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I am writing this post from my hospital room IN FLORIDA - where I am going on day 9 of being here. The story is so long and so many ups and downs I feel like I could write a book. I will try to get as much down with getting into too many gritty details...
Our little family decided to go down to Sarasota, FL for the Christmas holiday, and to get away from cold Indiana. We had a great time and were even able to get family photos done. However, on our last night there (the 25th) I started getting extremely sick - 104 fever, vomiting, diarrhea and terrible shooting hip pain. I spent the night on the bathroom floor in pain. The next day our flight home was cancelled and as soon as that happened, we went straight to the Sarasota Memorial ER. By the time I saw someone I was in "septic shock". Everything was either shutting done or firing up like crazy. My BP was 70/53, by my heart rate was almost 150. I was shaking uncontrollably and could not stop the vomiting/diarrhea.
I was admitted to the hospital and that first night was just spent trying to stabilize everything and trying to get my fever down. We also started several different kinds of IV antibiotics... basically throwing everything in the kitchen sink at it. The next day (Tuesday/day2) they drained a sample from the abscess and found it was indeed a bacterial infection. They also went back in the next day and placed a drain in the abscess and left it there, so there has been a constant flow of fluids since it was placed.
They thought since we started IV antibiotics right away everything should start improving within a day or two. But it didn't. It was getting worse - higher fever and shaking like a loon. I can't believe I didn't crack a tooth this week. My vomiting and diarrhea didn't stop either, and now both looked like they had blood in them, and my hemoglobin was dropping every day- eventually I needed a blood transfusion. I also was having some pretty terrifying hallucinations. It just really wasn‘t fun. 😔
Because of the dropping hemoglobin they thought for sure that I must of had a bleeding ulcer or colitis. So in the middle of all this, I squeezed in a colon prep! 🤦🏼♀️ So in one day I had a blood transfusion, an upper endoscopy and a colonoscopy and they found NOTHING! So back to the drawing board for that one. After the scopes & transfusion I returned to my room and slept for a few hours. When I woke up, I could not breath and I had swollen up like a beach ball! So we all went crazy for awhile - chest Xray in my bed, a breathing treatment and oxygen. They figured they had been giving too many IV fluids and that I may have had a reaction to the blood transfusion. A reaction, not a rejection. So anyway, they gave me a medicine to pee out all the extra fluids and eventually I could breath again and I didn't look like I was about to pop.
The IV antibiotics seemed to start working on the infection. My white blood cell counts went back to normal within a couple days, but I still kept getting high fevers. If I didn’t have ibuprofen and Tylenol on board the fever jumped back up to 102 immediately. However, yesterday (Monday/day 8) the doctors switched up two new things, and something worked! I have been fever free for almost 24 hours, and it feels absolutely magical! 🙏🏼
The main thing that needs to be figured out before I leave is the plan for the drain they placed last week. It’s so confusing, and I can’t even explain it in writing clearly, but basically, they can’t just pull the drain out. During my previous surgery, they cut lymph nodes out, but it left several “open faucets” if you can imagine that (because the lymph nodes are collection points in the lymphatic system). They usually close off naturally by themselves after surgery, but for some reason mine all stayed open and just kept pouring out lymphatic fluid. This caused what they call a lymphocele, and that became infected, eventually causing an abscess. So if they just remove the drain today, the space will just back fill up with fluid again and we could be right back where I started. The last three days we have been trying several strategies to reduce the drainage and to possibly get them to close on their own. The first one is 18 hours a day in “Trendelenburg” position. I posted a picture of what this is, but I call it hanging like a bat. It’s mildly torturous. I think I will probably have a procedure today where they will insert dye and will be able to see which areas are still leaking - and may attempt to seal any “open faucets“ left. 🙏🏼
So if you made it this long, thank you! I can’t believe I’ve been in the hospital almost 10 days, but I honestly feel like I am finally getting better instead of worse! We’re hopeful that I will be flying back to Indiana by the end of the week. The kids went back last week and my mom and dad have been holding down the fort there with them. Jerome has been the best caretaker ever, and has been a God send when they are explaining things to me that make absolutely no sense at all. Please pray that this procedure to seal the leaky lymph faucets both happens and works, and that I can tolerate this crazy bed for 18 hours a day for the next three days. 🤪
And - this is probably my biggest prayer request. I pray that my cancer has just been taking a nap during all of this and not taking advantage of the trauma. I had to stop my treatment the day I was admitted, and that is not a good feeling. :(
Whew...that was long. It's time to go back upside down so I can look for typos.
Love you all!
Lacey