November 1st 2019 I woke up and went to a routine wisdom tooth extraction, or so I thought. Never in my anxiety filled mind, would I have ever imagined that my life would be changed forever.
The first week seemed fine, liquid diet is not my favorite, but it was temporary-ish. Had my week checkup (Nov 8th) and cleaned out the back of my gums and was cleared to eat regular food!
That excitement didn’t last too long, about four days later I was in so much pain, called the office (Nov 14th), went back and forth trying new antibiotics and pain pills. I couldn’t close my jaw, the cheek was so swollen inside that my jaw was locked in place, They tried to give me a couple days on the new meds but the swelling, lock jaw and inability to eat was just too much.
I went in Nov. 18th in hopes that they could do anything. My dentist took a picture and sent it to the third-party dentist that did my extractions. I was swollen and miserable, and they could see that. The dentist wasn’t available until the next day, so my brother, Garrison, and I went first thing in the morning (Nov 19th). They injected numbing shots and he decided to recut the lower left gum and clean out whatever debris was causing the pain and swelling. Back to a liquid diet (although I hadn’t had real food because I could barely open my mouth) they wanted me on another 7-day liquid diet and heal the reopened gum.
I felt better the next day, draining that fluid made a difference, until… the swelling came back. The upper left gum was also infected and since it wasn’t drained when the lower side was, it dripped more infection into the open wound. I could taste it and it was disgusting. I knew something was seriously wrong.
My brother, Joey, was having his wedding the 21st of November, it was a backyard event, I was basically coordinator and that meant running the rehearsal, helping with the dinners and building/setting up for the wedding. I had far too many tasks ahead to deal with this jaw nightmare.
I kept calling and calling to the dentist and my office, telling them how much pain I was in, I was SOOOO swollen, I hadn’t slept in days and I would cry so hard. The dentist tried another round of antibiotics and pain pills, but it wasn’t touching it.
The rehearsal dinner approached, and I honestly don’t remember much. My head hurt so bad, I shut my eyes and blacked out most of the night. I had no idea how I was going to survive the wedding.
Wedding time (Nov. 21st), Bright and early I popped a pain pill strapped ice to my face and prayed that I could get this special day complete for the newlyweds. About 2 hours before the wedding, I walked out of my mom’s room so swollen, the bride’s family member literally screamed when she saw my face, which obviously made me cry even harder. I felt like garbage. I called the dentist and begged for help, all he could say was rest and we will try a new antibiotic Monday and think about reopening the gums again to clear them.
I walked my daughter down the aisle with a huge knot in my cheek, but she looked beautiful, so that helped. I was supposed to look decent and I don’t even think I brushed my hair because the only time I had to get ready I was strapped to ice and oxycodone. I hunkered down and got the wedding over with. Not how I imagined I would feel when my brother’s big day. All I wanted was to celebrate and be in the moment with them. I worked so hard to make that wedding happen and I couldn’t enjoy any of it.
3am Nov. 22nd, I woke up and was done. I turned to Jared and said, “Please take me to the hospital.” Luckily my siblings, Jillian and Garrison, were staying in my house for the wedding so they could stay with the kids until people were awake to come over and watch them. We drove in the darkness to Gateway Banner. Jared had to go back to stay with the kids until we could find someone to stay with them (inconvenient since most family members were drunk/hungover or asleep from a late night at a wedding). I sat in the waiting room alone, listening to a middle age man yell at the front desk and at his girlfriend because his tummy hurt.. Had I been fully there I would’ve ripped into that little turd.
I got a message from my friend (who happens to be a nurse) and she called the hospital to see if they had an oral surgeon on staff, they did not. So, this amazing human, Stefani, drove at 5am on a Sunday all the way to Gilbert to take me to the hospital she works at (Osborn Honor Health). Checked me all in and got me the good medicine. When they gave me my very full dose of meds it was the first time in 3 weeks I wasn’t in pain, I can’t even explain how amazing that felt.
CT scan was ordered, and the nurses were very prompt and sweet, thanks to my hook up. I can’t even imagine how hectic it would’ve been had I stayed at Banner and needed transport for a dental surgeon. Which about 30 mins after my CT scan they called the doctor immediately and admitted me. There was so much fluid/infection from my chin to my left temple, they had me booked for the next surgery available.
The third party dentist arrived in my hospital room, he gave an apology, a card and restaurant gift card.. Figures, a gift card that I can’t use because chewing/eating isn’t an option.
Nov. 25, Dr. Bertz (My hero) performed my 1st drainage surgery. He went in through my cheek, scrapped out debris/infection, and put 2 drain tubes in my cheek emptying into my mouth. I was on lock down for quite some time and needed a lot of cultures and bloodwork to find out if the infection was in the bone or not. My blood pressure was very wonky throughout the hospital visit as well because I hadn’t been able to eat much for 3 weeks, they gave me special IV bags until it was a little better. My throat was feeling rough as well, they had to put a breathing tube in there for surgery.
Nov. 26th, my face was hurting from surgery, typical considering. The day was so long, and my cheek refilled with more fluid by 10pm. Pain was strong, they tried their best keeping on top of it, but it just wasn’t enough. I didn’t sleep that night; swelling was increasing rapidly. My heart was also breaking because I learned that my daughter had her first steps. I wasn’t there, I missed it, and yes parents miss these things all the time because of work or travel etc. but my situation was something that should’ve never happened. It cost me one of her major “Firsts” many more to follow little did I know.
Nov. 27th, All time high of swollen. Waited for my medical team, Infectious Disease Doctor and Oral surgeon to tell me the plan, it didn’t look like I was going home to host Mackenzie’s First Thanksgiving and that tore me up. So my friend Savanna (did I mention we were hosting out of town friends during all this madness too, ha-ha life doesn’t slow down) brought my sweet girl to the hospital so I could get a couple snuggles, it boosted my happiness so much.
We got the test back; the infection was confirmed inside the bone (Osteomyelitis). It just became so much more severe than we thought. The nurse I had said had I waited 3 or 4 more days I would’ve gone septic and died. I believe it too; I could feel that had I not acted any later this easily could’ve taken me away from my family forever. With the new diagnosis there was no way I was making it home for Thanksgiving.
I was told they would have to place a picc line in my arm for the next 4-6 weeks and I was unable to be discharged until the swelling went down and more cultures came back (3 day wait).
Nov. 28, swelling hard and so much pain. They ordered another CT scan to see if there were more pockets of fluid forming. At this point there was so much radiation in my body I felt like Chernobyl.
As if this hadn’t been hard enough, I found my whole body under a tarp for the picc line insert. I shed a few tears just thinking, wisdom teeth. This was all from wisdom teeth. How is this my life? Why is this happening? I miss my babies, my family, and ability to eat. The picc line went from the arm to my heart. The one good thing that day was Thanksgiving was brought to me, not in the food sense but my family and friends came to visit in the cafeteria, and it made the next piece of news easier to take in. Bonus points to Joseph Vazquez and Jonny Lawson for showing up in uniform
[cop/firefighter] making the hospital staff think I was in trouble with the law, thanks boys!
Surgery # 2, 7:30 am Nov. 29th. Draining my face again, adding another tube through my throat to remove fluid (yes, the cheek tubes were still in my mouth). They went in from the outside this time, the jaw joint was submerged in a pocket of infection (creating the lockjaw issues) Replaced the cheek drain while in there too.
The UA-ASU game was the first thing I attempted to watch after 6 days in the hospital (it was too hard for my face to even look at TV, I watched about 2 hours in 9 days, yes it was quiet and strange) I missed my Father-Daughter 6th year NFL traditional game, we had 50 yd line row 30 tickets for the Cardinals and Rams…
Dec. 2, My brother and Sis-in-Law returned from their Hawaii Honeymoon, isn’t that nice? We both got vacations haha Got to see them before they headed back north. Rumor had it that I was going to get released that day. It was a long dragged out day, just staring at the clock.
I was 108 lbs the day I had my wisdom teeth removed; I left the hospital 730 pm that night at 98 lbs. Only to drop down to 91 lbs within a couple weeks after from weakness and medication.
We waited for our training nurse to come to my house, 10:30 pm she arrived to give me my first of many doses through my picc line. I would get blood work every week and a nurse would come 1-3x a week for the next few months as we transitioned to this new lifestyle. The hardest part was I was unable to hold my kids with the picc line in. There is nothing I’ve experienced that gave such heartache. I couldn‘t pick up my baby in the middle of the night when she had a nightmare or hold her after a tumble, for weeks. We had my amazing sister step up and save the day. She really made herself available to us so I could heal, and the kids get loves while Jared worked and traveled.
Dec. 3rd, I had an appointment to remove my drain tubes, finally! It. Hurt. SO. BAD. The tube got caught on my jaw joint and they had to yank that thing like nobody’s business. BUT it was out, and I was so happy to not have a straw sticking out of my neck like Frankenstein.
We tried to enjoy the holidays (my favorite time of year) with all these IV meds in me, it made it very challenging. Although it did not stop me from dressing up my IV pole. We couldn’t travel outside of town due to many doctor appointments and if there was ever a reaction, I needed to be within state lines for the hospital care.
Most events ended the night with me crying, feeling like this whole situation has done nothing but steal moments away from me. I sucked it up, because my kids were watching, but those days were hard. I am not one to ask for help, I am pretty stubborn and as a mother, I put these children on this earth for ME to raise (alongside with my hubs) but it has never been anyone else’s responsibility to take care of my children, I could count on my hand how many times we used a sitter before this event. I really beat myself up that I needed to rest because the antibiotics were incredibly life draining. That any bump or tap on my face would knock me down and I wouldn’t be able to stop the pain.
As we filtered through medications my bloodwork hit an all-time low. White Blood Cell Count went scary low. I felt so sick I couldn’t feel any different, it was the new normal. I landed back in the hospital from feeling nauseous and achy. I was luckily discharged that night and the nurse would come over the next day to give me new meds to help raise my cell count.
They extended my picc line, it was supposed be removed Jan. 5th…
Lots of infectious disease, oral surgeon and pcp appointments, about 2-3 a week for 8 weeks.
Jan. 9thWe tested out a new medication, Neupogen. It helps raise cell count for cancer patients. My home nurse was packing up and all the sudden, face to table. Went white, shaky, my throat was closing. Anaphylaxis. She shot up some Benadryl through my picc line as Jared called 911, next thing I know there are 20 paramedics in my living room. All I could think of is the poor kiddos, they must be so scared. We were watching our friends’ kid along with Jack and Kenzie, luckily the firefighters did an awesome job distracting them by playing games as they wheeled me off, Jack cried then because he couldn’t see where I was going. At that point it was the nurses call to have me checked out. Released from Mercy Hospital about 2 hours later.
Jan. 13th I was required to do my new antibiotic at a hospital after my little allergic episode, which was also a long episode. Luckily, I had a hospital buddy to sit with me.
We decided that we will do 3 sedated procedures in hopes that my jaw would open.
Jan. 14th Sedated Steroid Procedure. Out like a light, they inserted goodies to hopefully open my jaw up, I was 17mm wide, average woman is 45mm wide. Yikes. It was uncomfortable but two days later I was just fine, all I wanted was to return to normalcy.
Jan. 21st Bloodwork order (Infectious Disease Doc) To determine if I can remove Picc line
Jan. 22nd CT Scan and Picc lie FINALLY REMOVED after 55 days!
Weight was at 91lbs.
Feb.13th Gallium Radiation Injection, nurse blew a vein and I got sick and passed out. (Woohoo! fun never stops)
Feb. 14th Gallium Scan, 2 hours in CT Machine to see if infection was still active.
Feb. 25th 2nd Sedated Steroid Procedure.
We paused the medical madness for my kiddos birthday celebration!
(Which was a nice break, despite being unhealthily 91 pounds)
Covid-19 hit when we were supposed to schedule our 3rd and final procedure, but it was dragged out. Then Doc had emergency during our next appointment so that pushed it back another two weeks to schedule. Finally, we sat down, and he told us these steroids are doing their job, it was time for a surgery. I was only at 17-19mm
June 9th Covid-19 nose swab test
June 11th I went in, alone (thanks Covid) to a {Hopefully} final surgery… Coronadectomy, he removed a piece of the jawbone to allow more movement, shave and remove the scar tissue and separate the muscle from the bone.
Dr.Bertz decided once he was in there, the bone might be okay attached, so he removed the old scar tissue and separated the muscle from my jawbone. The pain will stay with me as I do PT 2x a day opening my jaw with an exerciser. The tenderness of my temple will probably always be a thing because the muscle is from top to bottom of my face.
Surgery was successful as much as it could be, I felt more open and wider, but I have a long road of slow progress with exercises. Our follow up was a little disappointing, I only measured 23mm, I felt like it was much more, but I am working at it every day.
Aug. 17th Follow up, opened 31mm, next goal is 35mm by October 12th. Doc would ideally like to not even look into another surgery for at least 6 months if I can get to 35mm. Time will tell!
I didn’t post this blog piece for a while because we were attempting legal action, but after a dozen of lawyers looking into it, there just wasn’t enough evidence for negligence once the infection was known. It’s unfortunate that there is a huge pile of medical bills from Nov 2019 – Aug 2020, the many procedures and surgeries to continue to fix this nightmare, COUNTLESS appointments, babysitters and pain. It is what it is, and it could always be worse. It’s prolonged our goals to move into a new home and added some debt, but those things can change in time… It’ll be a constant reminder that I need to follow my gut and not always trust healthcare providers because, they don’t always have the answers or care to find them. Had I been sent to CT at the beginning of my pain we could’ve avoided everything, but I can’t change the past, we just move on to better days and pray that my jaw will open. I am lucky for Dr. Bertz, he has really made it a point to get me healthy and fix what needs fixin’ and the staff that have been very helpful.
For the whole Instagram story timeline go to my profile @shilohgiannini it’s a highlight story to relive every fun moment!
This phase will hopefully fly by (although 2020 has certainly dragged it on). One of many hard chapters in my life. We tend to deal with every hard event at once, this was no exception.
Bottom line: My jaw problem was the fair warning that 2020 was going to ruin everyone’s lives…
But on a more serious note, trust your instincts, get other opinions and except help even though it’s really hard to ask for. I pray for the day I can yawn, chew steak and get dental cleanings again. Could be years or never, time will tell. I am just grateful to be here, with my family. To think 9 months ago, I couldn’t hold my kids or stand longer than 4 minutes without getting sick. I’m getting stronger and making progress and that’s what matters.
Thank you for all those who really helped my family during this journey. Hard times always reveal true friends and I really appreciate those who were constantly messaging me, sending prayers and encouragement, getting me out of the house, helping me cope with the mommy guilt of not being able to hold my kids or even watch them alone for some time. It challenged me in many ways. Every angle of life was hit very hard this last year from relationship struggles, friendships, and health. SO thank you if you were there to console me, watch my kids, help my hubs, etc. I will never forget who was there for me when I needed it the most.
We will come back stronger than ever,
no matter what. 🙂