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!!  💖💖💖

Past, Present and Future

FIVE years since I posted last? Time to catch up!!

Wow, shocking that I just quit updating Faith's blog and right in the middle of her last jaw surgery! Embarrassing! Writing has always been therapeutic for me - it helped me so much when Faith was little and I couldn't think about anything else besides what we should do for her.  Medically first and foremost, but socially and academically as well.  I used this blog to think through so many of those decisions, while hopefully providing good updates for family and friends.  I think technology took over to a large degree, it just got easier to upload pics from my phone to group texts or FB and when your child is in the hospital it's hard just to find time to eat or shower, let alone find time to sit down and write.  Writing requires concentration and time - something you just don't get a lot of when you're in the thick of it.

Anyway, I will eventually take some time to catch everyone up on how her 5th jaw distraction went in detail and with pics, but as a quick summary - it went a lot like her others, she was an amazing trooper as usual and even went back to school off and on wearing her RED (Rigid Extraction Device) halo, which is rather barbaric looking.  Since it was in October, she decided to be Frankenstein for Halloween - and I have to say - it was like she was making fun of my biggest fear when she was 2 and we decided to get her hearing aids implanted which meant putting 2 screws into her skull, one on each side right behind the ears.  After the implants were in though, I never thought about it again, it was so important to her hearing and it felt like they were just part of her.  Life is very strange! Anyway,  I will have to find those Halloween pics.

The jaw distraction itself seemed to go well, Dr. Gordon over distracted as he usually does, but for the first time when he took the hardware off, he decided to wire her jaw shut for another 3 weeks to help the new bone solidify.  She was so upset waking up from the hardware removal surgery to discover her jaw was wired shut.  I remember it well because it was a week or so before Thanksgiving and she couldn't eat and she was devastated.  We'll probably never do another surgery right before Thanksgiving again!! 😂

Much to our disappointment just a few months afterwards, her jaw seemed to lose all of the growth and possibly more.  This was the first surgery out of 5 that didn't seem to be worth doing it.  I know so many families that have had plenty of bad surgeries and it just scares the crap out of all of us as parents to know whether any of these surgeries are the right thing to put our kids through or not.  You can never be sure - there are no guarantees and you get different opinions from every surgeon you talk to and in the end you have to make the decision based on your own gut and from all the information you have. 

For Faith, each jaw surgery she has been through helped her on her journey, the first one helped her start vocalizing around her trach and beginning to speak (she couldn't make any sounds most of her first year - meaning she never cried as a baby), her second was her big scapula bone graft at 5 years old when they took the bottom of her shoulder blade to build the part of her missing lower jaw, that one really improved her airway and maybe was when she first began to smell (due to her nasal passage finally being open), the third one was another jaw distraction and around the time she finally began to swallow real food!  I remember my fairly new neighbor taking Faith to the movies with her girls and texting me to say Faith had a slushy and I replied "no she didn't" - she thought I was mad at her for letting her have that, but I was saying she couldn't swallow that much and then discovered she really did!! 

Her 4th jaw surgery was her mid-face advancement, the surgeon cut both her upper and lower jaw and grew new bone resulting in advancing the lower half of her face.  It was one of the harder ones to watch her go through, but it was so successful and that was when she was able to start capping her trach all day and only needed it at night for sleeping.  That was also when we began doing sleep studies to start trying to see if it was enough to get her trach out completely.  It was so close!!!

Which is why she made the decision to have her next (last) jaw distraction in 2016.  Her reason for wanting her trach out has been for a single reason for many many years - she wants to learn to swim and she just can't with a hole in her neck (although she tries and it scares the sh*# out of me all the time)!  So after the last (5th) surgery was done, she had her 2nd sleep study and it just wasn't much if any improvement from the last one.  Faith kept hoping it would get better but we did another sleep study last summer (2020) and it was her worst one yet - something like 70 apneic events per hour (over 30 is bad), and I'll tell you trying to sleep in the same room as your child and listening to them gasping for air is anxiety-inducing and not much of a sleep aid!! About half-way through the night they gave up on it and opened her trach back up and put her on oxygen.  It was kinda devastating how much worse it was than the last one.

So that's the background the led up to last night...

Sleep Study #5 - Last Night

Before Faith's last sleep study, her ENT mentioned to her that if her sleep study wasn't good enough, that CPAP could possibly be an option to get her trach out and start using CPAP.  When I heard it I thought, why would would do that?  She has a really great airway with her trach, and at night all she has to do is take her cap off and put a filter on the trach - about 10 seconds.  I couldn't imagine anyone wanting to be connected to a machine if they don't have to be.  Then she had the study and it was so bad we knew we would have to wait until she had another jaw surgery before doing anything else.  But somewhere in the back of her head was the ENT's comments about CPAP and she never forgot about it.  So at her last appointment with him she brought it up again and told him she wanted to try it out.  And he thought it was a good idea and that it is very likely that she will need CPAP for a transition period after getting her trach out anyway, so it would be good to practice wearing it.

So for the last month or two Faith has been wearing the CPAP headgear (covers her nose) and seeing if she could keep it on all night. And she did! So then they scheduled her sleep study, which was last night.

As prep for doing a sleep study they put about a dozen electrodes all over your head and face and then wrap your head like a mummy - it looks super uncomfortable, but she handled it just fine. Here she is sleeping with both her head wrapped and the CPAP on.

And SHOCKER of all shockers - she slept really well with it on!  I never heard her gasping for air even once.  So now we wait to hear the results and what's next.  She still won't get her trach out until she has at least one more major jaw surgery, which we are waiting until she is done growing (maybe next summer).  

But it's super exciting for her to have a positive sleep study after all these trys.  

And now I'm falling asleep - so it's time to call it a night and I will try to write again soon.

Thanks for reading!

Robin

Jaw Surgery #5 Starts Today!

Hi, it's Robin. I'm writing for Faith as we go through yet another big jaw surgery (5th major jaw surgery, 4th jaw distraction).

As Faith mentioned in an earlier post, she made the decision last spring that she didn't want to wait till next summer for her next big jaw distraction.  In fact, she wanted to have it over the summer, but since we already had plans to go to Cali to celebrate Grandpa's 90'th birthday (Wow!!) and go to Disneyland, we had to wait till fall.  And here it is!

We left Colorado Wednesday evening, flew to Indianapolis getting in just before 1am on Thursday and drove to Cincinnati, arriving a bit after 3am.   We checked into our hotel and slept until 10am! We went to the Newport Levee for lunch and then drove out to see Dr. Gordon at the Liberty satellite campus and talked about the details.  After that, we drove back to the hotel, met up with my cousin Lynda and her husband Rich who happened to be at a conference up in Dayton and went to dinner at the rotating restaurant on top of the Radisson hotel where we are staying.  Then Faith talked me into taking her to the pool for a late evening swim and finally off to bed by 11pm just to get up around 5am today!

During her clinic appointment, Dr. Gordon thought Faith's jaw opening looked really good, so he decided to not do one part of the surgery, a coronoidectomy that he thought he would need to do from looking at her CT scans.  So her surgery this time includes:
1) removing some hardware from the mid-face left behind from her last surgery,
2) doing the lower jaw distraction with placement of the Rigid Extraction Device (RED) and
3) adding some bone paste to her cheekbones to make up for some deficiencies in that area.

Here are Faith's before pics this time around:

Compare these to her before pics from June of 2015: (http://kargoll.blogspot.com/2015/06/before-surgery-pics.html)

One of the biggest differences is the chin advancement he did last time.  It's harder to really see the result of the mid-face advancement, but below are the pictures from her latest CT scan.  Note these are a little icky to look at, but it's the best way to explain how challenging her anatomy/skeletal structure is that we are trying to have fixed.

As shockingly underdeveloped as her left side is, you would be surprised to know just how happy Dr. Gordon was when he saw her scan.  Most of that pencil thin bone is actually from her scapula graft back in 2012 and he says it has grown significantly.  You can see the hardware that he is removing on her cheekbones and on her chin.  

Post-Surgery Update:

Surgery went very quickly this morning.  We arrived just after 6 am and she went into the OR just before 8.  For the first time she decided not to have Versed (an amnesiac that usually helps her relax and get a little silly before going back to be put under) and she really wasn't anxious at all until we finally had to say goodbye outside the OR.  Then she started crying a bit, but  after a couple hugs, she was ready to head back.

The ENT came out around 9am and gave us an update on her airway.  He said it's a grade 2 on a scale from 1 to 4 and that we want her to be at a grade 1.  Then Dr. Gordon came out at 11am and said everything went really well.  He mentioned that a number of her baby teeth came out but we were kind of hoping for that for at a least a couple of them!

Here's a pic of her just out of surgery.  After the last round, we thought she looked GREAT, so much better (and less bloody) than the last time.  There's actually a chance she could be discharged as early as tomorrow which would make Faith super happy because she would get to spend 2 nights at the Ronald McDonald House! Also if she get's out tomorrow or even on Sunday there is a possibility we could fly home on Monday instead of on Wednesday!

Well, that's enough for today, I will try to post another update tomorrow.  Time for us all to get some rest!  Thanks for reading and please leave a comment for Faith.