First Jaw Distraction Complete!!

Faith's first jaw distraction is finally over!  Sorry it took me so long to post since her surgery on April 16th, but you all know how busy life is.  Faith and I flew to Indianapolis on April 15th, drove to Cincinnati and got settled into our hotel.  The next morning we went to the hospital and her surgery happened as planned, about an hour or so to take out the hardware and check her airway (bronchoscopy) and then she was in recovery for about an hour and then we went back to the hotel.  Faith did great and was very happy as soon as we got back to the hotel and tucked her in bed with her doll, a bottle of water and cartoons!  The next day we went to see Dr. Gordon and his assistant Renee in his office and then drove to Indiana to visit my cousins and aunts (April, Lori, Linda and Peggy plus April's son Wesley who Faith had a great time playing with) and then flew home on Saturday despite the foot or two of snow Denver got on Friday!  

The results of her first distraction are good, but not a hit "out of the park" as Dr. Gordon had hoped, but even so, she gained about an inch of bone where she had none of the left side and her lower teeth are about 1-2 centimeters further forward than before the surgery which Dr. Gordon was pleased with and thinks he will be able to do his traditional distraction in 2-3 years, before she starts school.  We've always known she would need more distractions in the future we just don't know how many.  My guess is she will at least need 3 or 4 including this one behind us.  The last surgery is done when they are full grown (maybe around age 16-18) but more could be needed in between if her airway becomes compromised after she is decannulated (when her trach tube is removed).   The biggest success from this surgery is that we didn't have to do a bone graft (as of yet anyway) and there were no external scars!

You can really see a little chin now where there was almost nothing before.  The most exciting thing is to see Faith playing with her tongue and touching her front teeth, she loves it!  Below is a slideshow I put together tonight, combining three events, Easter, Faith's final surgery and Fred's birthday, which was last Monday.  We just had dinner and cake with the kids and I gave Fred a day off from his usual chores so he could just sit around and enjoy watching some games and hanging out with his FIVE kids!! :)  Fred is such an awesome dad and he does so much to run this house every single day.  He really deserved a day off and I enjoyed taking care of everything for a change!  

Enjoy and I will post some final before and after pictures soon.  

Best to everyone and as always thanks so much for reading the blog and your comments, we love getting them.

Robin and family

WE ARE HOME!!!

We got home on Monday night and it's so nice to be home again. Faith has to go back for the final surgery still (which will be on April 16th but it will be a quick 3 day trip). Weighing everything, I would say that this surgery was a success, although things did not go completely smooth and I'm still not sure what will happen with her lower front teeth. What I finally learned, well into the distraction was that it was basically a three point distraction instead of four points -- hopefully this won't be too confusing, but I'll try to explain what I'm saying. This might be graphic for some, so I'll do it at the end of this post and put it in red text; if you don't want to read it, skip the red text!! One of the reasons we were pleased with this surgery was simply Dr. Gordon's commitment and availability to his patients. I had heard repeatedly how easy he was to reach from other parents, but after experiencing it first hand, I have to say it was THE difference between being okay with the difficulties that occurred during the distraction and feeling like we had made a bad decision. I texted him a couple of times on weeknights and weekends, called his cell phone a few times and every time I got immediate responses, including once in the middle of a faculty dinner and twice he ended up seeing us in his office on the weekend. I have never before called a doctor at home or text messaged them and I hated bothering him, but the issues Faith was having usually put her into another surgery to make another adjustment so they were almost all justified (maybe not the last one when I was just getting nervous about going home with things looking questionable in her mouth, but after looking at her, he eased my concerns).

So, how do we measure success for this surgery? The biggest measure of success would be that Faith would no longer need to be trached, however, it's not a simple measure. While her airway has drastically improved and she could probably breathe without the trach now, it is very likely that her airway would quickly become a problem again as she grows because her lower jaw will never grow at the same rate as her upper jaw and therefore in just a couple years she could easily need an urgent jaw distraction or face being re-trached. Having a trach during surgeries is actually a luxury. It is so much easier to apply anesthesia to a trach compared to intubating a patient (especially one with a difficult airway to start with). Our last conversation with Dr. Gordon was about the next steps and we agreed that we would rather keep her trach in and wait a few more years before doing another distraction that perhaps can be his typical "shiskabob" distraction which he greatly prefers because they are much easier to control than this one was. I feel a lot more confident that her trach will come out after the next surgery, but if I have learned anything in the last 2.5 years of her life, it's that I don't know what is down the road for her and I could easily learn something new that may change our plans completely once again!

So for us, the more immediate measures of success are Faith learning to eat orally and learning to speak more clearly, particularly being able to start pronouncing more consonants. Faith has always been interested in food, and is already showing interest again. I've been meaning to share these two videos for a long time. These are from the first day of our trip, the day before Faith's surgery. The first one is her talking about why we came to Cincinnati and the next two are her trying to eat (just tasting really) cereal and a banana. I have to say I LOVE this first video!

"The Dr. is going to fix my chin!"

Faith and Anthony eating breakfast

Faith eating some more!

Another example of success is this picture, it's Faith taking a nap in her playpen, but more significant is the pulse oximeter under the playpen showing her oxygen level at 100%!!!! It has never been that high without her being on supplemental oxygen in her life!! I actually don't fully understand this because she should have a great airway with her trach but regardless this was an exciting milestone to see. Now, since we have been home in Denver we haven't seen this yet - I think because we've been gone long enough that our bodies need to go through the altitude conditioning again (I have been having daily headaches since we got home too, which is pretty common sign of altitude sickness). So I'm curious to see if in another week we start seeing the 100% here too.

I was hoping to post new pictures of Faith's jaw as it is now at the end of the pin turning, but I really don't have a nice picture to post right now because her bottom lip is pushed so far forward right now it is curled under and it's not very pretty or easy to see the results yet. So I am going to wait until after we finish the final surgery and all the hardware is out and her lip has healed up. There is one small picture below that gives you and an idea of what I'm talking about, but fair warning, it's not pretty. If a parent of a child needing jaw distraction wants to see some of the more graphic pictures to help you in your decision process, just email me and I will send them to you privately.

All for now, will try to post again soon!

MEDICAL DETAILS, SLIGHTLY GRAPHIC:

Dr. Gordon's typical jaw distraction for kiddos with small jaws is done by using 2 long pins that go horizontally all way through the jaw from the left side to the right side, one near the back of the jaw or around the jaw joint (TMJ) and the other near the front of the jaw (these stick out externally, going through the cheek too). Anyway, once the pins are in, the jaw is cut (broken) on both sides and a bar connects the front and back pins on each side (basically creating a square on the lower jaw) -- the bars are the turning pins/screws/rods that expand as the doctor or parent turns them each day. New bone grows in the gap where the bone was cut and that gap (which actually has new very soft bone growing in it) is expanded anywhere from 1-3mm at a time 1-2 times a day. Each time the gap is widened new bone fills it in and starts to harden. Dr. Gordon has done hundreds of these distractions and is very successful with them and can grow enough new bone to usually result in getting rid of a tracheotomy. He is especially good at distracting newborns to avoid a trach ever being needed to start with. In Faith's case however, this type of distraction was not an option because she has no bone on the left back of her lower jaw (imagine her lower jaw wraps about 3/4 of the way around her mouth and doesn't connect in the back on the left, it's just sort of free floating there with muscles holding it in place). Faith's rods were basically anchored in three places, and no pins went all the way through her jaw from left to right, creating only a V, not a triangle or square.

On her good right side, the bar/rod was attached further back, near the back of her jaw bone and on the left side it was attached closer to the front where her bone ended with the cut on that side roughly in front of her first molar. Then the part that I didn't understand until we had to do all the hardware adjustments, the third point was attached in front basically trying to pull the entire jaw forward from just that one point (with two screws, then wire, then 2 screws at an angle and then wire again with a plate in behind). I don't know how often a jaw distraction has been done like this, but definitely it has not been perfected yet and Dr. Gordon felt that he needs the company that makes the devices to build something a little different if he is going to do it again because it wasn't strong enough for her situation. The end result was that her lower front teeth were pulled way out of place and look pretty bad right now and her lower lip got pretty eaten up and may need some stitches to close up some wounds from all the hardware. There's still a chance Dr. Gordon can try to manipulate her teeth back into better alignment during the final surgery and then place a retainer wire on them with acrylic or something. We shall see!

Check out the picture of her x-ray that Anthony took with my iPhone! He was allowed to stand behind the glass window where the computer is that they look at the x-rays while they are taking them while Fred and I stood near Faith with the heavy lead aprons on (because he can't read yet they said). Anthony is too smart for his own good and ended up taking a bunch of unfocused pics and this really great picture while he was back there (so much for him not being able to read and how that would protect patient privacy!!). Anyway, you can see the screws at the back of each side going horizontally from the bar into her bone (two on her right and three on her left) plus the wires and metal plates around the front of her jaw. By the way -- in case anyone is really good at reading x-rays, Faith's metal zipper tab from her dress is showing near the back of her throat because of the angle this was taken on. We had to unzip it and retake it!

Just another crazy small world coincidence

So you all know Faith has been having her jaw distraction with Dr. Gordon for the last 4-5 weeks and things are continuing along pretty well, but I wanted to share with you the craziest coincidence I just learned about Dr. Gordon last weekend. Faith was having some issues with her distractors starting to make her lower lip/gum bleed and so he asked me to bring her in on a Sunday and my parents came with me. He asked them where they were from and when they said Alexandria, VA he said he grew up there. So I asked what HS he went to and wouldn't you just know it, we went to the SAME HIGH SCHOOL!!!! He graduated just 4 years ahead of me and his sister was in my class. I didn't know her well, but I certainly recognized her once I looked her up!

I'm actually glad I didn't know he went to my HS before we chose him, because that would have swayed me in picking him and I'm glad we picked him more based on our opinion of his medical advice and easy personality than that. But now that we did pick him, knowing that he went to my HS made me feel very happy that he is our surgeon! His parents still live just a few miles from mine!

As always this world just gets smaller and smaller!!

Regards,

Robin

Grandma & Grandpa's visit and a new chin!!

Grandma & Grandpa's visit:

Grandma and Grandpa Kargoll arrived on Wed, March 4th, and we had a very full week together.  They got in late that afternoon and we went out to dinner, the next day we went to Walmart and then on Friday we spent most of the day at the hospital for Faith's 3rd surgery, another hardware adjustment that reset her pins so we could turn for up to another 25mm.  On Saturday, we found the park below around a lake and it was great to get outside for a bit and Faith enjoyed going to the playground and the ducks on the lake.  

On Monday we spent most the day at the hospital for 2 different appointments, one where I got to change her feeding tube button from a 1.2 Minni to a 1.5 Mickey which thankfully finally got rid of the constant pain Faith was having.  And on Tuesday we took Grandma and Grandpa to the airport and said our goodbyes.  I was so lucky to have my in-laws come out and help us out so much.  Rosemary made so many yummy meals for us with lots of left-overs and homemade soups for me for after they left (which I have been enjoying very much thanks!).  Faith got very close to G'ma and G'pa while they we with us and has been asking about them every morning wondering if they are just in the other room still.  Here's a cute picture of them in her cute new pajamas, a gift from their friend Helen:

Faith, Grandpa & Grandma hamming it up:

Jaw Distraction Progress Pictures:  

Here are some pictures of the amazing progress we are seeing so far with Faith's jaw distraction.  It is just amazing to see the new little chin she is beginning to have.

2/17 - day before big JD with Dr. Gordon

2/17 - Right Side

Day 16 - check out that new chin!

2/17 - Left Side

Faith's worse side, missing ramus bone

Day 16

Dr. Gordon promised me copies of her xrays when we are done too, and those are even more amazing than her new little chin.  It is extremely exciting to see how much of an airway she has now!!  Dr. Cotton, the ENT here, will make the decision about whether we can consider decanulation, but I would consider this a huge success if we are able to just cap her trach and she is able to start swallowing food and speaking more clearly.  We used to be so eager to get her trach out, but now that we have gotten comfortable with her trach, it is actually scarier to imagine not having it for future surgeries or if she ever had to be intubated in an emergency.

All for now.  I hope to post again this weekend if I have time, but my parents are arriving Saturday evening so no promises!

Robin

Faith's progress, Terry's visit and Grandma & Grandpa's arrival

Faith has been doing so great through this jaw distraction surgery.  She has not had much discomfort at all and is only really unhappy when I am turning the pins, but otherwise she has completely shocked me by just how easily she is coping with the whole thing.  Aunt Terry came to visit last week, arriving on Wednesday night and leaving on Sunday. We had such a nice time together and Faith bonded with her again so easily.  

Aunt Terry and Faith

Testing Aunt Terry to see if she really has to

clean up her new markers

Darling hug goodbye - she will miss you tons

The jaw distraction itself is making some noticeable progress now.  Today is roughly day 12 of turning Faith's pins (I say roughly because I'm not counting a couple of turns when the screws had pulled out of the front of her jaw).  I thought the process was a bit more cut and dry than it is -- I thought that because the distractor rods are 30mm and we are turning 2mm a day that we would be turning for 15 days, but it turns out that it's not cut and dry.  When the pins were adjusted last week they were backed up a bit and that can be done multiple times, so I guess it means we'll just have to wait and see when the turning will be done.  In any case, you can see that Faith's lower front teeth are now roughly directly below her upper front teeth when they used to be  a good 1-2 centimeters behind her upper teeth.  Dr. Gordon is planning to continue distracting for awhile more if he can and get as much new bone growth as possible.  Faith will be going back under anesthesia tomorrow for another hardware adjustment and I guess he will decide how to adjust the pins to see how much more we can turn them before we are done.  I got to see a new xray on Tuesday too, show a good centimeter of airway that was previously blocked by her tongue so that was the best news and exactly the goal of this surgery.

One of the downsides to the progress so far is that her front teeth are getting completely rearranged in a bad way, they were actually fairly straight but a little crowded before the surgery, but now they are just a big mess, new gaps between some teeth and piled on top of each other in other places.  I'm hopeful that the hardware adjustment tomorrow will help since it should not be pulling on the front two teeth as much.  But, despite everything, Faith just acts like nothing is hurting much at all.  In fact, she has actually been much unhappier about an ongoing issue with her feeding tube button which has been bothering her occasionally for many months now and unfortunately has gotten much worse while we've been here.  We don't know what is causing that issue but are going to see a pediatric  surgeon while we are out here to see if they can figure it out (that appointment is on Monday).  

Grandma and Grandpa also arrived this week on Wednesday and will be here through next Tuesday.  Faith is enjoying them very much too.  I'll post some pics of their visit soon, but for now, here's a few of Faith opening a special present from Grandma and Grandpa's good friend Jeanette -- she just loves it!!

TA DA!!

Will definitely do another update over the weekend regarding the latest surgery, but I'm expecting it to be another fairly simple and straight forward surgery and us being home fairly quickly after it's all done.

Best wishes to all!

Robin

One week later

Sorry it's been awhile since I've posted, but things have been busy!  Faith's surgery went well last week, but as many of you know, she had to go back to surgery yesterday for a hardware adjustment because the two front screws had pulled out.  Below are some pictures from her surgery last week:

Anthony patiently hanging out in the 

waiting room while Faith was in surgery

Faith just waking up from Anesthesia

Anthony's first time to see Faith the next morning

Faith's new hardware

At home, after getting pins turned; not happy, but doing okay

Turning her baby doll's pretend pins helped her forget about her own

Doing puzzles with Daddy totally back to normal

Fred and Anthony went back to Colorado yesterday morning, it was sad to see them leave but we are doing video calls so we can at least see each other and the kids when we talk. Being apart for 4 weeks stinks and really why was it so important for Anthony not to miss 6 weeks of PRE-school??  I know it was best, but sure not liking it right now!

Yesterday's surgery (Faith's 7th) was very fast, less than a half hour and thankfully the recovery nurse was really helpful in trying to get us out of there  quickly so I could get her into bed at home instead of being there for hours.  Faith was very upset after this surgery although we were pretty sure she wasn't in pain because she was stilled numbed with a local anesthetic in her mouth and she would shake her head "no" when I signed "owie?" to her.  It was the first time she had fentanyl for pain med (a different narcotic instead of morphine), so perhaps she doesn't do well with that one and we will try to avoid it in the future.  

Today is day 5 of turning her pins and I think we will be trying to turn for about 10 more days give or take a couple.  I personally can't tell yet if her jaw is moving forward, but I will take some new pictures in another day or so and then post some before and part way pics to compare.  

Terry is on the road now, just called to say she has about 2 more hours to get here - it appears to be turning into a much longer drive than expected!  So how did both Perry and Keenan know better than Google Maps or AAA that it wasn't going to be an 8.5 hour drive?  Has nothing changed in all the years since you guys did this drive (for college I'm guessing?).  I feel bad about it taking so long, but so happy she is coming.  Faith can stay up late tonight so the long drive will have been worth it for her!

More soon,

Robin