**NEW WEBSITE: https://www.tracykathryne.com/**
(as of 1/28/24, this site is no longer up to date. Please visit new website to see most recent posts)

Updates from the Trauma Center at Memorial Central in Colorado Springs and Acute Rehab Center at Swedish Medical Center in Denver can be read here 

Updates while healing at home previous to what's posted below can be read here

General reflections from my hospital experience and transition home: This experience has reinforced what I already knew, that the healthcare system is broken. There's an extreme lack of record sharing, lack of communication, lack of proper billing and insurance system coordination overall, and confusing scopes of work (case management/social work, specifically). Overall, I have had amazing care from incredible, passionate, and warmhearted individuals who I believe want to provide the best, thorough care that everyone deserves. The system, itself, is broken. 

[this section has been reorganized with the most current update now at the top and I’ve added a section on this page called “current state” where you can easily see injury healing progress and next steps I hope it’s helpful!]

Saturday January 6th - Friday January 19th

Medical updates:

Mouth:

• 11/17: Oral Surgeon: He was again so happy with how things are looking and doesn’t necessarily need to see me again until either 1) my braces come off or 2) my orthodontist thinks I need to see him. We took an x-ray (see here) that shows lots of new healthy bone from the grafting, especially the white arch across my upper jaw and around my sinuses. Woohoo for stability! He thinks there is sufficient bone for an implant or two on the upper left side when the time comes.

• 11/17 Orthodontist: Now have one wire across the top with the goal of expanding the left side and compressing right side to address cross bite and straighten out the top front teeth. Rubber bands top to bottom have increased in strength and now should try and wear all 5 day/night instead of 3 day and 5 night. Now I have 4 “buttons” on the inside of my teeth to hook the top to bottom bands - the rubberbands and buttons are irritating to both my teeth and to my tongue! Here’s a picture of the new set up. She didn’t see same as oral surgeon re: bone where I lost a tooth but thinks a graft is possible to do an implant. She’s trying to create space for this but may not be a full tooth.

• I keep waking up with gritted and/or grinding teeth, it is hard to tell what exactly it happening but it is startling. Because of my top to bottom rubber bands and shifting bite, we can’t use a mouth guard yet and there isn’t sign of damage to my teeth. It seems that this started post surgery and wasn’t a behavior I unconsciously did before.

Eye:

• Still having a lot of light and reflection sensitivity and continue to use eye drops throughout the day and ointment at night to help with dryness. I haven’t noticed any improvement and am eager to see my surgeon again on 1/23.

General:

• My face is generally looking much more symmetrical and it’s easy to see now that much of the swelling has gone down - see here for healing photos almost daily since surgery.

• Home PT: I’m slowly getting back into my PT workout routine and adding more exercises, and fighting through increased knee pain with all of this. The past week, with our attorneys in town and a full day deposition really took it out of me and I didn’t get to do my PT routine as much but this week am back at it and even did yoga this morning, which felt amazing.

• I’ve been really struggling with fatigue that is hard to get past. I know I am healing, growing new bone, and building strength and that rest continues to be important.

• My pain levels have increased since 1/11 deposition day, maybe in line with what my provider warned me about, that recounting my experience in a deposition (and even more so if we have to go to court) might exacerbate my symptoms, or could simply be what would have happened anyway. Hard to say. But, Friday 1/12 I caught up on phone calls and following up on things in the morning, went to an appointment, then felt good enough and even excited to run errands, and by the time I got home I was done for. I was really struggling to get my body comfortable for a few days, with intense back and ribcage instability, pain, and dysfunction making most movements hard. I was able to get it to calm down a bit on Sunday with muscle relaxants and by Monday was able to do my workout routine again. The pain is still there but dulled and I’m able to keep it under control with meds, a calming muscle balm, heat, rest, stretching, and hot tubs.

• 1/12 Chiropractor appointment: we did a full evaluation and had, for record keeping reasons, to put a pain scale number on every body part - that is so hard! My pain isn’t constant in any one area, and because I have so much pain all over, my brain can only listen to what is talking the loudest in any given moment - and I think I have gotten good, for better or for worse, as tuning out a lot of my pain. I can only listen to so much at one time; I think my body actually protects me in that I’m able to tune out much of the pain and discomfort.

  • In two weeks I am seeing another type of chiropractor who specializes in the very upper cervical spine, basically where the skull and spine connect; this provider has helped me significantly from previous injuries to the head and neck. She will evaluate my upper neck for any misalignment and may be able to help with my vision issues; I hadn’t thought about it before but now understand that until I have this evaluation and know what is going on with the upper cervical spine, I shouldn’t try to ski (damnit!).

  • We also discussed that my left hip continues to come out of place and it might be good to have an orthopedic eval and even MRI of my hip. In my appointment on 11/19, my hip was out again; we’ve discussed some changes I can make in how I sit, sleep, etc. and hopefully that will fix the issue but it could be something that needs further assessment.

  • Understanding my increased pain: One of my weekly providers shared a theory about my increased and nearly debilitating back pain post-deposition. Your kidneys are responsible for regulating stress hormones, which also can impact muscle tightness. I had a huge release of stress hormones during and after the deposition which could be at least partially responsible for the increased pain and spasm.

  • PTSD: We also discussed the trauma response to seeing my body and being essentially reminded of what happened, and that this is a complicated type of PTSD. It isn’t trauma from a singular event, but rather the daily reminders. The trauma also continues in everything I’m having to navigate and I may require specialized therapy to treat this when the time is right.

• Taos orthopedic doctor finally accepted me as a patient so I am in for an initial evaluation on 2/21 - feels great to know I’ll be in the care of someone local for all of my orthopedic injuries (left arm, both femurs, both ankles).

• I continue my weekly appointments and am up to having a total of 7 appointments some weeks; it is a lot to manage, but all of it feels important. I’m often having to make a last minute call to decide which appointment to move to the following week because it is simply too much.

General updates and happenings:

• Lawsuit: The 1/11 deposition went better than any of us expected; we both did great and are happy to have it behind us. I was asked questions for 5.5 hours! It was exhausting and I felt mostly comfortable in my body and focused on what needed to be done, then when I was sitting in the background watching Patrick’s deposition I slowly but surely started to notice more pain throughout my entire body. My hackles were up, with pain between my shoulder blades, in my neck, head, and jaw, an aching ribcage, I couldn’t get my legs comfortable, and even my arm was aching. It didn’t quite feel real when it was all over. We are now in the process of discussing and setting up a mediation for a possible settlement in the next few months; let’s hope it continues to move smoothly! We have such a wonderful legal team and it was nice to be with them in person even though we were all working hard and a bit stressed.

• More grief: Our dear friend Ross, passed away mid December. His celebration of life was in ABQ on January 13th… Patrick and I planned to make the drive down and back for the event, knowing we also had to go back Tuesday for appointments. The morning of the service, we would have had to leave at 7 and both woke up feeling like driving down and back was just too much for us. We were so sad to miss our friends celebration but also need to listen to our stress levels and bodies.

• Missing out: It’s hard to keep missing out on things… but boundaries are good. Yet, it is so hard! and I think having the need to set limits so much over the last 15 months has made my gauge feel off - I am so tired/sad of missing out on so much and now it’s like I don’t know when I should push myself or when to set boundaries. We’ve missed out on fun, travel, family get togethers, celebrations of all sorts, the ability to focus on grieving losses, concerts/other fun plans. I am a little in my head about it and breathing through and sitting with what feels right sure helps. Slowness and tuning in are important.

• With the deposition and prep work, constant travel to Albuquerque, and intense healing that I’m going through, stress levels are high. Our dogs have picked up on it and are acting out with somewhat destructive behavior; we’ve come home to toiletries thrown about the house, body scrub eaten and thrown up… Now whenever I leave the house they get to come with me for a little adventure.

• Insurance: In addition to continuing to following up on several appeals to have my dental related care (~$10,000) covered and reimbursed by my BCBS medical plan, I have now received several notices that components of my 10/27/23 eyelid repair and 11/27/2023 jaw reconstruction were not, in fact, covered. So far, the notices don’t mention a charge associated with the parts that weren’t covered, but I have followed up with BCBS representatives to see if I need to do anything. I’ve been informed that I should start formulating appeals for these but haven’t yet done anything as I’m waiting to hear from different representative to see if they agree. UGH! It never ends.

• After my mouth appointments on 1/16, I felt an overwhelming sense of sadness and couldn’t quite put my finger on it. After reflecting more, I realize it is grief - having providers that I get close to, trust with such big and important procedures, see nearly weekly for months, and then our relationship changes so abruptly, is hard. It is like a member of my community is no longer there. Of course my oral surgeon will always be there for me and it isn’t like I will never see him again, but it brings up grief. And new grief experiences reignite the old ones. I also think there’s something about having periods in this recovery where I get to know what is happening, what to expect, have a timeline, and when a milestone passes, I am back in a period of unknown and uncertainty. These shifts are challenging. The milestone I just passed, of having the big jaw reconstruction and healing well enough to be cleared to chew already, is huge! I can feel all of the excitement and happiness and also, the grief and fear that comes up with more unknown. What I do know is that the journey continues!

• It has been so wonderful to be able to chew! I’ve eaten things I haven’t been able to eat easily since Oct 16, 2022 like bagels, tacos, quesadilla, salad. It is a funny brain exercise to think about chewing, something I rarely thought about before the accident - just like I re-learned to walk, I am re-learning to chew. And, my chewing ability will evolve both now as I get more comfortable and also as my orthodontic work continues to improve how my top and bottom jaw line up. Exciting stuff! 

• Disability benefits: I finally got ahold of the person I spoke with back in December about my disability benefits application. On 12/14/23, I spoke with someone who said they needed more information for my application and if I emailed it to her, she would submit it that day. I sent it on 12/5/23 and never heard back. After several attempts at following up via phone calls, voicemails, and email, on 1/17/24 I finally got ahold of her again. She had not submitted the information or even opened the email, apologized causally, and submitted it finally that day. It will take up to 6 months for my application to be reviewed. SIGH.

On the horizon:

• 1/23: ABQ Eye Surgeon Follow-up

• 1/24: ABQ Atlas Orthogonal Chiropractor First Appt

• 1/30: ABQ Orthodontist

• 1/31: Taos Pain Injection Specialist (it has been 3 months since I’ve seen him!)

• 2/13: ABQ Orthodontist

• 2/21: Taos Orthopedic First Appt

• TBD week of 3/11: Denver for mediation for lawsuit settlement

Thursday December 21st - Friday January 5th

Medical updates:

Mouth:

• 12/27 Oral Surgeon and Orthodontist: Positive report from Oral Surgeon, all looking good from his perspective. The Orthodontist was also happy though less enthusiastic I think because the ball is all in her court now and she has a lot of work to do. We adjusted my rubber bands again, see here, adding more bands to sleep with.

• 1/3 Orthodontist: She put in stronger arch wires both top and bottom, and added another rubber band for me to wear during the day.

• My understanding of the biggest concerns / challenges and what the plan is are:

  • There’s a gap between two teeth on the top left side where I lost a tooth in the accident and she either has to close or try to create space for an implant. She’s not sure she can do either. We are waiting until I get an xray, likely 1/16, to see what the bone quality is like above the gap.

  • I have an underbite and cross bite. The stronger top arch wire should help bring the top left side in front of my bottom teeth. Rubber bands (see here) will hopefully help move teeth into proper alignment.

• Nose breath smell and potential sinus infection has gotten a lot better finally. I’m still having a lot of dripping and drainage coming out of my nose (which I cannot feel), and some congestion but that’s all expected.

• Pain is not horrible, though with a changing rubberband situation every week the pain increases and shifts after the adjustment and then when I’m finally getting used to it, I go back in and she changes it up again. I think it is also more painful because my upper jaw hasn’t fully healed so we are essentially pulling on unstable bones. It also creates muscle tension and headaches, and I’m having increased nerve pain which comes on as a surprise and goes away within ~30 seconds; this feels like a sharp/shooting pain, intense itching that can’t be scratched, or a burning sensation. I feel it on my cheekbones, around my nose, and on my upper lip. I’ve also started having strange hot/cold sensations where it feels like liquid that’s in my mouth is on the outside of my right cheek or dripping out of my right nostril. And I’m still completely numb on most of my face; numb on the outside, with deep fascia, muscle, and skeletal pain.

• Still on a full no chew diet, so I have to swallow everything without chewing at all and I can use my tongue to break things up on the roof of my mouth. We’ve been able to start making more fun foods, like homemade saag paneer and butter chicken, pho (first blended up and now chopping up into small pieces), curries, and moist cakes.

Eye:

• Light and reflection sensitivity continue to negatively impact my vision. I continue to do eye drops all day and ointment at night to combat dryness but nothing seems to help or improve the symptoms. I was told this is due to dry eyes and there's not much else I can do but wait. I haven’t tried night driving since 11/7 (wow I can’t believe it has been that long!) and feel ready to gain the independence back but am not sure my nervous system will approve. I think Patrick and I will experiment with driving a short distance in the next week and see how it goes. I’m eager to see the eye surgeon again in a couple of weeks.

• I’m unhappy with the way my eyelid looks as you can still see much of the red inner rim of the lower eyelid; my eyes are drawn to it when I look in a mirror or see a photo. Quite dissymmetry, though I realize we are not symmetrical beings to start with. And I know I am my worst critic, I just expected it to look and feel different by now.

General:

• 12/21 restarted PT: I was frustrated to have to fill out all the same paperwork again, but understand they have a system they have to follow! We decided on a consult model rather than weekly appointments like we had been doing. The goal is to get me back in the shape I was in before these last two surgeries and progress from there. I’m starting back slowly from the same list of exercises I progressed with before, so I know what to do. The battle of being disheartened by working back up and the monotony of it all vs being proud/happy to be able to workout begins!

  • Win: I biked a whole 15 minutes which I haven’t been able to do since eye surgery! Not much but not nothing either 😊

• Pain: As I exercise more, I’m having a lot of knee pain exacerbation on top of my frequent hip, back, rib, shoulder, and neck pain and instability. My face and head also hurt sometimes and I have to be careful of the positioning of my body.

• 12/29 Co Springs Face Surgeon check in via telemed: It was very nice to catch up with him! What an amazing guy. He basically just asked for an update about all injuries, surgeries, pain levels, etc. We’ll schedule another follow up in April-May to discuss next steps, if any, for scar treatments or other facial procedures to continue to improve my appearance.

• I continue my weekly appointments with all Taos providers and remain full of gratitude for the amazing, supportive community of experts on my team!

  • One of my providers cautioned me that as the lawsuit moves forward and I’m forced to talk about what happened, I may experience a setback or an increase in pain. She has seen this with other patients and I was thankful she would raise the concern with me so I can pay attention and take care of myself. I already feel some of this with all the work we’ve been doing lately and am taking extra care to use the tools I have to help regulate and calm my nervous system.

General updates and happenings:

• Over Christmas weekend, Patrick and I were planning to spend a couple of days in Albuquerque to see family. I decided to stay home and rest as I just wasn’t feeling up to it as we got closer. I was still having the nose breath smell, lots of blood/mucous/snot dripping from my nose, and very fatigued and in pain. It was a hard decision but I needed to rest/heal and not have more activity.I was missing everyone but also glad to be listening to my body.

• Patrick and I have had so much going on since my jaw surgery. I had to submit more information to social security for my disability application (and still haven’t heard back!), the lawsuit really amped up and we are prepping to be deposed on the 11th in Taos, we have traveled to Albuquerque weekly, I’ve had more insurance stuff to work on (some of it actually very helpful and promising for 2024), my schedule keeps changing and I’m doing more even more care coordinating than before, and we celebrated two holidays. The more I rest I still don’t feel refreshed, but I think there’s just a lot going on right now and it will calm down. My nervous system is on high alert these days because things I need to handle keep unexpectedly popping up or taking longer than I expect.

• Christmas and New Years were lovely, though also felt a lot like any other weekend day without obligations. It has been such a strange year and though we have a lot to be grateful for, I am worn down and feel like life is very out of my control. It is difficult to make plans in the present or future as I don’t know what will come up or what life will be like, I still can’t work and don’t know when I will have the capacity to, and it is isolating when your life is consumed by seemingly unrelatable things. I so love the opportunity for reflection that a new year brings. This year brought a lot of joy, community, healing, growth, and fun - though I hate to admit I feel envious seeing people’s social media reflections filled with fun, travel, and adventure that Patrick and I have and will continue for some time, to miss out on.

On the horizon:

• 1/11: Deposition in Taos

• 1/13: Celebration of Life for a dear friend in ABQ

• TBD: Calvin and Silv come to visit!

• 1/16: Oral Surgeon and Orthodontist in ABQ

• 1/18: PCP check in (it’s been a year!) in Taos

• 1/23: Eye Surgeon in ABQ

• I’m working on switching orthopedic care to Taos Orthopedic Institute and will follow up on Monday. I’m due for an arm follow up so hope to schedule that soon.

Saturday December 11th - Wednesday December 20th

Medical updates:

Mouth: JAW SURGERY HEALING AND NEXT STEPS

• Symptoms:

  • Swelling continues to decrease, and I feel like this last little bit will stay with me for awhile - I’ve been taking daily photos and posting them here.

  • Soon after my last post, I started smelling a really bad smell. I checked with Patrick, he confirmed that he also smelled it too. We thought I just had horrible breath from the splint or general post-surgery healing (its been bad for the last 2 ish weeks), but I kept being confused about if it was coming from my nose or mouth… I would smell it when I was brushing my teeth or swishing mouth wash. So, we did some testing and it was in fact coming from my nose breath (so weird and disorienting!). More info and surgeon conversation below under the 12/15 and 12/19 appointment updates.

  • 12/10 my splint started to break as we were leaving the house to go out and cut down a Christmas tree - the first we’ve had in our home (moved in May 2021). The splint popped off the back right side of my teeth and I quickly popped it back on with my tongue - it was pretty scary, of course. Then it started happening more while we were out and about. When we got home, I reached out to my surgeon and sent a video of what it looked like back in place and he said he wasn’t too concerned and ok to wait till we see him 12/13. So that was positive but I also wondered if he was just being sensitive to the fact that we live far away. (videos and photos here)

  • I’m having lots of headaches with varying patterns (base of neck, sides of head, forehead, etc.). Also feeling a lot of pressure in my head, sometimes painful and sometimes just like my ears need to pop.

  • Tension, burning sensation, and tightness around scar tissue, both the scar tissue that’s newly developing from this surgery and the deep scarring across my face from the initial injury.

  • I’m sure some of the sensations around my scarring is also nerve pain. I feel general burning, tingling, and tightness on most of my face on and off.

  • I’m back to having pretty consistent ghost tears, snot, drool - I realize I came up with this term and not sure it really explains what I mean. Like a phantom limb that one feels but isn’t actually there. It is like I can’t trust my own sensations.

  • I am also completely numb, so I can’t feel actual tears, food on my mouth, drool, or most regularly dripping snot/mucous/blood from my nose.

• Pain control: Stopped taking Oxycodone as of 12/16, and I continue needing Tylenol and Ibuprofen on board. Pain is manageable and generally getting better, though it is evolving as the next steps with my mouth evolves. It’s not like I’m just finished with the surgery and good to go with resting/healing, every week something changes in my mouth and I have to adapt.

• Appointments:

• 12/13 Orthodontist: She was happy to see me and it was hard for her to tell with the splint on if she would be able to fix my occlusion (bite). She confirmed the splint was breaking and we scheduled for me to see her after the Oral Surgeon appt later that day in case he removed the splint. We also set up appointments with her every week after seeing him for the next many weeks. She is a really wonderful, caring, and silly person and I am grateful to have her on my team!

• 12/13 Oral Surgeon: He said it was ok the way the splint had broken and if I can stand it, he’d like to keep it on another week. The half of the splint on the back of my teeth isn’t doing anything really so if that part falls off it’s ok. Next week I’ll see him for splint removal and then Orthodontist for a continuous braces wire across the top teeth and top to bottom rubber bands. He also said that the tissue looks even better than last week and I’m cleared for hot tub, all great news!

• 12/14 I was working all day on lawsuit stuff (which is emotional and challenging) and got a text from the Oral Surgeon that after he and the Orthodontist talked and brainstormed about my case, they’d like me to come back tomorrow to get the splint off and start working on occlusion (bite). So, once again, we rearranged our schedule to accommodate. We were also in the middle of a big snowstorm so a little worried about roads but luckily it cleared up by the afternoon.

• 12/15 Oral Surgeon + Orthodontist:

  • It was fun to see these two in action together. I really like them both and can see now why they work so well together.

  • Nose breath: they said it is probably from the mucous/blood/etc in my sinuses post surgery, but could be an infection, so we will likely start antibiotics. Then the surgeon took my splint off (photos here), which immediately felt like a huge relief, started looking at my teeth and decided maybe my tooth is actually infected and causing the smell. This is a tooth they have said many times likely won’t make it but we want to keep in as long as possible. So, I sign a waiver and they start prepping to take my tooth out. At this point my nervous system is on high alert but I’m working to breath through it and the surgeon is a comfy person to be around, so that helped. Then, he decides not to even remove it because the segment of maxilla that the tooth is in is all very mobile and it could be detrimental to healing, the tooth doesn’t present immediate risk or look infected, and hopefully is truly a sinus infection and not the tooth.

    • I left with a Z-pack for antibiotic (originally was going to go for a stronger one but decided to hold until we really need it), and instructions to take mucous relief, and start doing a gentle netti pot and blowing my nose with my mouth open.

  • Splint removal: This is sooner than they like to take splints off so the segments of my maxilla (upper jaw) are more “spongy” and moveable than they typically like - so definitely no chewing at all and have to be really careful — but they are taking advantage of the softness to try and fix occlusion (underbite and right side crossbite).

  • Orthodontics: Started with top to bottom rubberbands on the right side and a continuous wire across the top which will hopefully bring the front tooth on the left side forward (it’s been behind my right side front tooth since the accident).

  • Overall review: The surgeon is still very happy with how things look, that it is level across the top is a huge win and the other parts we will just keep working on and see. Another surgery is possible on the mandible (lower jaw) if we can’t fix occlusion with orthodontics.

  • My bite won’t be perfect, at least for awhile. It is hard to imagine how the braces will help straighten everything out and fix the bite. I am still on the no chew diet, and will be for at least 3 more weeks, so am not sure what eating will feel like with a lot of improvement but the bite still off.

  • I had a bad lisp and difficulty talking with the splint on an now I have my voice back! Here’s a video I took right after the appointment.

• 12/19 Oral Surgeon: He was so happy with how much progress has been made in my bite since just Friday. He wasn’t concerned about the potential sinus infection or smell still happening because, as he has said many times, during surgery my sinuses filled up with mucous and blood and they will continue to liquify and drain. The z-pack antibiotic he gave me will continue to work for another 5 days so he felt ok with how things are. I looked up maxillary sinus volume after the appointment and was shocked that they hold 10 ml! He did say he thinks it is possible to make my bite perfect and reiterated the likelihood of removing at least one tooth and possibility of another surgery. As he describes it: My maxilla was put in the right plane in space (in relation to my skull is how I picture this), and my mandible is not in the right plane in space so naturally my bite will still be off but we don’t know yet by how much or if it will cause issues.

• 12/19 Orthodontist: She wasn’t as happy as the Oral Surgeon but still said it was looking good and she did see progress. She added another top to bottom rubber band, this time on the left side of my mouth and coming from the suspect tooth which worried me. We will only use a medium band for this side and watch it closely.

• Next steps: Continue weekly appts with both Drs: 12/27, 1/3

Eye

• I had a second opinion 12/14 that I moved cause it was in Albuquerque and just felt like too much. The second opinion is now 1/4 and I’ll see my original eye surgeon 1/23.

• My right lower eyelid is still very droopy looking to me, and you can see a lot of white underneath my iris as well as the inside of my lower eyelid. So, to me, it looks about the same as pre-eye surgery.

• There hasn’t been an improvement in dryness and my vision is even worse than before jaw surgery. I think swelling is playing a role in that and maybe also trauma response. It is hard to say because facial swelling has improved significantly, but vision has not. I’m also starting to notice that my pupils do not dilate at the same rate. See here.

Arm

• I had a follow up at UNM scheduled for 12/22 and I decided to cancel this and try to get in with a Taos Orthopedic Dr that I’ve heard great things about. It would be wonderful to have someone in town instead of making the ABQ trip. UNM has also been difficult to navigate and I’ve been unimpressed with my quality of care (I know this is not intentional or anyone’s fault exactly).

Weekly appointments in Taos

• Back seeing providers this week after several weeks off, it’s hard to have to take a break and then have only a week before holidays and more time without seeing my people. My self consciousness and discomfort with the smell and drainage from my nose makes it hard to be comfortable and relax in these appointments 😔

• Starting back with PT finally this week which feels funny because I'm not in a place to exercise much quite yet, though hope to start slowing soon. I am hoping to get a plan for ski season conditioning and see what else she thinks is needed for my rehab.

General updates and happenings:

• My daily routine has sure expanded again with post-surgery needs and mouth care. I was back to having a lot of pokey wires in my mouth so lots of wax application which turned into rubber band application after splint removal on 12/15, med tracking and taking, tracking my nutrition and water intake, monitoring my weight, cleaning and caring for my hip incision, mouth rinse after eating, on top of all the eye stuff I was already doing.

• I feel like Pig Pen from Peanuts, with a cloud of stink following me everywhere 😂🫣  and as I am able to be out in the world more, this is sure holding me back from wanting to be. This, combined with the regular but random drip from my nose, are sure affecting my self-confidence. I recognize that the smell is stronger for me than anyone else, and I do know it will pass.

• It was hard to need pain meds and also want my driving independence back, but at the same time not feeling ready to go places. When I finally stopped taking opiates, I had the realization that I still am not comfortable driving at night due to my eyes and it is hard with it getting dark so early. There’s a lot of holiday activities going on in town and I yearn for more community involvement but when I really listen to what I need, it isn’t to push myself to go out, it is to stay in.

• It is ok for me to hunker down at home with our sweet animals and Patrick when he can, and lean into as much rest as possible (while navigating all the things I am still navigating and taking care of every day!).

• I’m in another period of realization that - holy shit this is still my life, and the end of this “phase” is nowhere in sight. Holidays are hard in general, especially when important people are no longer with us, as is the end of the year and period of reflection that comes with it. I also think that I was so looking forward to having this surgery behind me and not sure what was ahead, but instead of a period of calm after a storm it is just more storm… I am burnt out and exhausted.

• We found out this week that a dear friend passed away 💔 It has been a difficult week!

• Eating - I remain on the no chew diet for at least 3 more weeks. I have been monitoring my nutrition and caloric intake and haven’t lost weight so that’s very positive.

  • We’ve had a few more food deliveries from friends (thank you!) and are trying our best to make fun food to eat. We’ve made several yummy soups and curries and on 12/9 I ate a whole box of Mac and Cheese, so I’m back on my bullshit haha I’ve since eaten entire boxes to myself several times, even experimenting with adding veggies and green chile. YUM. Also made a key lime pie without the crust 😊

  • As I look for ideas of recipes online, I am finding a lot of “soft food diet” lists but what they list are mostly not appealing and out of touch with my personal experience. In addition to writing a book about my experience, I am now daydreaming about a soft food diet cookbook in my future!

• Lawsuit - we’ve had and will continue to have lots of work to do and long meetings in prep for depositions mid January. It is intense and time consuming and hard on my heart! More will be written about this when I can...

  • I am so grateful to have providers who brainstorm with me about tools to help me stay grounded, in my center, and with a calm nervous system during times of stress and especially in the middle of deposition.

• Social Security/Disability - haven’t heard back from the person I sent my stuff to! Need to follow up but so far have had too much else on my plate and not enough energy to do so.

• Insurance - I spoke to the person at BCBS NM who was assigned to help me with my dental related claims, and she is working on getting them processed through medical as accident-related. I’m hopeful I will get some money back! I only have this help because my cousin knows the BCBS NM CMO, which I am very lucky to have and thankful for, and at the same time it hurts my heart to imagine what people without connections have to deal with.

Thursday November 30th - Friday December 8th `

Medical updates:

• Mouth: JAW SURGERY HEALING

  • Symptoms:

    • My lips have returned to nearly normal size and the swelling has increased in my cheeks, even up very close to my right eye. Swelling seems to have plateaued on Thursday 12/7 and started to decrease slightly on 12/8. I’ve been taking daily photos and posting them here.

    • I’m continuing to keep my nose moisturized with saline nasal spray and also using a decongestant saline spray to help with congestion. I’ve had several occasions blood starts dripping out of nose and continues on and off for hours or even days; I was told to expect this so it isn’t worrisome, but is a deterrent from being out in public because I can’t feel that it is happening.

    • I’ve also started having a weird thing happen where when I’m swish prescription mouthwash or salt water to clean my mouth out, liquid comes out of nose. This is happening in both nostrils and not every time, but regular enough to cause concern (see below for what the surgeon had to say).

  • Pain control: I’m still in quite a bit of pain and keeping Ibuprofen and Tylenol on board as much as possible, and continuing to take my oxycodone prescription. I’ve been able to space out the oxy more and more and hope to feel comfortable enough to go off completely in the coming days. I’m able to go throughout the night without it and sleep very well, though after getting up and moving around I notice more pain/discomfort, so am taking it some throughout the day. One of my providers shared a helpful perspective about pain medication, that they can help keep your body in parasympathetic mode and if you push yourself to go off before you’re really ready, you could find yourself in sympathetic (fight or flight) mode which can increase inflammation and even delay healing. This was helpful for me to hear, no need to go off completely until I am ready.

  • 12/6 surgeon follow-up: he was extremely pleased and surprised by how well I am doing… “better than expected,” he said. My upper palate is “golden.” We need to continue close monitoring of healing and progress, particularly on the left side where I lost a tooth in the accident but as of right now, everything is looking good. Here are the answers to some of my specific questions and next steps:

    • Liquid coming out of nose concern: Drainage is good, the sinus connection is likely due to the bicuspid on the left side that he was worried about. This is a tooth that likely won’t make it but is there as a placeholder. If at any point I feel like I’m getting a sinus infection, he needs to know immediately because that would be disastrous. It is unlikely for the “hole” between my tooth and sinus to heal on it’s own as long as the problematic tooth is still there. When the time comes, he can easily remove that tooth and figure out a solution. Time will tell

    • Is my face fragile/when can I resume sports? My face is not fragile, per se, but if I were to fall and hit something or catch an elbow or who knows what, it could put a dent in my face. So, 2 months for more risky activity like skiing and volleyball to give my face time to heal.

    • How many plates do I now have? 5. We will do x-rays in 3-4 weeks and then he will show us all of the plates and screws.

    • Biggest concern is left side and we have to baby it, we’re not out of the woods and need to watch carefully, but so far the tissue looks great.

    • Next steps: I'll see him weekly to closely monitor healing and progress. He will likely remove the splint on my upper jaw in 3-4 weeks, then same day I will need to see my orthodontist to add a single top wire to my braces and tight rubberbands connecting top/bottom jaws, which I will have for a number of weeks.

• Eye: swelling from jaw surgery seems to have exacerbated my vision challenges, so I am struggling quite a bit especially starting in the afternoon before sunset through the end of the night. It is hard to find a place in the house or a way to have the lights comfortably so I’m not getting a lot of halos and visual interference. Blah! I have a 2nd opinion oculoplastic surgeon appointment next week and am not sure whether to go if I am still pretty swollen or push it back.

• Next steps:

  • Oral Surgeon Weekly: 12/13, 12/19, 12/27, 1/2

  • Orthodontist: 12/13 for a quick check, then same day oral surgeon removes splint (tbd), then every 4 weeks for 6+ months

  • 2nd opinion Oculoplastic surgeon: 12/12 (depending on swelling)

  • Arm follow up: 12/22

  • Oculoplastic surgeon: 1/22

General updates and happenings:

• Generally, I have been resting and healing well, with wonderful company in mom and Patrick <3. We’ve had a couple of food deliveries from friends which is super sweet and helpful! Mom left on 12/7 so Friday was my first sola day at home while Patrick was at work. It was so yummy to have my mom here and I’m lucky she has the flexibility (and support) to be away from home for 2 weeks!

• I’m paying good attention to my body and what she needs, which mostly involves leaning into rest, recovery, and snuggling up at home. I know my energy is precious and needs to all go to healing right now. It is also an emotional time with holiday season plus being back in the hospital for surgery and having lots of memories come up - letting the grief waves flow through as they need to.

• I’m feeling a bit overwhelmed and trying not to overdo it. It’s hard to balance! I’ve had several things come up right at the same time as surgery and just taking it one step/day at a time without doing too much (reminder to self: most things can wait if I ask for what I need!):

  • Social Security finally contacted me 11/20 and left a voicemail, I was able to get ahold of someone on 12/4 and was told basically that they needed more information from me in order to even process my disability application. So ridiculous! I submitted my application in very early Feb, spoke to a few people on the phone over the last months and had been told my application was already in review. Luckily I have my medical provider information very well organized and it was relatively quick for me to re-format it to submit to them. I emailed it to the person I spoke to on the phone on 12/7, haven’t yet heard back from her so may have to follow up by phone again. She told me she would process my info within a day of receiving it, then it would take another 3-6 months to hear if I am approved.

    • I prioritized getting this done first over the other items in this list.

  • Insurance: I’m finally starting to hear back about dental-related insurance appeals. The communication and even a check that I’ve received aren’t (at first look) matching what we submitted so I need to set aside some time to make sense of it and figure out who to ask for help.

    • Background: My dental plan hasn’t covered hardly any of my dental-related care (orthodontist, root canal and bleaching of front tooth, gingivectomy and inlay) and I’m out $10k for the care I’ve received. We submitted for this care to be submitted to my medical plan as accident-related, because it should be covered this was per my BCBSNM plan handbook. Dental offices don’t submit to medical plans, so my patient advocate helped me submit.

  • Lawsuit: The legal process moving forward with more info needed from me and Patrick as well as many meetings getting set up. We are lucky to have such a wonderful legal team to help us through this. Some of the information we are being asked for by the other side feels so invasive!

Saturday November 25th - Thursday November 30th: JAW SURGERY UPDATE

• Surgery went well on Monday 11/27; I was taken back to the OR around 7 am and finished around 3-4 pm, so a total of 6-8 hours (we think). They decided to keep me overnight in the hospital for two nights to finish a course of IV steroids to help swelling and monitor my pain levels. I also had nose trumpets to help alleviate congestion and keep my nasal cavity stabilized; the team monitored these and took them out over the first 36 hours post-surgery (photos here). I finally made it home Wednesday around 2 pm.

• While in the hospital, I was visited each day by members of the surgical team, including Ear Nose and Throat and Oral and Maxillofacial surgeons. I think there were a total of 5 surgeons in the team.

• I also heard from my primary oral surgeon after getting home Wednesday and it felt good to be checked in on and to hear his summary of the surgery again. Here’s what he shared (very jargony!):

  • My face had more fibrous union (scar tissue) and not a whole lot of bone to bone healing, which presented some risk though was not unexpected. They were also able to remove all of the plates they wanted to during the surgery.

  • My maxilla, the upper jaw, was cut into three pieces to realign the teeth. They had to put the maxilla in the place where we would get the most optimal contact in the most compromised area, which is the left side, and thankfully that's where I had good bone that they could work with. So, the maxilla is now in a good place, plane and space, but it's not in the perfect position relative to the mandible.

  •  My orthodontist has been made aware of the situation and believes she can work with my braces to align top/bottom jaws and get good occlusion over the post-surgical phase of orthodontic work.

  • Then they had to reconstruct the three other buttresses. The piriform rim, which is the rim next to the nose, and then the buttress on the left and the right side. They were able to salvage enough native bone from other places to reconstruct the buttresses. So the right side is in really good stead, the left side and the right side in the center where I have the sinuses there was just no bone at all so they harvested bone marrow from my hip and used bioactive material with my native bone and a special collagen carrier to bone graft the anterior maxilla.

  • So now we have bone everywhere we want it, or at least we have the potential for bone wherever we want it, and it should be nice and strong.

  • The most compromised area was between the bicuspid and the molar, where I had lost a tooth in the accident. The area was completely filled with scar tissue, so they cleaned that out and filled it with native bone and covered it with a bone block.

• Pain/recovery:

  • My pain is kind of intense but well managed with pain meds and ice. I’m having a general aching in my skull/jaw, my lips and face are pretty swollen, and lips are kind of raw and blistery due to the wires in my mouth and the swelling. My face and lips are also very numb but with a deep ache; a weird combination that I am very used to by now. I look like I paid a lot of money for lip injections so that’s a fun silly perk of all of this 😊 (photos here)

  • All of this makes eating kind of difficult but I am getting used to it and it’s getting easier over time. I'm back to using MyFitnessPal app to track my weight, nutrition intake, and help make sure I am getting what I need for optimal healing. 

  • My nose needs to stay moisturized and is often dripping blood, which we can expect to continue for the next several weeks. I’m not able to blow my nose for at least 4 weeks and using lots of nasal spray to keep it moist.

  • My hip is also pretty painful where they did the bone graft.

  • I’m sleeping well!

• Next steps

• Oral surgeon follow-up 12/6

• I'll wear the splint for three or maybe even four weeks depending on healing

• Then we'll take the splint out, and continue with my orthodontist for post-surgical phase orthodontic work

• My diet is no chewing for 6 weeks at least, making sure to get good nutrition and clean my mouth after every meal. We'll gladly take any blended soup delivery or recipe recommendations!