Unwired, eating again and now playing the waiting game!

First and foremost, Faith is doing really well!! Her jaw was unwired on September 1st and she has been recovering quickly - she started eating again with an icee drink in the hospital and a McD's soft serve cone on the way home.  Since then she's continued to try lots of other foods including lots of ice cream, ramen noodles, tacos(!), popcorn and last night she actually went to visit her old co-workers at Parry's Pizza and brought home some cheesy bread (pizza) and some dessert doughy bread.  Eating is still difficult, she doesn't have good alignment between her upper and lower jaw, so she is struggling with chewing and she is using gravity to help move the food to the back of her mouth quite a bit (so she likes to eat lying down!).  Overall though, I think she is progressing well.

About a week - 10 days post op - finally pain free (most of the time!)

Right after getting her wires removed - Soft Serve Ice Cream

10 days post-op - at the movies eating popcorn and gummies!

Now it becomes a wait and see game - we just need to see how her jaw heals over the next couple months, does she keep all or even just enough of the new jaw bone she needs in order to improve the airway enough to get her trach out or not.  Only time will tell us and both Faith and I have noticed that her jaw has receded a bit already, which is well, scary.  Please, please, please, let her keep enough for this surgery to have been a complete success.  The change to her upper jaw is already so significant to have made the surgery worth having, yet, the ultimate goal has remained the same with every jaw surgery she's been through and we are ready to cross the goal line!! 

There will be another surgery later this year, mostly just for touch-ups to her jaw and nose, so I'll post again soon.

Best,

Robin and Faith 

More Time Needed

Well, it's not a home-run yet, but the surgery to remove her headgear was at least a step in the right direction and things are looking good at a glance.  When Dr. Gordon removed Faith's headgear her left jaw bone (which is her less developed side) shifted too much so Dr. Gordon decided to go ahead and leave the headgear off but wire her jaw shut.  It wasn't the outcome Faith was hoping for, but he had discussed it with her before she went under.  She was dreading this outcome to be honest - after 8 weeks of having her mouth pulled in a closed position and growing new jaw bone and not being able to eat, she was so looking forward to having it off and getting to eat again - in fact she created a long list of the foods she couldn't wait to eat again.  But wait she must - only 2 more weeks (easy for me to say "only"!).  She definitely understands the need for doing it and she is so scared that even with 2 more weeks she might lose the new bone she gained with this surgery, because that is what happened last time.  

Dr. Gordon had wanted to do a few other things when he took the headgear off, but because of the bone not holding where he wanted it to, he decided not to do anything else at this time.  So, in two weeks she can have the wires cut-off.  We are hoping someone in Denver will do it, but if not we will have to come back to Dayton for Dr. Gordon to do it.  Then he wants to let it sit and heal for another 3 months.  Assuming that all goes well he wants to do a final surgery to add more bone paste to her cheekbones and to her lower jaw bone, to square it off a bit.  He also wants to touch up her nose to narrow the base of it a bit and shorten the tip of it.  She was very agreeable to him narrowing her nasal flares - basically fixing whatever he did last time that widened it too much.

So now we have a couple extra days in Dayton and will go visit some friends tomorrow before we fly home Monday night.  

Not much else to share right now!  Thanks for reading and I'll give another update soon.

Heading back to Dayton!

On the plane and ready to go!! We get into Cincinnati at 2:30 ish and will drive to Dayton and are staying at the Ronald McDonald House again.  Faith's surgery starts at 11:45 eastern (9:45 MT) and will probably take a few hours. 

I will try to keep you all updated.

The plan is to remove her headgear, do some final touch up work on her jaw, cheekbones and nose.  Fingers crossed this is the last major jaw surgery Faith needs.  It may take several months before we know the full results for her airway and whether her trach can come out, but that is the goal!!

It addition to her jaw stuff, an ENT is going to be putting in a new BAHA post for Faith, her existing one became unstable this summer after another ENT added a post extension, not really sure why that happened but it did and so it’s better to get it replaced now while she’s under for this one.

We also have another very minor outpatient surgery scheduled for mid-September to remove an eye dermoid (like a cyst, but it’s actually just a skin growth on her eye).  

I’m super excited to see the results of this surgery and the one in September too.

Faith is currently on Homebound education, taking just 2 classes the first quarter, English and Biology. She can take as slow as she likes and then she can start going back to school part-time when she’s ready.

Speaking of school, we dropped Anthony off at CSU - Colorado State University on Monday. It was so bittersweet! Exciting to see him starting this new adventure in his life and sad of course to come home to his empty bedroom.  It’ll be tough not seeing him every day, but we’ll be keeping in close touch through text and FaceTime!

 

Will update more tomorrow!

Love you all!! ❤️🥰❤️

Post-Op Week 5: Progress and Pain

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!!! 💖

We’re Out and Made it to Virginia!!

Post Op - Day 4: Feedings and Travel Day

Sorry it's taken me so long to get back to posting updates - it's been a long but good week.  The last update I gave was that Faith's feedings were not going well and that she was throwing up so we had to keep decreasing the quantity until it was down to only 15mls (1/2 oz) per hour.  That was Thursday, 6/23, and we had been hoping to leave the hospital on Friday but there was no way without her tolerating her feedings.  Thankfully, things turned around Friday night.

Faith did a great job getting through the night on Friday (6/24) with increased feedings and by Saturday early am she was up to her goal of 63mls per hour - which would take feeding her 24hrs a day to get her to her total goal of four 375ml feedings.  Since she reached the goal, the lead resident told me early Saturday morning that we could be discharged by noon.  Dottie, Faith’s nurse on Saturday thought it was pretty humorous that I thought we would be out of the hospital before noon - and I have to agree, you’d think I was a newbie believing it was possible! She teased me, asking me if I'd never met Murphy before!! This is a theme in my life of people calling me out for my overly optimistic outlook on life and thinking I can get a million things done (or 50 lbs of potatoes in a 10 lb bag as Fred would always say), which typically results in me pushing myself and the people around me pretty hard.  Anyway, the main obstacle in getting discharged was that we needed to get a feeding pump delivered to use at home. Getting medical supplies delivered is a notoriously frustrating experience for almost every family I’ve ever talked to about it.  It always take so many calls and it’s never simple or easy.  The Dayton Children’s home supply couldn’t provide it because we were leaving the state and our regular supply company in Denver couldn’t send it to our house because we were heading to VA for a couple weeks before flying back to Colorado. But the Pediatric ICU Resident doc was on it, and he made all the calls to our home company and was getting it delivered. We had the choice of waiting around for it to be delivered to the hospital (which meant no way we’d be discharged before noon) or having it delivered directly to my parents in VA. We really wanted to get on the road for the ~10 hour drive, so made the decision to have it delivered to them and just feed her manually during the drive, by pouring her food into a 60ml syringe connected to her feeding tube and pushing 5mls every 5 mins through it.

We actually did manage to get out of the hospital around 1:30 and on the road to my parents by 2pm and made great time with Fred driving the whole way, Anthony navigating and me sitting in the back seat with Faith feeding her and suctioning her and dozing the whole way.  I literally set my phone timer for 5 mins and would fill the syringe, push 5mls of food through it, reset the timer, doze and repeat, each hour I would refill the syringe with another 60 mls.  We got to my parents around 10pm and all the sudden Faith was so excited to be there and wanted to show her dad (Fred) where he was sleeping at my sister's house (who lives right next door to them) and she was being her normal spunky self full of energy - it was literally the most active she'd been since she'd gone into surgery on Tuesday.  It made me feel so good about bringing her here to my parents.  This is a second home for my kids and I'm always happy to see them enjoying their time here.

The bad news upon arriving to my parent's house was that the pump had not been delivered, so I was going to have to continue manually feeding her at that very slow rate.  Faith and I shared the king size bed in my parent's guest bedroom in the basement, and after I got her to bed I tried for about 2 hours to feed her through the night the way I had been in the car, but I was too exhausted to do it the whole night.  So day by day over the next 3-4 days I started increasing her feedings so that I could sleep at night and take breaks during the day.  I have to say I was mostly failing at getting her all of the food she needed - instead of 6 of the 250ml boxes of formula (think of Boost) I was only getting about 4 of them in.  It took until Wednesday after probably a half dozen calls and waiting on hold for a couple hours and being hung up a couple of times, and giving them my sob story about not being able to properly feed my kid, to finally receive a feeding pump - by which point I had already gotten Faith up to taking a box and a half (the full 375mls they were originally trying to get her to in the hospital) in about an hour long feeding.  I was very close to telling them just to forget it completely!  I'm really glad though that it was finally delivered, because I immediately set it up, poured 2 boxes (500mls) of food in it and when she went to bed I connected it, pushed her meds through a port on the tube, turned the pump on and I got my first full night of sleep with no interruptions!  And since then I've been able to give her 2 boxes every morning and every night while she is still in bed leaving us just 2 feedings to do in the middle of the day with just one box each - it's been a huge help!

So the hardest part of this surgery for Faith is the fact that she cannot speak or eat for six weeks - because her mouth is basically clamped shut.  And the head gear is very uncomfortable to sleep with, although Faith somehow manages to lay right on it - kinda blows me away!!  If you know Faith though - she LOVES to eat!  This is really uncommon for kids who have g-tubes, especially when that is the only way they are getting food.  I will forever be grateful to Kim Fekete - Faith's in home speech pathologist who began working with Faith when she was just a few months old until she started pre-school around 3yrs old.  She came to our house once a week and she was the one who taught Fred and I about oral aversions for kids who aren't used to eating orally from birth and that it was super important for us to be stimulating Faith's gums with gum massages and biting toys and by brushing her gums/teeth frequently.  Faith passed her first swallow study when she was about a year old and we began letting her taste foods when she wanted to, mostly she would taste stuff and let it fall out of her mouth into a pocket bib.  It wasn't the prettiest sight, but it was great that she could sit at the table with us when we were eating and participate as well.  When she was around 7 years old my neighbor invited Faith to go to movies with her daughters, and she texted me after the movie ended telling me that Faith drank half of an Icee drink.  I replied "no she didn't" rather matter of factly, but the mom thought I was upset with her for giving it to her and she apologized and said I'm so sorry, but then I clarified, "no, I'm not upset, it's just that she can't swallow any real quantity of anything" and then she sent me a pic of the empty cup and said, but she did!  I couldn't believe it and from that point on she was off to the races!!  The girl wants smoothies, milkshakes, McFlurrys, Starbucks, ice-cream, french fries, cookies, chips, etc, every day and so the challenge of not being able to have it for 6 weeks was very depressing for her, yet in the back of my head I also know it will be motivating.  You see, she is ALLOWED to have food, it's just that she can't get a straw in her mouth or a cup to her lips, etc. but I had a feeling she would find a way and within a few days she didn't fail me!  At some point she figured out how to stick the feeding tube between her upper and lower teeth and starting making herself smoothies and will lay on the couch, and let the smoothies run through the tube into her mouth - YAYYYYY!!!  I knew she would figure it out and I'm so glad she can have at least something sweet to taste.

Family, Baseball, Zoo and Pool time

All in all, things have been going smoothly.  It's tiring and round the clock for sure, but each day gets easier, with less care.  Faith let me wash her hair a few days ago and I've even seen and heard her laugh a few times.  Fred had to fly home on Monday morning to get back to work in Colorado.  I've been so glad to be able to have my family here and helping us out. Two of my sisters created a spreadsheet for me to track the 8 or so meds I have to give Faith from 6am to 12pm some 2, 3, and 4 times a day - it's impossible to do it without tracking on paper and it helped so much to have that printed out for me.  My mom is the constant cook, always in the kitchen until some of us finally had to boot her out and take over!! I made one dinner - grilling some chicken to have with a spinach, strawberry, blueberry salad, but most of the time I am too busy to help with cooking - so I'm super happy to have them.

For the most part we've just been staying at the house most of the day, but we've gotten out for a couple of activities.  Anthony really wanted to surprise Faith with tickets to a special baseball game at Nationals Park for Deaf Awareness.  Faith was pretty into it and we were able to get her a wheelchair to take her from the entrance to our seats.  She didn't make it through the whole game, but the three of us enjoyed being there together.  Anthony's girlfriend, Taya, arrived in the wee hours on Tuesday morning so the two of them have been spending all of their days touring DC.  I'm so glad Anthony is so interested in all the government buildings, memorials and the museums available here.  We even managed to join them yesterday (Friday) to go to the National Zoo - where we rented another wheelchair for Faith.  The wheelchair is mostly just to keep people from bumping into her, but I think it helps with her not getting too tired as well.  Faith has even gotten in the pool twice and I enjoyed a lazy afternoon just floating around for 2 whole hours and getting some Vitamin

2019

World

Champions

Jaw Distraction Progress So Far

As for the progress of the jaw distraction itself, it is going well.  Tuesday will be 2 weeks since surgery.  Her face is still a little swollen, but the change to her upper jaw is really impressive and her front teeth in her lower jaw are approaching her upper front teeth from the daily pin turning we are doing (basically pulling her lower jaw forward 1mm twice a day) we will continue turning the pins (distracting) for about 4 weeks total, which means her lower jaw will be far past her upper jaw, but again, that's just temporary until he molds the new bone into the position he wants in order to align it as best as possible.  He also told me that he took some bone from her upper palate so that if her orthodontist wants to try to put an expander in again it should work to widen her upper palate and jaw.

I need to call Dr. Gordon on Monday, but my assumption is that we will just go to Denver Children's soon to get xrays to send to him so he can see the progress.  Typically we do that a few times while we are turning the pins so that he can decide when we should stop or if he needs to make any other changes.  There is a chance he will want us back in Dayton mid-way to check things in person, but in the past we've been able to do it from Denver so I'm hoping we can still do that.  I've been extremely fortunate to be able to go on FMLA from work, but I'm hoping I can go back to working from home sometime next week after we get back in town.

Need to wrap this up so I can finally get it posted - I'm sorry it's taken a full week to write this update - hoping to keep up with it a bit better over the coming weeks!

Thanks for reading! 💜

Post-Op Day 3 - Feeding Struggles

So. We’ve hit a bump in the road (echoing in my head are Dr. Gordon’s caution that I might be being overly optimistic about her being ready to leave town by today and my bosses gentle teasing, “You?? Overly optimistic, nooo!!” Haha, yeah they all know me too well!)

Basically, they started Faith’s g-tube feedings yesterday and were trying to start with just 125 mls (about 4 oz) in the morning, 250 at her next feeding and 375 at her 3rd and 4th feedings and that would have been her regular schedule going forward (375 4X a day).  The first two went well, but just into the 3rd feeding Faith started gagging, turning red in the face and suddenly threw-up a small amount. At first I didn’t know what it was, because Faith has never thrown up. When she got her first g-tube as a baby she also had a procedure done, called a Nissen Fundoplication, where they wrap the top of the stomach around itself, which simply speaking narrows the opening into the stomach enough that is makes it more like a one way valve. I remember them telling me she had severe gastro reflux and that it is also pretty common to do when kids get g-tubes.  As kiddos grow though, they tend to loosen up and not continue to be as effective.  So, my guess is hers has loosened up and for whatever reason the feedings are upsetting her stomach.  

The challenge is that this was one of the key criteria for her to be discharged- we can’t take her home (or even to the Ronald McDonald House let alone down to Virginia to my parents house) until we can adequately feed her. So, right now our plans are up in the air and we are taking it day by day to figure this out.

The highlight of her days is definitely spending time with Millie, the hospital’s dog - she is so sweet and smart, we’ve all been enjoying her!

Hoping for more progress later today.  Stay tuned!

Surgery details and Days 1 and 2 of Recovery

Surgery details

Faith was in good spirits going into surgery on Tuesday - she got some Versed right before they took her back, which helped her relax quite a bit and she recorded a cute video of her talking and telling everyone how much she loves you all and appreciates the support.  She wanted to do that because she won't be able to speak for the next 6 weeks or so.

Outside of the Ronald McDonald House

 the morning of surgery

After taking some Versed

She came out of surgery around 6pm - and looked really good (swelling typically kicks in around 24-48 hours later, so we can actually see some of the results right away before she swells up).  Dr. Gordon decided to do the LeFort 1 - he cut her upper mandible between the nose and teeth and shortened it a bit and then plated it in place.  He also did a little bit of rhinoplasty turning her nose up a tiny bit which apparently is the ideal nose! He said she may need some further work on her nose in a future surgery, but it should look better just from what he did this time.

He also did the lower jaw distraction, cutting her jaw in the two places I showed on the drawing in yesterday's post.  And he attached the RED (Rigid Extraction Device) to her head and it is attached to her lower jaw for us to turn the pins 2X a day for next 4 weeks - that will grow her lower jaw 2mm a day X 28 days is almost 6cm - it's an awful lot and it will look really overboard until he removes the hardware and then the bone retracts back a bit (he describes it as imagine stretching a piece of gum and then letting go).  By over-distracting, it gives him some extra bone to help add when it retracts.

Faith had a pretty uneventful first night, she woke up in pain of course, but once they got her pain meds adjusted she was able to sleep.  I'll never understand how she sleeps on her side with the RED device on her head - it looks incredibly uncomfortable.  The halo is held in place with 5 bolts on each side - they have flat ends and basically are pressing against her scalp, they don't go into the skin.

I did get up and suction her trach out about every hour throughout the night, she has a lot of bloody drainage and is coughing a lot of it up.  It's always an interesting balance with the nurses about whether they want me helping or not, but most of them welcome mom or dad doing what they are comfortable doing to keep their kiddos happy.

Post Op - Day 1

Faith had a very good day.  Her day nurse, Chelsea, was great, although Faith got pretty upset with her at one point because she took out Faith's foley catheter and one of her 3 IVs - Faith's most hated event of every surgery.  Faith even has a tape "allergy" in her charts because she gets so upset about having tape removed.  Chelsea told her she would be quick, but I think that upset Faith more, so she said she would go slow, but then she didn't.  Later in the day Faith wrote a sentence on her notepad to Chelsea saying "it hurt because you didn't use any wipes first and just ripped the tape off!" It was kind of funny that Faith didn't hold back any punches, just told her what she thought.  Faith was pretty annoyed with both Chelsea and me by the time we were done cleaning her up and doing all that - she just wanted us both to stop and leave her alone!

She managed to get out of bed many times to go to the bathroom and to go into the hallway to play fetch with Millie, one of two therapy dogs that are "employees" of the hospital and come to work everyday to help motivate and sooth kids as they are recovering.  After their playtime, Millie got to jump on Faith's bed and just lay with her for a little bit - Faith was very happy about her time with Millie.

Dr. Gordon came to visit Faith late in the afternoon on Day 1 and had me do her first pin turning.  Faith said no at first, but then she let me do it - he told her she probably wouldn't feel it and it seemed like she didn't.  We will be turning her pins 1mm 2X a day - which isn't too bad and it is pulling the cut bones apart so new bone can grow in the gap, so it really shouldn't be too bad.  We will be distracting for about 4 weeks.  To start with, we will be distracting both sides the same amount, but at some point Dr. Gordon indicated we might start trying to drive her shorter side further to the other side by distracting it more - I'm just guessing that means we might continue to turn that pin 2X a day and only turn the other one 1X a day.

Faith spent a little time on her phone yesterday and got some fun things from the child life team (fidget spinners and pop-it's), spent the afternoon with Fred (while I went back to the Ronald McDonald house to shower, nap and just have some downtime) and she especially enjoyed having Anthony hanging out with her and being able to sign with him to communicate.  The three of us hung out watching the Colorado Avalanche play game 4 of the Stanley cup finals.  Faith fell asleep before the game ended, but Anthony and I were excited to see them win game 3 out of 4 against Tampa Bay Lightning - tomorrow night is game 5 and we are excited to watch it!  Fred is bumming a little bit, because he could actually be working the game tomorrow night and be able to watch it in person, but he's here (which is where he wants to be). 

Post Op Day 2

Faith had another good night last night - slept much more with less interruptions than the first night.  Her trach secretions have mostly cleared up and are not too bloody now.  She also let the nurses do a little mouth cleaning yesterday and wanted to suction her mouth out herself late last night. 

The plan for today is to get her transitioned from all her IV meds to everything going through her G-tube, get her up and walking around some more and get all the medical supplies we need to care for her at home.  She got her first g-tube feeding this morning and it went well.  They will be increasing the quantity with each feeding and if she tolerates those well we should be on track for discharge tomorrow.

Our hope is to drive to my parent's house in Virginia tomorrow, about an 8 hour drive not including stops - but I'm concerned we won't be able to get started till late in the day and so trying to see if it would make more sense to stay one more night at the Ronald McDonald house or to plan to drive about half of it tomorrow night, stay at a hotel and then drive the rest of it Saturday.  It's a lot of driving and I'm not sure how Faith will be feeling with it all.

This is the first surgery we've travelled for since Fred and I split up in 2018.  We are very fortunate to have figured out how to co-parent together and continue spending time together as a family.  This trip has gone very smoothly so far. We are sharing a room at the Ronald McDonald House - luckily with 2 Queen beds and a separate living room space. I've been staying at the hospital over night and he comes to relieve me in the mornings - this is really the same routine we've always done, but I see him being so much more comfortable with it now than in years past.  I'm so happy to be able to work together so well to give Faith the support she needs!! 😊💜

Well that's about it for now - I'll aim to provide another update in the next day or two!  Thank you so much for all the wonderful support, we are truly grateful.

Here We Go Again!! Jaw Surgery #6 (6th and Final??? Fingers Crossed!!)

Hi Everyone!  Thanks so much for coming back to read Faith's blog and follow along as Faith goes through her sixth major jaw surgery and with any luck/skill/prayers, this is the big one to get her trach out after almost 16 long years!  Yes, we are both excited for that possibility as well as terrified and dreading going through it all again.  On Monday (6/20) we had her pre-surgery appointment with Dr. Gordon the same surgeon who did her very first jaw surgery when she was two - thought it would be fun to share the then and now pics...

2009 - After Faith's first jaw surgery

2022 - Before Faith's 5th jaw surgery

So in our pre-surgery meeting with Dr. Gordon he talked about how her CT scans look and showed us the 3D acrylic model they made from the scans - it really makes it easier to understand and talk about where he wants to cut the bones and try to grow more bone.  Here are a few pics - her bone structure is EXTREMELY underdeveloped in her face, so don't be too shocked by these...

Surgery goals / options:

Lower jaw: This part of the surgery is pretty straight forward, same as we've been through before with just the change of the location where he cuts her bone to try to be in a new spot that will grow better than doing in in the same spot as a previous distraction...

 

Right Side: better side, lower mandible has good width/thickness, plan is to cut in front of her first molar (I think) and distract a “country mile” in order to push her lower jaw more toward the left side and align the midline with her face better

Left Side: worse side - where she was missing bone at birth and had a scapula (shoulder blade) graft when she was 5.  Dr. Gordon is very happy to see how long this bone is now - more than double the little piece of bone (maybe 3cm) he originally put in, plan is to cut in front of her first molar and distract to add thickness in order to possibly support future dental implants.

Upper mandible: This is where it get's complicated and Dr. Gordon said he would wait to decide what to do once he got inside and could see things more directly that what he sees in her CT scan.  He explained a couple of options with us, a LeFort 1 which would shorten the length of her front upper jaw - basically removing some of the bone between her nose and her teeth.  The second option is a LeFort 2 or 3 (I have to look it up again) to cut her cheekbones vertically to bring her cheekbones forward, leaving her nose in place.  Since he wasn't sure what he would do before going in, and it's taken me all day to write this, I think I'll just wait to see what he did before trying to explain any more of it.

Feedings: This was another big unknown since Faith no longer has a G-tube.  She quit using her G-tube about 3 years ago and about a year later, after it accidentally came out during some swimming pool rough-housing (!!) we decided not to put it back in and had it surgically closed in Dec. of 2020.  

Because this jaw surgery requires a "Rigid Extraction Device (RED)" - basically a halo that is braced against her skull and has a bar hanging in front of her face to pull her jaw forward, it pretty much clamps her jaw in a closed position where it becomes almost impossible to get any food into her mouth.  I thought we would still be able to do some kind of squeeze bottle feedings, but it came down to a choice between a NG (nasal-gastro) tube or putting a new g-tube in.  After discussing it a bit, Faith chose to have a G-tube put back in - she hated the idea of an NG tube and Dr. Gordon agreed it might cause just more stuff to deal with around her face making her uncomfortable or causing irritation - so he also like the idea of putting a G-tube back in.  I personally hate the idea - maybe because it brings back memories of the YEARS I spent getting up every single night around 3am to prepare and hook-up her feedings and how tiring it all was, or maybe because I remember how much pain she was in after they closed it in 2020.  Regardless, that is the plan and I have to remember it is just temporary - it should come out a month or so after her surgery - so, sometime this fall.

I'm going to stop here.  It's actually after 5 on Tuesday now - and surgery is nearly done.  I will try to post again tonight with details on how it all went.  So far the updates are all good.

Thank you for the many many well wishes and comments on my Facebook page and text messages - the support is amazing!!  💖💖💖