Updates while living at Mom’s
Monday 11/14:
Injuries: Waited all day for three-phase bone scan that turned out to be inconclusive. Hope to learn more at my ortho surgeon follow-up in Co Springs on the 23rd.
Transition Home: Patrick and Calvin packed up the room and we were discharged by 6:30. Drove home with Patrick and had a very successful re-entry to the house with happy dogs and humans.
Tuesday 11/15:
Transition Home: Slept a wonderful 12 hours and ate non-pureed food for breakfast/lunch (smoothie and breakfast burrito bowl)!
Follow-up Care: Woke up to snow on the ground and very lucky to have a willing Patrick and Calvin who already shoveled and salted before I woke up so we could go on our first outing to see a friend-recommended Dentist. Today was basically gathering information (hearing the story, reading my op surgery notes, and taking pictures). For next steps he’s going to consult with his oral surgeon partner and strategize. This surgeon is MD DMD and they work together on hard cases a lot—in his words, “cases a lot of people don’t want to take.” I may need to see the surgeon first or they may be able to propose a plan - the goal is to have an idea and questions prior to follow-up with my face surgeon on the 23rd. Super happy with this new care team!
Highlights: Ate mac and cheese for late lunch/dinner at the dining room table (!) and then relaxed, organized and unpacked--really bossed mom and Calvin around while I sat in bed--all the things I have been gifted, acquired, and/or brought home from the hospital and very slowly put on fake cat nails. We've been enjoying experimenting with non-alcoholic happy hour 🤗.
Wednesday 11/16:
Transition Home: Slept very well again and enjoyed a day with no appointments and mostly getting settled in. Took a shower and played with merlot hair dye (imagining I'm a superhero). Enjoying eating non-pureed food - Calvin made yummy pasta for lunch and we ordered Indian food for dinner and had Carolin over to watch the nuggets in bed. My nurses (mom and Calvin -- with Patrick's agreement from afar) cleared me for independent bathroom trips (woo!).
Thursday 11/17:
Follow-up Care: I had a great follow-up with my leg ortho surgeon. He is very good at what he does and also honest, trustworthy, and very funny. Overall he said my legs are healing great. I do have Heterotopic Ossification (HO) in my right thigh and there’s really nothing to do about it. Movement helps train and keep the other muscle tissue moving around the bone that's forming where it shouldn't, but won’t stop or reverse progression. There's no way to know how big it’ll get but if needed, he would consider surgical removal after 1 year. My right leg is still good to weight bear for short distances; it was helpful to clarify that the goal is not to build up to long distances yet. I can start working with my boot off in 2 weeks. My left leg cannot start weight bearing until early January (10 weeks post surgery is January 2) 😬. I'm having a hard time getting prescriptions refilled and coordinating with home health. Referrals from and general communication with the rehab center are not ideal.
Highlights: I can hot tub! He took my arm splint off and put a ring finger splint on, and gave me exercises to do for finger and wrist range of motion. I follow up with my arm surgeon follow-up next week. At home, we experimented with a new juicer and made some yummy green juice.
Friday 11/18:
Follow-up Care: Established with a new primary care doctor who is a pain specialist. He is great and seems to be the perfect addition to the team. We are increasing nerve pain meds to help with uncontrolled nerve pain in my face, which has been an ongoing issue. There's a lot of room to adjust dosage so we are working to find the sweet spot. My face pain is the worst of my pain and changes almost daily, perhaps a good sign nerves are healing but still very uncomfortable. In addition to constant pain from the cheekbones down, I have random shooting pains into my eye sockets, ears, and other new places... its all evolving. My doctor suggested other/better home health organizations to refer us to. A couple of hours after the PCP appointment, I had a recommended massage therapist come over for a consult; she worked on my neck, shoulders, and upper back and I will definitely continue to see her. I sure need it!
Highlights: Had a relaxing evening eating pho in bed with mom and Calvin waiting on us - he chopped all the pieces of mine up really small so I could eat it easily. Yay for comfort food and a relaxing family night!
Saturday 11/19:
Settling in: Mom and I snuggled in bed and had a lazy morning before getting set up to juice again using a friend's recipe; turned out very yummy and an easy way to get nutrients and can always add protein powder if I need more protein for the day. We've worked out our rhythm where I sit in my wheelchair at the dining room table and get help cutting fruits and vegetables but can manage the juicer myself (except the hard part, cleaning it). Then a friend from Taos arrived for the evening, such a lovely visit and very uplifting. Feels so good to hug on and spend time with people important to me!
Tracy's Reflection: Chosen family are incredibly important and I have an amazing support system that continues to show up for me and my family in ways I wouldn't have imagined. Immense gratitude.
Sunday 11/20:
Settling in: Nice slow morning at home with family and friend from Taos. Visit from my other mother, who delivered a key lime pie from village inn 🤗 - I'm trying to get some meat back on these bones and have a newly found sweet tooth! I've gained 5 back so far (sitting at 110) so slowly making progress. Eating mac n' cheese several times a week certainly does not hurt the effort. Patrick got into town and tried again to pick up my prescriptions, running into issues again but able to pick up a couple of things we needed (the saga continues). So nice to have him and the pups back! Another visit from chosen family to watch sports, which always fills my cup.
Monday 11/21:
Follow-up Care: Established with my new oral surgeon and he did an extensive exam, feeling each tooth and taking new images which he pulled up on the big screen and could show my skull from different angles. Good news: my mouth and bite are fixable. Bad news: he won't do anything for 6 months post-original surgery, which means waiting 5 more months. He will essentially have to re-break some of the healing fracture areas to realign my jaw. The team will include my new dentist and an orthodontist (tbd) to determine which teeth are ok to stay and which need to be removed and replaced. He wasn't too concerned about my loose teeth or the ones that might be dead/dying, he thought the loose ones might solidify or alternatively fall out and that it was ok to wait on the other ones until ortho/dentist get more involved. Keeping up with my oral care is really important to keep things healthy and prevent infection. He prescribed a new muscle relaxant to see if it may also help with my uncontrolled face pain. Still running into issues filling my pain and nerve med prescriptions but hope to get it solved with new PCP early this week - I am running out!
Legal: Had a great catch up call with our amazing, thorough, and caring legal team.
General home stuff: We were all exhausted and had another early, lazy night.
Tuesday 11/22
General home stuff: Pat and mom ran errands, Calvin working, I lounged in bed till 12 with a telemedicine appt mid-morning. It was very nice to check in with my behavioral health therapist from Taos for the first time since the accident. Our sessions typically include both talking and movement, including trauma release exercises (TRE), so it will be much better when I can finally see her in Taos; our check in was still very helpful.
Follow-up care: I got a call back from my primary care office about prescriptions and my mom spent hours dealing with Walgreens and my prescriptions are finally solved! There are no other home health organizations accepting patients so they sent a new referral to the original company.
Legal: My legal team stopped by for paperwork and medical records which is another frustrating lesson in this whole process; the visit reinforced my knowing that I have the right legal team on my side.
Highlights: While she was gone dealing with that (THANK YOU MOM), Patrick, Calvin, and I figured out how to safely get me in and out of the hot tub (big win!). Getting to be in the hot tub, weightless, and do my PT exercises in that environment is beyond yummy. Ended the day with a nourishing ayurvedic-based, diet supportive, food delivery and visit from more chosen family.
Wednesday 11/23 - Big day of follow-ups in Co Springs!
Arm surgeon: She was visibly thrilled and surprised at my progress. I am fully cleared for weight bearing using pain as my guide for how much is ok and to start working with finger mobility. My ring finger had ligament, nerve, and joint damage, so that will be the most difficult to rehab and is strapped to my middle finger for assistance (buddy straps as they call them). Next follow up in 4 weeks.
Face surgeon: A lot of information to process! He was running behind because he was on an urgent call with a surgery team taking care of victims from the recent tragic shooting in the Springs. I feel increasing gratitude to have him on my team and now theirs, too. He seemed generally happy with how things are progressing and reiterated how rare and severe what happened to me was; the procedure was super complicated and the extent of damage required plates on both sides of my skull. In his decades of trauma work, he’s rarely seen the need for this type of plating. The inner plates are difficult to see from typical scans, so unfortunately when establishing with my new dentist and oral surgeon, they did not know about the inner plates. According to my face surgeon, it may not be a good idea to fix my jaw alignment ("occlusion") after all because the extensive plating, and specifically the plates on the inside, will be very difficult and potentially risky to remove in order to rebreak my jaw to realign it. They can still fix alignment of teeth and the health of my teeth themselves, but without fixing jaw alignment it is hard for me to imagine what the end result looks like. He admitted that it is hard to know and could be an ongoing process for many years. He and my oral surgeon have worked together on cases before and will strategize about what's possible. From his perspective, the biggest risks to my healing right now are maintaining oral health as my upper jaw was broken into three segments, risking damage to teeth roots and insufficient blood supply. So, regular dentist check ins are key. Other next steps include a skin graft to remedy my lower left eyelid and eye droop and to remove some of the exposed wires and plates in my mouth. Some of the facial plates are shifting to be more exposed and are poking my lips; I'm currently using dental wax to help with pain. If the plates continue to shift and begin to cause more pain, I am to reach out. I asked about the possibility of fixing my crooked nose and in his words, "when I saw you, you didn't have a nose anymore and I rebuilt it from your hip bone," which to me means no, it is very fragile and I'm lucky to have a nose at all. He commented on the importance of keeping my nose moist using a humidifier and sinus rinse. I will do a CT scan and follow-up appointment in 4 weeks. Hopefully the surgery will happen then--and hopefully it is all in one procedure--or shortly thereafter. He is also able to attempt to reduce the appearance of scarring down the road.
Thursday 11/24 - Sunday 11/27
Thanksgiving: To start... I want to humbly acknowledge that I grow, live, work, and play on the unceded ancestral lands of the original peoples of the Apache, Cherokee, Diné, Očhéthi Šakówiŋ, Pueblo, and Ute past, present, and future. With gratitude, I pay respect to the land, the people and the communities that contribute to what today are known as the State of Colorado and State of New Mexico. I have so much to be thankful for - I can't say it enough, I have such amazing support on this journey and am continuously grateful for that as well as this incredible body that wants to heal. I have crossed paths, (re)connected, deepened relationships, and been supported by a multitude of individuals in the 6ish weeks since my accident. I also recognize the immense number of privileges I hold in being able to acquire the things I need to heal, eat healthy food, have high health literacy and coordinate my care in a dysfunctional system, among many other things...
Frustrations: Getting my referral coordinated with home health is not going well. As of Friday, we hadn't heard from them so tried calling several times and sent an email. I'm eager to get started with therapy at home! Nerve pain in my face is also an ongoing struggle; the nerve meds and muscle relaxant seem to have dulled the pain slightly but I'm still having constant pain from the cheekbones down. My skin is mostly numb but my fascia, connective tissue, and bones hurt a lot. I'm also having random shooting pains in my face that move around (sometimes to my eye sockets, sometimes ears, sometimes around my mouth and nose). I ordered new over ear headphones that are slow to arrive because my earbuds seem to exacerbate the shooting pains in the ears. The increasing and ever changing pain may be a good sign that my nerves are waking up and reconnecting, though it is very uncomfortable and painful to live with daily. My leg and arm pain are pretty well controlled if I keep up with pain meds, though I'm conscious of wanting to get off of them, but when I think bigger picture about the extent of damage and healing taking place I realize I am ok right now.
Walker use: Started walking around more into other parts of the house Thursday and even sat at the kitchen island, a previous very common meal and hang out area. Friday I transitioned to the walker with no arm rest (photo), which was kind of scary but felt safer and more right than I expected. The rest of my body was sure happy to be more symmetrical when I walk around. Now I'm consistently using the walker with no arm rest and more mobile around the house, even going in/out of the living room, which requires doing a step up or down in the walker--oh, the things we take for granted! This transition has brought on more soreness/pain in the arm but not that feels bad or wrong. Definitely have added icing my arm to the regular routine of icing legs on and off all day.
Other highlights and progress: All fingers on my left hand are starting to get back involved in typing (I realized this was happening without me consciously asking them to - pretty cool and exciting progress!). This, and using the walker with no arm rest, are things PT/OT would and should already be helping with. Patrick took me on a wheelchair walk up to the neighborhood park and back before he left town. Lots of World Cup watching. Sat outside on the deck with a family friend (really my other mother 🙂 - photo here) which felt very nostalgic and nice. Made more juice and a key lime pie thanks to the help of mom and Calvin!
Monday 11/28
Therapy: I can't believe I've been home two weeks already and haven't yet had any therapy! Frustrations with home health continue as I spent most of the day trying to get ahold of the intake coordinator. When I finally spoke to them, there was confusion about my referrals which did not make any sense. According to them, I need a new one sent. After discussing with mom, Patrick, and Calvin, we decided to ask my PCP for a referral to outpatient PT instead. I emailed to request this change.
Highlights: A family friend gifted us in-home massages so Calvin and I got to have massages today (mom tomorrow). Wow did we both need it!
Tuesday 11/29
Therapy: Still waiting on approval and referral for outpatient therapy from my PCP.
Other care: Telemed appointment with one of my most valued practitioners from Taos, who holds a variety of expertise, but today focused on energy work and calming my nervous system.
Wednesday 11/30
Exciting news: Hot tub purchase and great deal thanks to a very nice person (shout out to Robbie Gildea at Aqua Spas in Thornton)! Great people in this world. Cheers!
Therapy: Still waiting on the PT referral; so eager because I have approval to start working with my boot off on my weight bearing leg! I've been doing my PT exercises 3-4 times/day nearly every day since leaving the hospital and they are feeling pretty easy at this point. Ready for more!
Tracy's Reflection: I am doing a lot of my own care coordinating which for me entails making sure my providers are communicating, have the right/full information, and are on the same page/in agreement about next steps; organizing and trying to make sense of all of the—sometimes conflicting —information from different sources (providers, hospital systems) in addition to still working on getting access to all of my records and images; following up on prescriptions; following up to make sure next steps happen as discussed and continue moving forward; and following up on referrals and making sure insurance is settled, which can be tricky especially for out of state. I’m also healing intense and widespread trauma, doing my PT exercises 4x/day, working with providers from my past and , trying to live in the present and take one step at a time, continuing to sit in joy and laughter, and also thinking bigger picture (and wallowing when I need to). I don’t know that there’s someone who could do this for me better than me (with immense support and brainstorming team efforts), but wow is it an exhausting full-time job. The uncertainty and amount of information to process is also overwhelming at times--as are the bills coming in. To quote someone very close to us, “Wow that’s a lot of information to process but it is evident he knows his stuff. I also read in hope, in what he had to say that there’s just no knowing what the future will bring, and that to me is hopeful.” I return to this idea often these days ❤️
Thursday 12/1
Therapy: Still no PT! (full story--and some venting--below if you want to read)
Care coordination: Spent the majority of the day on care coordination efforts from my comfortable bed office (bed desk and view)
PT: started with a PT referral from my PCP—very exciting—and a suggestion to check with insurance. First called the PT office, they didn’t yet have the referral (can take up to 48 hours to process and then additional time to check insurance and get me assigned) so I followed up with PCP to acquire a copy via email and noticed it only lists my femur fractures (what!). Called insurance, after being bounced around, finally was told that the PT office is not covered and they would send me a list of those that are. Called PT again, asked them if they take my insurance, they do, asked if I can email the referral, no they don’t have email (WTF). Convinced them to let me send to their individual work email, sent the referral, let them know my injuries are much more extensive, they said I can only get treatment for the injuries listed. BLAH. Decide to move forward thinking I can get my referral updated later. A few minutes later I get a call back that the referral is not signed by an MD so they cannot accept it (my PCP is a PA), and they will call to get it updated. I also emailed the referral person about this and the need to update with all injuries, which she didn't think is necessary.
Oral surgeries and next steps: Called both oral surgery and dentist office to follow up on my emails from after my face surgery appointment, left voicemails. Got a call back from the dentist and convinced him of the urgency of a meeting between him, my oral surgeon, and face surgeon to get on the same page for additional surgeries. Scheduled a root canal for one of my front teeth for 11/22 and need to make sure my face surgeon is ok with that happening before he removes wires and plate(s) that are moving and poking my lips in early January.
Home stuff:
I'm getting into a morning routine that's feeling good. Everything I do takes so long! I start with puppy snuggles (like this), then move on to a few PT exercises that I keep my boots on for, then take boots and socks off, put scar gel on ankles and legs, then do my PT exercises that I like to do without boots on. While waiting for my leg scar gel to dry, I wash my face with a wipe, put scar gel on and check for any dissolvable inner sutures poking out (I've been gently removing them when possible - photo). Then put lotion on my dry skin (a lot sloughed off, especially in surgery areas), mom often rubs my feet with super salve 🥰, change clothes, and on to whatever the day brings!
We are really enjoying each other's company and figuring out how to do this unexpected thing we've been asked to do. Go team go! Among the many things I am grateful for right now, the World Cup happening when we are moving through this crazy experience, is just so lovely 😊
Friday 12/2
Care coordination: Emailed my face surgeon about the conversations yesterday and asked about root canal timing. Also emailed my leg surgeon asking for either a referral to the PT office with a full list of injuries or to contact my PCP office to make sure they have all of my records. Heard back a couple of hours later that the referral was sent and got a copy for myself (yay for movement!). Sent the referral to my PCP office to make sure they have it, too. Leg surgeon’s team also advised me on how to get my records from Memorial as I have struggled communicating with—really, hearing back from and getting my several requests processed through—the medical records department.
Home front: Juiced again and enjoyed hanging out in the kitchen. Did a little bit of work for the Human Services Department (updating a performance scorecard that I manage in time for a legislative hearing mid-December) — it feels good to do some work while I’m waiting on getting into therapy, and also cements that I do not have the capacity for my regular work schedule right now. Nuggets game, dinner, and NA champagne in the living room which is now very cheery with holiday decor 🙂
Saturday-Sunday 12/3-4
Home front: Very much enjoying watching World Cup every morning and afternoon. Patrick arrived and is back in town until Wednesday. We made more key lime pie and enjoyed the hot tub!
Progress: Patrick helped put the regular toilet seat back on; I've been using a booster seat toilet and was ready to advance back to the regular height seat (woo!).
Monday 12/5
Follow-ups and Care Coordination: Heard back from face surgeon that it is ok to move forward with root canal AND that I can start to drink out of straws (goodbye smoothie mustaches!). I had a good check in with PCP and right now, we are doing the best we can do for my face nerve pain with the meds I am on. We will continue to check in on pain levels but for now, keep doing what I am doing. FINALLY got PT scheduled to start Thursday! It was a bit of an effort to get them to recognize the number of injuries I have and that they need to be evaluated together to create a game plan; we can't simply look at and treat a femur fracture, for example, on its own. I feel good about the plan we have and moving forward with a full evaluation on Thursday. Decided to also ask my arm surgeon to send a referral for therapy for my arm and hand.
Progress: While in the kitchen, I practiced doing things--like filling up a measuring cup from the sink, scooting it across the counter while walkering to the microwave, and putting it in the microwave, taking it out when ready, and pouring water into another container--with supervision in prep for getting cleared to do it on my own.
Tuesday 12/6
Home front: Officially signed off to go to the kitchen by myself to refill my water bottle and even put electrolytes and/or trace minerals in as well as to refill my coffee. Small things but with the things happening over the last few days including getting PT scheduled, it feels like a lot of progress! Had a burrito rolling party with ingredients Patrick prepped and saved the insides for my meals throughout the week. Yum!
Care coordination: Making some progress on the medical records front finally, thanks to help from family.
Wednesday 12/6
Patrick left early to drive back home to Taos. This living in two different places business is hard!
Follow-ups and Care Coordination: Saw a new eye doctor and it was the first appointment out of the house with only two of us going, which I didn't think much about before leaving the house. Mom and I just figured that out while we were doing it... so many little things from where to leave me in the wheelchair while parking, to how to bring both the walker ande wheelchair, etc. etc. This was also the first appointment where I used the walker and moved around to different chairs for various tests. Again, something I didn't think about ahead of time but it just happened. My eye Dr is new in the office and specializes in contacts including for dry eyes, so she knows a lot about eyelid droop and the consequences, as well as my autoimmune disease called sjogrens which causes dry eyes. Overall my eyes are in great health, the prescription for my right eye has changed slightly but not significantly, and she was glad to hear my face surgeon is planning to try to remedy my lower eyelid soon. She gave me some good things to do to keep my eyes moist in the interim -- great to have the support and also adding more items to the daily checklist for care! Then had a behavioral/mental health therapy appointment followed a check in with the legal team regarding our case. Lesson learned that this is too many things for me to do in one day, I was spent and a bit overwhelmed by the end of it all!
New Pain: There's a plate and wires on the upper right side of my mouth that seem to be poking out more and my teeth are more sensitive in that area (they were already loose and painful but worse now). I am having trouble getting dental wax to even stay on because it is such a big piece sticking out. Need to follow-up with my face surgeon about this and try to get my CT scan moved sooner so we can see what is going on.
Thursday 12/7
Care coordination:
Spent much of the morning checking in on and organizing my information re: billing and insurance; I'm getting so much mail! I received a shockingly expensive air ambulance bill and other weird notices of things not covered by insurance. For example, I got a note that my walker with arm attachment which was ordered while in Rehab and therefore ordered by the Rehab Medical Director was not covered because I have a broken leg... seriously? Insurance is so frustrating.
It is open enrollment for 2023 health insurance, so I enrolled in new insurance for 2023 with efforts to keep continuity of care in tact for this accident; so difficult alone to get my primary providers in Taos covered on the same plan and now the added complication of many out of state providers. I re-enrolled in BCBS to not complicate/mess with my coverage for this accident, knowing I will have to pay out of pocket for certain providers when I go back to Taos.
I submitted paperwork to PCP for temporary disability handicap placard.
I'm beginning to explore options for getting bodywork and other holistic care covered; in healing from previous accidents and injuries these types of care have been immensely helpful to me and I have already had several of my providers recommend--but not yet explicitly write a referral for--massage and acupuncture. I asked my PCP for a referral.
Therapy:
Had my first PT eval and will start going twice a week as able. It was overall a very good appointment; we like the place and the PT I established with. They have the same pilates equipment (a reformer) that I have at home, so that's exciting! I haven't seen that before at a PT office. He was impressed and surprised at how well I am doing and basically said I am doing all the right things. It was both validating and anti-climactic to be told I'm doing it right and not given more to do. I also recognize this was an eval and that perhaps I am a daunting package to open and react to in a first visit (especially considering my referral listed one of my femur fractures and didn't explain the multitude of trauma). He was reluctant to begin working on weight bearing with my right CAM boot off, something I've been eager to start since officially having approval as of 12/1, and pushed the fact that we have to go slow with everything I have going on... I hope the caution is not a sign of what is to come and also appreciate the want for safely moving things forward. It felt a bit overwhelming then to me to recognize how potentially fragile [people think] I am and another reminder of just how much damage has been done.
We scheduled an OT eval for my hand and arm next week and PT also wants to help me find a certified hand specialist to work with.
The idea of seeing PT 2x/week and OT at least 1x/week for awhile is hard to imagine and a lot to ask of my care team/drivers (and me)!
Monday 12/12
Therapy: Walked across the room in a regular tennis shoe in PT! Yay for progress. Will start wearing my regular shoe more at home instead of the boot and see how it goes, usimg pain as my guide for when to back off and wear the CAM boot again. My PT could not give me a timeline or any idea of what to hope for with progression; again, getting the feeling that this is a bit unprecedented and hard to know what will happen. This response both makes sense and is frustrating. I'm hoping my surgeon will have more to say in Thursday's follow up and upon reviewing xrays.
Care coordination and follow-ups: Turns out my PCP is not covered by insurance like we were told, urg.
Tuesday 12/13
Therapy: OT eval went well, finger/hand strength is close to normal and she gave me new finger range of motion and dexterity exercises to work on every day. The plan is to see her weekly in addition to PT twice weekly at least through January.
Wednesday 12/14-Thursday 12/15:
New symptoms: This week I started having a new odd sensation where when I have liquid in my mouth, it feels like there is liquid is on the outside of my left nostril and/or on my upper right cheek. At first it was only the nostril and now the cheek too. New nerve activity, perhaps?
Ongoing care coordination and insurance frustrations: Spent the rest of the week battling with insurance over referrals and approvals. So frustrating! It started with a call from the UC Memorial system, where I was in the trauma center and have continued follow-up care with my surgeons, asking for me to check on approval for my face CT scan that afternoon. According to the referral/benefits coordinator, I need a referral from my BCBS-assigned NM PCP (who I have never seen) to see my specialists in CO. The specialists they’re referring to are the surgeons that saved my life and who, of course, I need to continue seeing. This should be considered continued care related to an emergency and not a random choice as insurance is considering it. I need the CT scan for my face surgeon to see how well the plates in my face are holding, how my facial fractures are healing, if my nose bone graft is holding, etc. This will inform our next steps, both for an upcoming surgery to remove plates and wires poking me in the mouth as well as the planning my face and oral surgeons are doing with respect to my mouth and getting my teeth to match up. BCBS is treating my follow-ups with and for surgeons as if I am electing to see out-of-state specialists when really I need continued care with these folks until they say I don’t need to see them as regularly or at all (which could be a long time…). To make matters worse, open enrollment just ended for 2023 health insurance and I stayed with BCBS to not add complications. I’m exploring getting a case manager/care coordinator assigned to me from BCBS to help with denied claims, my attorneys are reaching out to make sure all providers know this is an active investigation/lawsuit, and I’m working with family friends/experts to assess if I have other options for insurance that may better meet my needs. I’m scared I’m racking up debt and going to get screwed when this is all over. I am also not going to let this BS impede my progress and will not stop doing what is best for my next steps, even though the costs are adding up without insurance coverage (providers charge less when things are covered because of deals with insurance companies). The insurance system is so messed up!
Good news: my face and oral surgeons are working together on a plan for my mouth that they both agree on, our new hot tub was delivered and set up at home in Taos!
Leg surgeon update: he is again very pleasantly surprised at my progress and has said I can start to put weight on my left leg on Christmas (!). I have HO now in both thighs at the femur fracture site, so need to continue working on the soft tissue with massage and movement.
Friday 12/16 - Tuesday 12/20:
Insurance/Care Coordination Saga Continues: We've been consulting with our network of family and friend experts. I am exploring getting a case manager/care coordinator assigned from BCBS who will hopefully fight all of my denied claims and help with that process. After talking to the robot—and and begrudgingly repeating my BCBS ID number several times because she can’t understand my new lisp—I finally get through to the case management line which goes straight to voicemail with the promise to call back within 24 hours. I have left voicemails on Friday and again today… clearly they stick to the 24 hour commitment. We have very helpful contacts with the New Mexico Medical Insurance Pool (NMMIP); they offer a separate insurance for folks with complex situations that aren't covered by traditional marketplace offerings. My needs for Colorado as well as New Mexico care complicates things and I’m not optimistic there is a way to meet my needs for care in both states, which makes the idea of returning home to Taos only harder as there’s no question I will continue to need to see CO providers (who saved my life!) for some time. The NMMIP folks are checking on coverage of my CO providers through their plans but after consulting with their network, think the best option is likely for me to apply for CO insurance by switching my residency as I am living at my mom’s after all. We are in the middle of exploring this option and the implications. Getting my CO providers covered would be a big win for care needs moving forward but will make going home to Taos difficult. SO SO complicated and frustrating and certainly not helpful for keeping my nervous calm.
Progress: I am no longer wearing the CAM boot at all on my right foot and am now sleeping with bare feet per my leg surgeon’s suggestions. I am increasingly mobile; I am going in and out of our sunken living room (which requires steps) without assistance, walking out to the car instead of using the wheelchair (see!), and walking out to the hot tub and get in/out myself instead of getting piggybacked by Patrick. PCP sent referral for massage with the hopes of getting insurance coverage and also filled out paperwork for temporary disability handicap placard which we will submit in the coming days.
Fun Update: I’m still having trouble eating most things, and still eating a lot of mac and cheese. We decided with a group of friends to have a mac and cheese cook off, which was the first social thing any of us have really done since the accident. It was so much fun and the competition was serious! We had 7 different mac varieties, all of which turned out amazing. Thanks to those who came for a really fun time!
Wednesday 12/21 - Monday 12/26:
Reflection: It is wild reading my last update and thinking about what has happened since then. I’ve made amazing progress and am so proud of myself! I’m feeling immensely grateful for all of the continued support that has helped me to get here and empowers me to continue to focus on healing. THANK YOU to everyone who has been part of this experience, from the very beginning to now. I see you and I appreciate you.
Surgeon updates:
Arm surgeon (12/21) very pleased with progress; my fracture is healing well and the range of motion in my arm and fingers is great. The numbness on my ring finger side of my middle finger may improve over time. I will continue to use pain as my guide as I continue to be more mobile. She has agreed to turn over follow-ups to my leg surgeon to reduce appointments.
Face surgeon (12/23) spoke with oral surgeon prior to appointment and they've agreed on a procedure called the LeFort in 6 more months (~June) to essentially re-break my jaw and fix malocclusion. I’m optimistic hearing they are working together, have an agreed upon plan, and that there’s hope for significant improvement with my mouth. I’m so missing the enjoyment of food! In a couple of weeks, he wants to remove the wires in my mouth that are sticking out and poking me, but likely will leave the plates as there is risk of other nearby plates moving when removing one. My right lower eyelid has lots of scar tissue that will soften over time and he’s still pretty certain a skin graft surgery will be needed to improve the eyelid droop but the surgery will leave a new scar so it is ideal to wait longer to see how much the scar tissue improves before doing a skin graft. We will revisit this in a couple of months. We talked about how well my face scarring is improving (I’m spending a lot of time putting on scar gel and massaging!); there’s a small part of the scar that’s black which he referred to as “trauma tattoo” (see here). This is caused by debris getting into the skin and will be permanent unless I do laser removal like one does for a regular tattoo. We also discussed that I’m feeling like my teeth are still loose; he suggested that it might actually be the pieces of my mandible (jaw) that aren’t fully set and that the segments themselves may be what’s moving.
Care coordination:
Root canal (12/22) canceled due to extreme cold in Denver and have rescheduled for 1/10. We will also discuss a plan for general dental care, possible removal, and realignment of teeth now that we have a plan for oral surgery; I’ve got several painful teeth/gum areas that I’d like assessed.
FINALLY heard back from BCBS and have a care coordinator/case manager assigned to me. I explained my situation big picture and gave specific examples of denials that have happened; she is speaking with her medical director and supposed to call me back 12/27. If she doesn’t, I have a direct number and will call first thing 12/28. I’m planning to loop in my attorney for the conversation.
My current thinking is that I’ll stick with BCBS NM for 2023 coverage for now and see how the conversation goes. Still mulling over a CO insurance switch but it feels like a big challenge with moving back to Taos. We have two other family friends to consult about insurance drama if the call with the BCBS case manager does not feel promising.
I’m increasingly thinking about the move back to Taos, especially now that additional procedures and surgeries are more clear. It looks like end of Jan/beginning of Feb may be possible. I am planning to start reaching out to Taos providers to get my network established there, and reorganize some of my follow-ups in Denver/Co Springs to make it easier on us to travel for follow-ups ~1/month. I wonder when I can drive and if it’s time to start looking for a new car?! Perhaps by the time I’m ready to move back I will be able to drive there myself 😏
Other updates and progress: No longer wearing CAM boots at all! Somehow I’m 1.5 inches taller than I was before… now 5’4.5 instead of my previous 5’3. Officially walking with both legs (video here)! Not full body weight on my left leg yet, but first few days of weight bearing are going really well with minimal new pain, primarily experiencing feelings of aching and weakness. I’ve used both the crutches and the walker, but for now sticking mostly with the walker because it allows me to carry things in my walker bag. I’ve added doing laps around the house to my PT routine. The amount of time spent on my routine of PT/OT, scar care, and meds/supplements management at home is a little overwhelming but so important. Again very grateful for the time away from work to focus on healing. We had a really nice and mellow holiday at home with just the five of us 💜
Tuesday 12/27 - Thursday 1/5:
Reflection: I sound like a broken record, and yet, again am surprised and happy with how much has happened since last updating this website! My healing is progressing extremely well and no one expected things to happen so quickly. Perhaps I can in some ways thank my previous injuries and long healing journeys for my ability to focus so intently on healing, the integration of holistic and non-Western healing modalities and healers in my care network (including the number of supplements that I have, for so long, consumed daily and continue to refine with my providers), and my mind/body/spirit connection that I’ve worked so hard to hone.
Visit home: I was able to go home to Taos for a short visit over the transition to the new year; thanks to mom for all the help getting ready to travel, to Calvin and Silv for traveling with me, and to Patrick for all his work to prep the house and make sure things were ready and comfortable. It felt SO good to be home and I can picture myself back there full-time, easily. Yay! Another wonderful gift. One of the days home I stayed by myself while the family went skiing and was able to make myself a smoothie, stoke the fire, and comfortably move around. While I wasn’t able to coordinate with everyone I wanted to see while in town, I was able to get together with several of my close friends and family and it felt very heartwarming; I can’t wait to move and settle back in to life in Taos.
Insurance Navigation: With no luck getting communication or support from the care coordination/case manager promised to me by BCBS, I checked in with yet another friend of a family friend who has experience with insurance issues. She has worked as a patient advocate for years, has a background in critical care nursing, and is now retired. She's offered her help for free with navigating the situation. Once again reminded of the truly amazing and passionate people out there! She has already been immensely helpful in getting my claims filed properly as accident-related and life-saving and will continue to do this as I need continued care to heal. I feel like a weight has been lifted and am more optimistic about the situation now that she is on our team.
Progress:
Driving: My leg surgeon and PCP have both given me approval to start driving short distances. I know it will take time to feel comfortable, I expect some fear and anxiety to come up, and at the same time am eager to gain back more independence and a sense of normalcy.
Walking: I’ve progressed quickly with my walking abilities and am now mostly using one crutch to get around. I have been able to move forward by listening to my body, watching for increased pain (soreness is different and expected), and slowly moving from walker to two crutches to one crutch. So wild to think I only started putting weight on my left leg a week and a half ago! Soon I will likely make the transition to a cane.
Meds and Pain Management: I’m starting to wean off of my muscle relaxants and pain meds and that is going pretty well so far. I am conscious of my high pain tolerance and having lived with chronic pain for most of my life, and seek to keep pain under control while at the same time reducing meds.
New Massage Therapist: I established with a new amazing massage therapist recommended and referred by my PCP. I will see him every other week and will hopefully get insurance coverage. I am excited about this addition and feel this is very important to my healing and continued improvement.
Friday 1/6-Thursday 1/12
Move home: Patrick was in town 1/7-10 for a final short visit before I move home. Weird to think we might soon be past the time when we’re living apart as I’m working on all the logistics to move home at the end of the month! It’s certainly a bittersweet mosaic of feelings - excited and happy to be at a comfortable point in my recovery to move home, ready to settle in to my old/new life in Taos with my partner and our animal family, missing my CO family and friends ahead, lots of pondering and dreaming about what life could/will be like. I'm working on setting up my network of care for the move home.
Care Coordination: We’re working on getting insurance approval sorted for a follow-up surgery 1/19 to remove mouth hardware. Insurance still hasn’t approved my initial surgeries (WTF!) so continued care is becoming a challenge. Luckily I have a patient advocate working diligently on my behalf to get things in order; I’m so grateful for her collaboration, time, and expertise on my case and know I couldn’t do it without her. How on earth do people navigate this nonsense! I’ll also see my orthopedic surgeon in Co Springs on 1/26 for a follow-up for both my legs and arm.
Other progress:
Car and Driving: I’ve ordered a gently used 2021 4Runner on CarMax which is set to be delivered in Denver on 1/31, with the possibility of an earlier delivery. Another positive step in getting back to “normal”! I have still only practiced driving on residential roads and not yet out with many other cars or traffic… getting there!
Mobility: I’m primarily using a cane for walking these days and enjoying the independence it brings with being mobile AND able to carry a few things. Using one of my dad’s old canes until a fun one I ordered arrives.
Therapy: I continue to see PT 2x/week and OT 1x/week. I finally got new PT exercises from my therapist so am continuing to build strength and range of motion in my legs and ankles.
Pain management: I’m still mostly experiencing aching in my left arm, legs, and ankles with some additional pain in my knees and ankles with the new exercises. I've been able to significantly reduce my pain meds and am completely off muscle relaxants, continue to reduce opioid intake, and will continue to stay on nerve pain meds for the foreseeable future as my face pain continues to persist.
Massage: I saw my new amazing massage therapist again and wow do I feel significant improvement upon walking out from my appointments. He’d ideally see me for 1.5 hours 2x/week… here comes another insurance battle.
Teeth: I was scheduled for a root canal on 1/10 and because of the widespread nerve damage in the area, we decided to wait. Per his conversation with my oral surgeon, I will likely lose some teeth in the summer jaw reconstruction surgery, so he did some “viability tests” on the tooth and surrounding teeth to check nerve feeling and thought it wasn’t conclusive enough to do the procedure and wanted to save me the money. He spent almost an hour talking to us, did two X-rays and didn’t charge me!
Friday 1/13-Saturday 1/21
Move home: Things are looking in order for me to move home on 1/30! Mom and I will drive my new car home together and she’ll stay a few days to help me settle in and hang out, then family from ABQ will come visit, bring her back to ABQ and she will fly home. Of course, any of these plans are subject to change — we continue to stay adaptable these days. I can’t believe I’m at this point where I can safely and comfortably move back home, finally!
Care Coordination: We are still in ongoing battles with BCBS NM for coverage of my original care from the accident and subsequent, necessary, continued care. I’ve received some staggering bills ($1M in the first 24 hours of my care… and that’s only what I’ve seen so far), and I know it will all work out with my patient navigator, attorneys, and other family/friends offering to help push things through. We are getting close to the point of needing to get the insurance commission involved and will do that when the timing is right. Switching much of my weekly care to Taos will help with 2023 care, though the ongoing care needed in Denver and Co Springs for all of my injuries will continue to be a fight. I’ve been able to set up my network of care pretty well in Taos, with a chiropractor who specializes in myofascial work and chronic pain as well as nerve trauma, a massage and craniosacral provider, pain injection specialist, naturopathic/Ayurvedic doctor who specializes in movement therapy and energy work/bodywork and nutrition counseling, and a new PT. I’m working on grouping my follow-up appointments in Colorado for the first week in March.
Other progress:
Community: I had a friend visit from out of town last weekend which was so lovely to have the company and just relax and hang out; we had a couple of other close friends over for a ladies night on 1/13. I’m making lots of plans to see people while still in Denver - got together with my sisters and nephew, saw my aunt and uncle, and have other family and friend plans in the works between now and 1/30.
Therapy: On 1/13, I graduated from future OT appointments as there’s not much more they can do for my hand/fingers. I have exercises I will continue to do in the hopes that mobility, dexterity, and feeling continue to improve. There is a certified hand specialist at my new PT office in Taos, so perhaps will see them for additional care. On 1/17, I brought a list of all 30ish PT exercises I’ve been doing and he helped me cut them back a bit. I’m increasing my stationary bike time every day and am almost at 15 minutes!
Mouth: I had a follow-up surgery with my face surgeon on 1/19 to remove hardware from my mouth. We decided to go forward as planned despite insurance denying the care. My surgeon even had a peer-to-peer with an MD from BCBS in attempt to get my pre-authorization approved, with no luck. BCBS is suggesting that anyone in network could take on my follow-ups, yet the surgeon had to make a game time decision while in surgery about whether to remove an exposed plate in my mouth. He decided to leave it in and only remove one of the screws (see here if you wish) as there are so many plates close by and structural integrity of the plates is a concern as the work done on my face is fragile and still healing. We are hoping to wait until my big jaw surgery in the summer to remove the plate and will continue to keep an eye on it. My surgeon was pretty clear in my appointment that he should continue to be the one to see me and he will help us with BCBS where possible and also try to schedule in ways to reduce costs. He was very frustrated with insurance barriers to my continued care; I, too, am frustrated and shocked insurance would want such a precarious situation to be taken into the hands of someone else, or that another surgeon would even feel comfortable to take on my case. I am 100% sure that I will not be seeing someone else for follow-up care. My surgery recovery has gone surprisingly well, with limited new pain and much more freedom with eating thanks to the wire removal. My teeth still only match up in one place, but with no wires for food to get caught on I can manage more chewing as long as I can cut up the food into small bites.
Car and Driving: I drove for the first time on the roads on 1/13 with no problem, and basically driving everywhere since. We picked up my new car on 1/17 and I’m so happy with the choice I made. It feels very safe and comfortable to have a bigger car. I drove on the highway to my Co Springs surgery, with mom driving home of course. It is feeling surprisingly normal!
Mobility: I’m continuing to progress with mobility, using a cane at home when needed and walking without one most of the time. See my 3 month progress video here. When I go anywhere out of the house, I use the cane… goodbye to the crutches, walker, and wheelchair! I even went to Costco with my mom on 1/20 and walked all around. It was a bit overwhelming at times, but then I reminded myself that I did not need to apologize for or even feel like I was in anyone’s way… just be.
Pain and symptom management: My pain is feeling very under control, though I am feeling more sore and tired the more I start to do. I am really feeling exhausted, and perhaps it is partially the after effects of surgery, trauma that may have been brought up from being back in the hospital, and general expected fatigue from increased mobility and doing more things.
1/22-1/30 Last Days in CO and Move Home
1/24 Last Denver PT appointment: He was very pleased and also sad to see me leaving. He said we have met my goals of improving range of motion, and I should now start focusing on strength and not needing to use the cane (which I am close!).
1/26 Orthopedic surgeon appointment: My femurs and ankles are healing very well, he was again quite shocked at my mobility and progress. He doesn't think we need to continue checking in on my ankles or femurs unless I have increased pain or issues with the HO at my femur fracture sites. I can even now sit comfortably, for a short period, cross legged! My left forearm, unfortunately, is not showing more healing (x-ray here), which he said is not uncommon for forearms so we will keep an eye on it. I am having pain in my arm and after talking about it, realize I have been kind of ignoring the pain as insignificant compared to what I have been through and having had pain most of my life. It could be that the bone is dead or does not have sufficient healthy bone tissue to regrow. I asked if we can just leave it be, and he said that the hardware (plate) will eventually fail as it is meant to help the bone heal and not replace it. Therefore, I will likely require another surgery and bone graft. We will check on the arm again in 3 months and sooner if pain increases. There's no change in my weight bearing or activity with this new information, so that is positive.
Progress: I walked up the stairs for the first time in the last days at mom’s house! It was much easier than expected (video here).
Insurance Battles and Medical Records: While getting all packed and ready to leave over the last few days, I was also hit with a lot of new medical information and worked with my patient advocate on our first appeal for my January 19th mouth surgery. I received horrific photos of my face upon arrival to the trauma center and pre-surgery (will share upon request only). I also received the airlift minute by minute report of the life saving care provided; it was both helpful and intense to read. I was in my car by myself for some time before they got to me and was freezing upon the touch; they were worried about hypothermia. It is amazing to see all of the intricate and deliberate care that was provided before I even got to the trauma center almost 3 hours post accident... care that has also not yet been approved by insurance. I’m once again beyond grateful to have a patient advocate on my team helping me to process, organize, and fight the insurance battle that simply does not feel fair or just.
Community: Lots of seeing people before leaving town - had a lovely sushi dinner with mom, Calvin, and Silv; a Vietnamese dinner with my cousin’s; had my mom’s very dear friend and basically my other mother over for dinner; had a going away party/bday for some of my closest friend’s since we were 9 which was a very fun way to see people and have a last hoorah (photos dated 20230129 here). Then my sister came over to see me before we left town in the morning on the 30th. Feels very mixed to be leaving such a yummy community but I know I also have one waiting for me at home.
Move home: Somehow we were able to fit all of the important things I needed to take home in the new car, thanks to the team jigsawing effort. The pups like the roomy back seat 🙂 I drove all the way fro Denver to Taos and felt comfortable doing so; it felt like another huge milestone and taking back some power over the situation. We also met up with a state trooper in Walsenburg to pick up my license plate. I’m grateful he was willing to do that for us instead of us having to go see my car and deal with the likely additional trauma associated with doing so. His good friend was involved in the accident and in removing me from my smashed car; he was happy to see me doing so well. I was very happily greeted by Patrick - see here.
