You are so brave to write here in your condition.

I wish you all the best and even more, you really deserve it.

Keep on fighting!

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.

I have to repeat: You are such a strong fighter!

Wishing you all the best and may you find a healthy and happy future asap!

It’s been about a month and a half since I last posted.
I hope you all had a merry Christmas and a happy new year.
A lot has happened since I last posted. Would you believe I was hospitalized again? I couldn’t believe it either, and it wasn’t even from the infection (though it could have been related). In mid December I started having a heart arrhythmia. I had been feeling off for a few days but hadn’t been paying attention to the cause with everything else going on. I even mentioned it to my surgeon when I finally got my jaw unwired. Two days later I got dizzy when I stood up to the point of my ears ringing, my vision disappearing, and my extremities tingling. I also noticed my heart fluttering with a little catch in my breathing. It disappeared after a few seconds and I was fine again, but I noticed the flutter come and go so I again went to the ER. Of course my EKG was normal, but it didn’t take long before I was taken to the back. When I first saw the doc, I explained everything I had recently been through, along with still having the picc line for my iv antibiotics. He listened and did his exam and then told me that even if all the preliminary tests were negative, we would still have a conversation as to whether or not it was in my best interests to go home. He planned to admit me either way. I was taken to a room and placed on the monitors. Another IV was placed and multiple labs drawn including more blood cultures. About an hour later, the arrhythmia started again. People came rushing in asking if I was ok. I had ventricular tachycardia (fortunately the non sustained kind) and was definitely being admitted. My lab-work all came back normal, but that was just the beginning of the poking and prodding. I had every cardiac test known to man and they were all normal, but I was still having episodes of vtach. I was seen by the hospitalist, cardiology, electrophysiology, and  infectious disease. My surgeon had pneumonia, but I kept him apprised of what was going on via text and he was in regular communication with the hospitalist. To my pleasant surprise the NP that gave me my cardiac stress test is a friend of mine. She was so helpful in getting some of my other tests and X-rays done quickly and stopped by daily to visit as a friend. Cardiology tried me on cardizem, but it gave me a severe headache and really lowered my already low blood pressure, so I only took one dose before it was discontinued. I ended up having my picc line removed and change to a midline catheter as it was remotely possible that it was causing irritation being in my heart creating the arrhythmia, even though in the X-ray it looked properly placed. The arrhythmia stopped and hasn’t come back. I was finally discharged after 7 days. To say I was exhausted before this hospitalization now seems like an exaggeration compared to what I now felt. I was able to push myself to go to my kids Christmas concert and watch them perform in the choir and orchestra, but fatigue remains a constant nearly a month later. I finally had my cardiology follow up this last week. It’s was a blessing in disguise that I had to get the extra cardiac clearance preoperatively. It gave me an established cardiologist when I had the heart arrhythmia. He did his exam and couldn’t detect any arrhythmia. He still wants me to do a 2 week holter monitor with a Zio patch to make sure, but doesn’t see any need to go on meds. In fact with my blood pressure being low normal, the goal is to avoid them completely. I discussed my fatigue with him, and he was actually surprised that it’s not worse. He says given the amount of time I was in the hospital over the last 2 months and only being allowed to get up to go to the bathroom, I should expect this to continue for awhile longer. He said it will take time to get back to where I was before my surgery. It was depressing to hear, but gave me relief to know it’s not heart related and will get better.
I am happy to say that I had my last iv antibiotic on December 28th. It was so nice to be able to sleep through the night after 5 1/2 weeks of waking up or being woken up at 3 am every morning. That length of time was based on my labs, specifically my wbc, platelets and ESR. I’m still on oral antibiotics, which are being extended past their original 20 day course. I’m now looking at over 30 days because I started having jaw pain again this last week on the side that had the infection, and the stupid hole is STILL in my mouth albeit very small. It is still draining, but it’s clear discharge. My surgeon calls it contaminated but not actively infected. He still thinks the hardware will need to be removed, but wants to wait as long as possible.
On a side note, my neighbor (and dentist) was out front the other day when I was driving by. I stopped to say hello and catch up a bit. He said my face looked amazing and my teeth were beautiful. I can’t tell you how weird it is for people who I have known for ages (even my husband) to tell me I look pretty or my face looks great since having surgery. It seriously has me questioning what they thought I looked like before. I even told that to my dentist. My husband has always complimented my appearance, but when he made that comment about looking better after surgery, I had to know what he meant. Both he and my dentist said the same thing, which is with my lower jaw and chin moving forward, it’s in a more aesthetic position with my profile looking more balanced. Whatever.
I have my next orthodontist appointment this coming week. It’s been nice not having to deal with elastics over the last 10 weeks. I know it’s the only way to get the needed positioning moving forward, but still dread it. I’ll also be having a serious discussion to address the never ending tongue thrust saga.
Through all this, my insurance company that told my doctor that no pre authorization was needed because of my other insurance has since denied my surgery saying I needed pre authorization. You just can’t make this stuff up. On top of this, they have gone back and reviewed past EOBs and decided not to cover my last order of CPAP supplies without reason, expecting me to pay over $1000 for them. I will be spending the next few days writing my appeals and sending them in. Wish me luck.

Thank you anton08. I appreciate you and everyone else who has stuck with me and supported me through all this. It has filled my heart.

Thanks TrainTrack. I am north of the fires. My dad had to evacuate from the Eaton Fire, and his house is ok. The fire stopped 5 streets north of him.  My husband’s cousins and aunt and uncle had to evacuate from the Palisades Fire. His cousin’s house is a total loss, but his aunt and uncle’s house survived even though all of the other houses around them were lost. It will be quite some time before they will be able to return and will need some work done due to the smoke damage. It’s been a stressful couple of weeks.
In regards to what I’m going through being service connected, there isn’t a clear connection to me. I did have some burn pit exposure, though not as much as others have. I question if some of the things I’ve been exposed to have affected my immune system, making me more susceptible to infection, but I have no definitive proof. The jaw and airway issues are just how I was made.
I’m not going to give the insurance company any passes. It will be made right. I have the documentation from my jaw surgeon that they jumped through all the right hoops. It will just take time, and I seem to have plenty of it right now.

Thank you napacaster.