My last post was pretty rough in context and execution. I’m going to back up just a little to fill in a couple of gaps. The 18th was my wedding anniversary and my daughter’s first ever varsity basketball game. I was definitely under the weather, but still chugging along. My husband and I agreed to celebrate our anniversary once I can fully eat again with a dinner at Larsen’s. I can’t wait! I was able to attend the basketball game, which I fortunately was lost. It was the toughest team they will face this season and they weren’t slaughtered. They’ve since won their last 2 games that I was unable to attend. I got home Monday night and crashed.
Tuesday, I had my weekly routine follow up. By this time, we knew it wasn’t a muscle spasm and started to zero in on the salivary gland looking for an infection or stones. My salivary duct was probed, but nothing was found. I had some slight changes made to my routine meds, but stayed the course with my antibiotics. My best friend also came to visit Tuesday afternoon for a few days from the East Coast. We grew up together and remain extremely close. It was her daughter that got married over the summer that was the impetus behind our family cross country vacation. We went out to dinner Tuesday night with me drinking my protein shake while she and my husband enjoyed real food. I was exhausted, but chalked it up to the running around and getting ready for company.
When I went to get out of bed Wednesday morning, I nearly passed out. I had a little apple juice thinking maybe my blood sugar was low because my intake routine was thrown off with our houseguest, but that was not the case. I went back to bed and slept for hours. I woke up with a 101 fever. I called my surgeons office and dragged myself over there with my friend having to drive. My doctor immediately sent me to the ER to have lab work and a CT done. The ER was busy, but I was still taken right back. After my history and exam were done, I immediately had 2 IVs started, blood cultures and labs drawn, then the CT. I put the ER doc in touch with my surgeon to consult. Once the CT was done, there was no question it was an infection, but the source still wasn’t clear. The imaging done showed the entire left side of my face down to my neck involved. No abscesses were visible, but tunneling could be seen where the infection had traveled around the area. I was started on antibiotics and told I would need to be admitted until a determination of what was causing the infection could be made and the infection could be gotten under control. I was in a hospital room around 10pm that night.
Sometime during the night, the infection started randomly draining into my mouth. It felt like saliva, but tasted and smelled like death. When my surgeon came to check in on me Thursday morning, I showed him a picture of what had been accumulating that I had spit out. A that moment, I was told I had to go back into surgery to open the left side of my jaw back up and clean it out. I was devastated to say the least. At 4pm I was wheeled back in the OR. Everything was cleaned out and 2 Penrose drains were placed in my cheek to continue the drainage. I was told that if everything went well, I could be looking at a Saturday discharge with oral antibiotics to be taken at home.
Friday did not show huge leaps and gains in improvement, and the cultures taken in the OR had a preliminary result of showing Strep Veridans, a common mouth bacteria. Until the sensitivity results came back, I wasn’t going anywhere, but would continue on the IV antibiotics that had been started in the ER. Saturday morning I was able to get my drains removed as there really wasn’t much drainage. My surgeon and the hospitalist kept going back and forth on the best course of treatment moving forward. The antibiotics were fighting the infection, though slower than hoped. The question kept arising if I could go home on oral antibiotics. My surgeon was very uncomfortable with that option, citing that my surgical jaw fractures were not healed and very susceptible to infection along with the hardware holding me together, and I was still sleeping through most of the day at this point though my fever had finally broken. He wanted to play it safe and keep me admitted on iv antibiotics. I continued to improve, and on Sunday the discussion of having me continue the same iv antibiotics at home was becoming a strong contender. It had been mentioned in passing the previous 2 days but at that time the hope was the infection would clear enough to be able to safely transition to an oral alternative.
I agreed to having the PICC line placed, things were quickly set in motion. The first call I got within an hour of the decision was from the pharmacy that would be delivering my medication to my home after my discharge. They only deliver twice a day and knew I needed an evening delivery so as to “not miss too many doses.” WTF?!!! Miss too many doses?!!! I better not miss any doses!!! I was frantically texting my surgeon at this point to get in touch with the hospitalist to come up with a foolproof plan to make my transition from hospital to home seamless.
Monday early afternoon, my PICC line was placed. It’s a very different experience being on the receiving end of getting a catheter that goes into your heart as opposed to taking care of a patient in the same situation. I wasn’t freaked out, but was definitely nervous. Knowing too much isn’t always a good thing. The first try to insert the line in my left side (since I would be giving my own infusions and am right handed) failed. The second attempt was much better and successful.
https://dereferer.me/?https://imgur.com/a/sQVYoIJ I had to wait for my 3pm iv antibiotics before I could be released, so my 9pm dose could hopefully arrive and be given at home. It was agreed that if delivery wasn’t received by 9:30 I would head back to the ER to have my 9pm dose given there because no risks of missing a dose can be taken.
The delivery arrived at 9:10pm. I did a cursory inventory then pulled the supplies I would need. My husband was by my side ready and willing to help in any way I might need. Truthfully, I needed quiet and he is one to talk when nervous. It’s been quite a few years since I worked with infusion catheters, and they were a slightly different type. I started flushing my line and getting ready to hook up the iv, making sure everything was properly primed and mixed. My husband started to talk about our dog, and I think in that moment, he actually felt the daggers shooting from my eyes. He sat silently as the infusion started, then we spoke again.
My infusions are every 6 hours for the next 4 weeks, possibly 6. They take 45 minutes to almost an hour from start to finish. That means the most sleep uninterrupted I can get at any time is 5 hours.
The next morning, the home health nurse came for her first visit. She had a big smile on her face when she found out I was a nurse. She watched as I did my 9am infusion, and left before it was over. It also happened to be Tuesday which meant it was my routine post op appointment with the surgeon. I found out at the appointment that the incision made during surgery wasn’t closed at all. I have an almost 2” hole in my mouth that exposes my jaw bone and the hardware on my left mandible. I have to irrigate it out with a syringe every time I eat. I also had to get my jaw rewired shut. In the presence of the infection and the high risk of nonunion and loosening hardwire, I agreed to be wired again. It was nice having my wires removed just before surgery in the OR. I was just lucid enough to feel the release of pressure as each section of wire was removed before going under. The wires were removed because I was orally intubated and there were airway concerns with the infection and swelling that had gone into my neck. Being wired this last time was much more intense. My surgically corrected midline had slightly shifted, so the wiring was done in a way the put things back in alignment, and the wires were tightened much more than the first time. I think a few brackets were broken in the process.
https://dereferer.me/?https://imgur.com/a/MdJ7fEI It even took a few attempts of twisting the wire to tighten, only to have it not be in alignment and have it untwisted and retwisted.
Today is Thanksgiving and I have a lot to be grateful for. I’m home with my family, not in the best of circumstances, but certainly not the worst. The antibiotics are working against the infection and will take time. The original surgery is still a success and I’m still breathing the best I have in years. I’ve also come to find this forum to share my experiences which has had the unintended result of so many people giving me amazing support throughout this journey. Thank you all for following along, and happy Thanksgiving.
