ever.

     The world's best mom drove out to LA again to spend Christmas with me and my benadryl! Somehow Santa found me even though I was in a different city! I woke up around 3am and there was a stalking and a Santa gift waiting for me next to my bed! I was completely shocked I wasn't expecting that at all. My momma came down to the hospital and brought lots of activities. I kicked her butt at Rummy, we tried to do a puzzle but I swear it was missing pieces so we gave up on that. The hospital also had a special Christmas dinner of steak and mashed potatoes. It was surprisingly delicious! Somehow my momma managed to make this Christmas special even though I couldn't be home. Hopefully I'll be home soon so we can do Christmas in January! Stay tuned for part III tomorrow! 

With Love, 

Elizabeth