Hospital Update: Day 95 Sorry for the lack of updates recently. Things have been pretty rough. Blood cultures still remain positive, growing VRE and Candida. Susceptibility testing shows these resistant bugs are only growing stronger. Last Friday (8-11), they again decided to pull my left femoral line and place a new one on the right side, along with an IV in my left arm. Despite this, and switching IV antibiotics/antifungals around, blood cultures have remained positive and I’ve remained miserable for the most part. Sadly, the IV in my left arm didn’t last more than a few days and has left me with an occlusive blood clot in my mid to distal brachial vein (my bicep area). It’s swollen, red, hot to touch, and painful so they went up on my Lovenox dose and will be consulting IR since it hasn’t improved and just gotten bigger. Speaking of IR, today they’ll be,once again, pulling my femoral line and placing another on the left side. ID believes the line is now colonized and wants it out asap. We know the new line will probably still get infected, but it might buy us a tiny bit of time. The infected line is kinda like a beehive. Knocking it down won’t get rid of all the bees, but it will temporarily get rid of most of them, and slow them down until they build a new hive. Pulling the colonized line won’t get rid of the infection completely, but it will temporarily get rid of the most of the bugs that latched onto it, slowing down the infection until the bacteria/fungi make a home latching onto the new line. This never ending cycle is beyond exhausting. All my drs agree that I desperately need to get to a tertiary hospital with more resources and experience, so they can remove my leaking bowel, and/or provide other interventions that will fix the source. Sadly, most hospitals these days don’t see me as a human being, just another number, a dollar amount, a survival statistic. Nobody is willing to take the risk on me. Many hospitals are at capacity right now too and not accepting any outside transfers. This has made it incredibly hard and after being rejected a few times, they’ve decided they are tired of doing all this work, just to be told no, and will no longer “waste their time” reaching out to try and find a hospital that could help me… Despite being completely drained physically and emotionally, I’ve still got a lot of fight left in me and want to exhaust all my potential options. I’m not giving up yet… but those around me are and I can’t do this alone. Please please pray for strength. Strength for the medical professionals caring for me. Strength for my body fighting these relentless deadly infections. Strength for my soul to not lose faith or give up, simply because others have. Thank you all so much for your support and patience with updates. I don’t know what I’d do without you all! 💚 #negu #teamtricia #terminallytricia #bacteremia #fungemia #candidemia #sepsis #lifesupport #tracheostomy #tpn#tpnntilator #i#intestinalfailuremito #mcas #cvid #eds