Sorry it has taken me so long to update Faith's blog! I started to update it this morning and just lost 2 hours worth of writing!! Ughh - let's see how much I can rewrite from memory!
Not a lot has happened since we returned home to Colorado on July 6th - just got settled into our routines of Faith's care and trying to manage her pain, which sadly has been far more than we've ever experienced with her previous jaw distractions.
Our dog Lola was very excited to see Faith and curious about her head gear. Thankfully my friend Ashley and her daughter Jadyn kept Lola for over 3 weeks while we were gone and brought her home when we got home.
Lola greeting Faith and my friend Ashley with Faith 💖
The daily routine, morning, noon, 5pm and bedtime - she gets 1-2 boxes of formula
through her g-tube, plus an antibiotic, muscle relaxant, anti-reflux and pain meds.
I had planned to go back to work when we got back and gave it a shot, but after one day back in the office, I realized it was too much trying to balance Faith's daily care and work and so I decided to go back on full time leave (FMLA). There's a lot of changes happening at work right now as well, so I'm really grateful that I had the sick time and am able to just stay focused on Faith throughout this whole jaw distraction process rather than feeling stressed about that and worrying about her too.
I've also been taking advantage of the time at home, spending some time for myself - meditating and exercising as well as getting caught up on a lot of home projects: getting my fence painted (thanks Fred!) my garage door painted, my deck railing fixed (thank you Dave!), and on and on an on and spending some time with family and friends. For those of you who know me from work, you wouldn't be surprised to know I'm tracking it all with sticky notes on a Kanban board, "To Do", "In Progress" and "Done", keeping it simple!!! 😜
Weekly XRays, Lots of Progress!
As part of the procedure, we go to our local Children's hospital for a weekly xray so that Dr. Gordon can see how things are progressing. The progress has been quite good and we are seeing her airway get larger and larger, which is the whole goal. I try not to get too excited about it just yet as the headgear is pulling on her jaw and really the results need to be great when her jaw is at rest - we won't know that part until about 6 months after the surgery when we do another sleep study. But you can definitely see a lot of progress in the pics below...
Hanging out in the waiting room - this is about 3 weeks into turning her pins,
already looking amazing with the changes to her upper jaw and her nose.
Takes about 5 mins to get the 3 pics we need each week.
July 14 - 3 weeks in, the black space showing her airway is what we are really focused on,
but you can also see the cuts in her lower jaw just behind the front incisors if you look closely -
there is about a .5 cm of darkness that is where the new bone is growing.
July 25 - you can see just how much more space there is at the back of her mouth and nose,
plus the gap in the lower jaw bone is more noticeable now.
We had a video call with Dr. Gordon on Friday and talked about her progress and the timeline for the pin turning. We were roughly 5 weeks post surgery and he said he is very happy with how her profile is looking and her xrays have been looking good as well. He asked us to continue turning her pins for one more week (I wasn't sure if he meant a week from that day or from the following Tuesday, but I figure it's just a few days apart, so we'll just play it by ear). Once we stop turning the pins he wants to let it sit for another 2 weeks and then we can come back for the final surgery to remove the head gear and for him to do some additional touch-ups - to her cheekbones and shaping the lower jaw a bit. I mentioned we need to take Anthony off to college that week and he said we can easily schedule her surgery around that, for him leaving the head gear on longer is just better for letting the new bone consolidate longer.
So - that means we are looking at her final surgery the week of August 15th, probably around the 17th or 18th and then coming home the following Mon/Tuesday. It's all very tentative and I need to call the scheduler back to get an exact date.
Pain, Pain and More Pain
Unfortunately, the pain from this jaw distraction has been far greater than any of Faith's previous 4 jaw distractions. Typically Faith has gotten off of all pain meds after about a week or two post-op, including even Tylenol and Motrin. We are always given way more Oxycodone then we've ever needed in the past and I'm usually trying to figure out how to dispose of it a year or so later! This time around though, they gave me this nifty medicine disposal bag that has charcoal in it so you can pour any leftover meds in it and it absorbs the active drugs and then you can just throw it away, safely. I was really excited to have that, but sadly we have used all of the Oxy this time around and we still can't seem to manage her pain.
The beginning of the pain started a couple weeks ago as her lower teeth started running into her upper teeth. We have to distract her jaw far past where we want it to end up so I had to call Dr. Gordon and get directions for lengthening the vertical rod in front of the headgear to lower her bottom jaw to allow it to pass the upper jaw. That took another week or so and her teeth were constantly hurting and I really couldn't figure out much to make it any better. If you've had braces and can remember the pain every time you got them adjusted, that is what she's going through - but I'm "adjusting" or turning her pins every morning and every night - so there is no break in the pain.
Today she woke up moaning and screaming a bit in pain and said it was up to a 10 (on a scale from 1-10 and in the past her pain was well below a 5, this time around it's been over a 5 most of the time). She has NEVER, EVER said her pain was a 10 before - and this kid has a very high pain tolerance. It's a bit gut wrenching for me to deal with. I had a really rough day yesterday trying to get someone to help us with it and I started to fall apart with the unwillingness of some of our local doctor's offices here to even see her. Our 2 most helpful doctors, her pediatrician and her ENT are both on vacation this week and they are the ones who really know her, know everything about why we've been going to Cincinnati and now Dayton for all her surgeries and have been very supportive and helpful being the local doctors over the years and have been very willing to work with Dr. Gordon as needed. With both of them being on vacation, their offices were not willing to see her and we ended up going to the emergency room to get help.
Basically, I ran out of the Oxycodone on Saturday night, but even before that, I really haven't been able to do much that has helped. During the day I alternate Motrin and Tylenol, but the Tylenol has not been working at all to alleviate the pain, so I've been trying to give her Motrin every 6 hours and save the Oxy for night time. I really don't like giving her narcotics/opiods, but I also know how important it is to stay on top of the pain, and at this point, nothing is really cutting it.
Let me back up a bit, Faith's pain comes and goes and sometimes she seems just fine - her pain goes down to a 2, which is very bearable. We've been able to get out and do a few things, but most of the time she is just laying on the couch or in her bed at home and I think it's worse when she is just laying around, probably because she is able to be distracted from it for short periods of time when we get out. We actually went to a concert at Coors Field Friday night, to see the Lumineers, although I think it was way too much for her and she was really hurting once we got home. The weekend was pretty rough and I was debating on taking her to urgent care on Sunday, but managed to wait it out till Monday morning when I could start making phone calls. I started out just calling Dr. Gordon's office to follow up on getting her antibiotic refilled and was surprised when he answered the phone himself. At first I thought I called his cell phone, but he said no, he just was in the office and answered the phone. I really shouldn't be surprised, he's been one of the most accessible surgeons I've known since he first started treating Faith when she was 2. Anyway, I was able to talk to him some more about her pain and told him that we were out of the Oxycodone and I was really struggling with how to help her. He said they are unable to prescribe narcotics across state lines and so I would need to see if her pediatrician or someone here would be able to prescribe some more oxy for her. He said based on where she was feeling the pain (mostly around the jaw joint) that he felt like we are stretching her joint muscles and a lot of previous scar tissue and that is likely the cause of the pain. He's been looking at her xrays and hasn't seen anything concerning. So, based on that, I called her pediatrician and spoke with a nurse. She told me he was on vacation and that their office absolutely won't prescribe pain medications so it wouldn't help to bring her in to see another Dr in his absence. What frustrated me was more that they had no suggestions of who to take her to beyond just calling her surgeon which of course I'd already done. One of the things I've liked the best about her regular pediatrician has been that he's been very good at referring us to really great specialists like her Pulmonologist (Dr. Guarin) when she was still a baby.
So, on to the ENT, I called them, and basically got the same response - her regular ENT was out and they didn't think they were the ones to help, even though they are the ones following her airway and trach management. So I said we already had an audiology appointment at 2 pm and I would just take her to urgent care there at Children's when we're done. They agreed and thought that would be the best option and I thought they were asking me a bunch of details to call ahead to the ER to let them know we were coming. At 2 we went to her audiology appointment to get her new BAHAs (Bone Anchored Hearing Aids) which was a struggle for her but we got through that appointment and the audiologist was wonderful. From there we headed downstairs to do her weekly xray, and were told they did not have a standing order for her. This happened the week before, so I explained it again and asked them to double check and they said they did and there wasn't anything in the system. I was started to feel really frustrated at this point and said fine, whatever, we'll just go to the ER and they will order the xray.
So we go to the ER/Urgent Care and after a bit get in (the ENT's office had not called ahead with any of the information they asked me for) and get seen by the ER doc who begins to tell me all the same things - ER docs don't prescribe pain meds unless it's for an acute incident and it really should be her surgeon, which by now was after hours back in Dayton - so I thought we hit another dead-end and I was really just holding back tears at that point. After a little pep talk I managed to pull myself together again and then an xray tech walked in and took us to get the xray (above) and then we went back to the ER and a nurse walked in with our discharge papers and said they had called in a very small prescription of oxy to our local pharmacy and had called the ENT's office to follow up with us in morning. So, in the end, the ER doc was very helpful, I just didn't really know that's what he was doing!
Struggling through the pain in the hospital waiting area
All of that drama yesterday, just to get home last night, give her the regular Motrin doses, feed her, do her pin turns, get her to bed, give the oxy, just to have her still be in extreme pain and wake up this morning with her pain at a 10, was very disappointing. The ENT's office did call me this morning and they said another ENT could see us, but they suggested that maybe the pain clinic would be a better option, which I agreed completely. They transferred me to them and I had to leave a message and now I'm waiting for a call back. In the meantime, Dave referred us to a massage therapist and she is giving Faith her very first massage as I'm typing this. Sami suggested trying some CBD lotion to help with the pain. I've used CBD lotion before when I was recovering from my achilles heal injury and I know it works really well as an anti-inflammatory, so it makes sense to give it a try - really just using it on Faith's neck and back, not on her face.
Many hours later...
Faith seemed to enjoy the massage quite a bit and then I got to have one too - wow, I needed that!!
The pain clinic never called me back today, guess I'll have to call them again in the morning.
Instead though, I got a call from Faith's school, from the homebound education coordinator (probably not her actual title, but basically what she is helping us with), Alyssa. She was super helpful. School starts here in just 2 weeks, on August 9th. Faith had a great Freshman year at Highlands Ranch HS, yet she really doesn't want to go back to school in person this fall and wants to do online education until all of the swelling from her surgery is completely gone. So, we started talking to her IEP/special education case manager in the spring, who got her counselor and a bunch of others including Alyssa to meet with us to come up with a plan for Faith for this fall. I'll save all the details about the options we considered for another post, but she was calling today to touch base, see how Faith was doing and set a date for a meeting next week to discuss the updated plans now that we have an idea of Faith's final surgery date. Faith will probably just take a couple classes for the first quarter and then work her way back to full time and maybe even split some time being at school and doing some online classes for the 2nd quarter. They are being incredibly flexible and supportive to make sure Faith has a positive experience and gets the help she needs. I'm really grateful for all of their support, especially compared to how little support I was getting yesterday!!
Speaking of school - Anthony is getting ready to head off to CSU (Colorado State U) in just a few weeks and he and I are going to his orientation up in Ft. Collins tomorrow! I'm both super excited and happy for him, while kinda dreading it and feeling a little heart-broken about him leaving home. And while I was so thrilled that he got accepted to Virginia Tech (my Alma Mater), I have to admit, I'm happy he decided to stay local and will only be an hour and a half drive away. More about Anthony and CSU another time!
Some Fun Amidst All the Pain
Time to wrap this post up... I thought I'd save some of the fun things we have managed to do between dealing with the hard stuff! The majority of the time since we've been back in Colorado has been spent at home, with Faith just laying around watching YouTube and TikTok videos and a lot of time sleeping. But she has been able to do a few fun things as well...
As soon as we got home, Fred helped me with having the rest of the family over both Saturday and Sunday.- sadly I didn’t take any pictures to share! Faith really enjoyed seeing everyone and they all come by to visit quite a bit, especially her Dad who comes to see her almost daily. It’s tough living between two homes, and she decided to stay here full time while recovering because she has a loft bed at his place and that would be impossible to sleep in right now. While I’m taking Anthony to CSU orientation this week though she will go stay at his house in Anthony’s room, so they can have some good father-daughter time! ❤️
Yep - she drove! Just one time for only about 20 minutes, but at least she tried. She got her learner's permit last October and the law here in Colorado is that you can get your permit at 15 (she was 15 and about a month) and then you must have it for a full calendar year and show a log of a minimum of 50 hours of driving time (we use an app to track it) including 10 hours of night driving. I told both my kiddos I didn't think 50 hours was enough, so I wanted them to get 100 hours. I did end up letting Anthony off the hook with only about 56 or so hours because of his good grades and Covid which really impacted us going anywhere so he didn't have as many opportunities to get out and drive. Faith is up to about 12-15 hours so far, and she hasn't felt like driving except this one time since her surgery, so it may take her a few more months before she is ready to get her license. But - she DOES have her own car already - nothing fancy like a lot of the kids here in Highlands Ranch get, but a great 2005 Toyota Highlander that one of my former co-workers sold to us at a really great price as they were moving to Scotland and had to sell it (thanks Sally!!). I'll save pics of the new car and her driving expeditions for another post as well.
The big highlight was going to her very first concert with her best friend, Tori (also her first!). It was the Lumineers at Coors Field along with Dave and I and it was really fun! She really wanted to go see Billie Eilish, but I wasn't buying tickets at $400+ a pop!! The Lumineers was quite a good time and Faith and Tori looked awesome and really enjoyed being there. We have plans for another concert or two and I hope Faith has just as much fun at those as well.
That's all for now!! Thank you all for reading all my ramblings and for all your amazing support of Faith and for me as well - your kind words and warm wishes keep me going even when I feel like I can't take it anymore! So just ....
THANK
YOU
ALL!!! 💖
