The Longest Stay Part: 3

"Lord my God, I cried out to you, and you healed me. O Lord, you brought my soul up from the grave; you kept me alive, that I should not go down to the pit." Psalm 20:2-3

     So here I sit. Day 16 of this hospital admission. I have officially been off of the epi drip for four days with NO ANAPHYLAXIS!! The benadryl pump is proving to be incredibly effective! I could have never imagined it would work so well. But now we're in a predicament. I'm in California and the home health company that I would be using is in Las Vegas. It is nearly impossible to coordinate me going home on a benadryl pump from California. So the plan is to transfer me via air ambulance back to Las Vegas, get everything figured out with the home infusions and then discharge me from Vegas. My ICU doctor and allergist gave the insurance company clearance for transport on Tuesday... It's now Friday. Everything is set, the airplane, insurance approval, everything. We're just waiting on a bed to open up in Vegas. Which is sounding completely impossible. 

     I like to consider myself a patient person but I'm starting to get antsy. I feel great, honestly better than I've felt in a really long time. The benadryl is fighting my crazy mast cells for me so I feel like I have more energy and feel less run down. But I'm still stuck in the ICU. I'm still tethered to an obscene amount of wires and people are still keeping track of how much I pee. I don't belong here anymore. My body knows that, my brain knows that. So I'm getting inpatient waiting for this bed to open up in Las Vegas. I want to be home in my own bed. I want to be off of the constant heart monitors and I want to get back to my new life with benadryl coursing through my veins 24/7. Because for the first time in a while I see hope that I can live a normal life. At least for a few months while we let the benadryl do it's thing before we try to get me off of it. I can't tell you how extremely difficult it is to let this happen in it's time. I haven't felt actual sunshine in over two weeks. I haven't been able to take a proper shower in over two weeks. This waiting game is not one I'm a fan of playing. 

   

The nurses have been extremely nice! They have gone above and beyond their job description by bringing me jello late at night, sneaking me brownies from the cafeteria downstairs, just coming into chat when they have a few extra minutes. They have been fantastic. I would have lost my sanity a long time ago if it wasn't for their kindness. I've been here long enough that I'm starting to learn about their lives outside of the hospitals and we share pictures of my friends and their kids. I guess if I'm going to be holed up somewhere I might as well have nice people surrounding me.

     Hopefully I'll be shipped back to Vegas tomorrow. If not after the New Year I will work on just getting discharged from here. I'll keep playing the waiting game. Because although it's a sucky game to play at least I'm stable, at least I'm safe, at least I'm not in anaphylaxis. 

With Love, 

Elizabeth <3 

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 

The Longest Stay Part:1

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 

      I'm not going to lie. There have been times in this last 16 days that I have definitely not felt the power of this bible verse. I had my most scary anaphylactic reaction a few weeks ago. I called 911. I don't remember much else other than the firefighter pulling me from my car and the sudden rush of adrenaline that went through my PICC line shortly after. The rest is gone. I have no memory of the ride to the hospital, I have no memory of the first hour in the trauma room, I have no clue what happened. I just know that when I did start coming back around the ER doctor was trying to place an airway tube. Thankfully; the third round of rescue drugs did their job and I narrowly avoided being intubated. This was the beginning of my longest hospital stay to date. 

   

 That night they put me back on an epi drip and I was admitted into the ICU. This is "normal" I figured I'd be there for a day or two as we backed off the epi drip and I'd be able to go home. That's not what happened though. Day two we tried backing off the epi pretty quickly, I cautioned them against this but they didn't listen. I made it about three hours off the epi drip before I went back into anaphylaxis. It wasn't anywhere near as bad as the day before but my oxygen levels dropped pretty rapidly. They reconnected the epi and gave a nebulized version of epi as well as benadryl. I recovered from this one fairly quickly. While on the epi drip I was still having "leaking reactions" migraines, itching and burning skin, upset stomach, the whole nine yards. These doctors consulted with Dr. Afrin who is a mast cell specialist in New York that has been following my case. He suggested we try an emergency dose of xolair. I had talked to my doctors about xolair previously and we were going to try it but the plan was to wait until after NewYears.

     We were able to get insurance approval for the emergency dose and they administered it on Saturday... It didn't go well. The thought right now is that I reacted to the medication being given to fast and not the actual medication itself. But either way it was a miserable reaction. It started off with the injection site swelling quite a bit and then I broke out in hives and extremely itchy red blotches. I got extremely nauseous and dizzy all at once. My body couldn't figure out if it wanted to heave or pass out. And then the dystonia hit. Dystonia looks exactly like a seizure except I'm "there" for all of it. My eyes are open and I can hear everything but I shake violently and my muscles get so tight and rigid. This freaked the ICU doctors out. They were once again considering intubation because I was having a hard time keeping my oxygen levels up on my own. It took two rounds of epi injection, benadryl, and ativan to calm everything down. It was after this reaction the ICU docs decided I was officially out of their scope of practice. They made the decision to transfer me to USC Keck hospital in Los Angeles. 

    It was definitely not an expected move but a very much necessary one. I was now facing Christmas in the hospital miles away from family. God has an interesting way of working everything out. Stay tuned for part II tomorrow. 

With Love, 

Elizabeth <3