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.

Hi everybody I just meet my new teacher today she is nice i love her I CAN NOT WAIT TO GO TO SCHOOL. It was a long time since i went to school and I am ready to go back to school:)  ok well better let you guys go see u next time 

                                                                 by,

                                                                        Faith Kargoll 

hi everybody it is me faith we are going to do another srgrie in otober so ya i can not blevele that we ole have 1 moth left of brake and i am going to be in forth grade alred :(:(:(:(:(::(:(:(:(:(:(:(:(:((:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(:(: bye,
                                           faith kargoll :)

MY NEXT POST
By,
Faith kargoll

It has been a short school year this year and I got a great teacher this year.
First, my teachers name is Mrs.Bauer she is a great teacher. 
Next, I have a great class and that is all I want right now.
Last, I have a great friend named Ellen we new each other sens we where little and we are back together again :)

Faith is taking over blogging

Faith is starting to have lots of her own ideas about her surgeries, what she wants to have done next and when, like getting big ears, opening her ear canals and her next jaw surgery; and since I can barely keep up with my own email, I think it is time to let her take over this blog!  Here goes...

In Faith's Words

First, I had this idea that I would have my next jaw surgery in October.
Next, you know that when I have a surgery I always get scared but not this time because I have a lot of confidence in side of me.
Then, I know I will not be able to eat and drink but as my dad says "get it done now or get it done when you are older."
Last, it will be all done and hopefully I can get my trach out and take some swimming lessons like my brother Anthony.

                                                                                 by,
                                                                            Faith Kargoll

Coming to the End of JD#4: Removal Plus a Lot of Other Stuff

Can't believe I didn't post for the last 3 weeks since we left Cincinnati!  I pretty much went right back to work once we got home, so the days flew by, but we came back on Thursday (7/30) for the final surgery for this Jaw Distraction (JD#4).  It went very smoothly, took just four hours even though Dr. Gordon did a lot of "stuff" in this surgery including:

1. Removing her distractors (the headgear she's been wearing or Rigid Extraction Device aka, "RED" device, even though it's purple!)
2. Rhinoplasty - basically the cuts he made in the first surgery cut her nose bone and maybe her septum so it was laying very flat on her face and was rather distorted.  He stood it back up, trimmed some of the new bone and shaped it to have a little bit of turn up at the end the way most little kid's noses do.
3. Genioglossus - you can look this up if you want more details, but this is a chin advancement by using her existing bone and moving it forward.  She didn't have much of a chin before, so this is a big change - I'm hoping functionally it will help her in controlling her saliva (drooling) better.
4. "Spackling" - this is Dr. Gordon's very technical description of what he does to add a bone paste in areas that need some additional bone and contouring - so he "spackled" her cheekbones   under her eyes and some on her chin and not sure where else.
5. Shaping her jaw - I didn't get to much detail on what he did, but basically all the new bone is still soft (think about a piece of gum that you stretch out to make it long) and he can bend it a bit to give her jaw line more of a natural curve.  I can't easily see what he did, but that's what he said he was gonna do.
6. Removal of her "bubble" on her lower left jaw - this was a skin pedicle from her scapula bone graft (when she was 5 and he took part of her shoulder blade to create the missing jaw bone, called the ramus).  This graft included some blood vessels and soft tissue and to easily see that it all survived in the new location, they take some skin with it and if the skin stays healthy and pink, then you know everything else is doing well too.  But, the skin bubble doesn't look great and finally after three years, he has removed it.  He stitched the site closed with internal stitches and then crazy glue for the outer layer to minimize scaring.  The scar is right on her jaw line, so hopefully even if there is a scar it will be just under her jaw as she continues to grow.  
7. "Debride" teeth - Faith has had some teeth that were identified by the dentist and orthodontist back home to come out, but since Dr. G can't "pull" teeth he just aggressively cleaned them and they unfortunately fell out.  ;)  One was a baby tooth that was hanging behind her new adult front tooth and has been loose for over a year but just hadn't fallen out on it's own yet, another was an adult tooth that came in very badly - down in the bottom of her front lip - not much hope we could have ever moved it into a better location and we weren't succeeding in keeping it clean, so it had to go.  I was surprised there was a third tooth in the container too, but it has no root, so I guess it was a baby tooth also. I'm not sure where it came from yet, but will ask him later if I remember.

Coming out of surgery was a bit difficult, but not quite to the same extent as the last time.  Because all the work he was doing was in her mouth and nose, the blood all drains right down her airway and they have to keep suctioning it out through her trach.  It took about 2 hours for them to bring me back to see her, which for me is worse than waiting for the surgery to be done because I know she is awake and I feel guilty not being there.  The nurses said once I came back she finally calmed down which them made the amount of suctioning go down significantly.  I guess I need to start getting pushy about wanting to be called back as soon as possible in the future.  The good thing about this Children's Hospital and probably many others, is that they really want to know what makes it easiest on the child - i remember they used to skip taking her BP when she was small because it upset her too much.  They used to let me be the one to start her anesthesia when she was little because she handled it better.  But they don't like bringing parents back to the PACU (Post Anesthesia Care Unit) when the kid is bleeding a bit uncontrollably and they don't have a plan yet for where they are going to be admitted.  I have to be a little pushier to let them know she will do better if I get back there sooner and I'm not one of those pushy parents who would care if they don't have a plan yet (see the irony, you have to be pushy and say you're not a pushy parent - guess it's all about balance!!)

Anyway once I got back there I ended up getting put to work, Faith only wants me to do anything to her, so when they wanted to change her to a cuffed trach again she wanted me to do it.  Dr. Gordon got called back to work again too after he had gone home because she was having issues and they needed her primary Dr to give them directions about how he wanted it to be handled.  I felt bad, but at least I got another chance to talk with him about next steps.  He had mentioned right after the surgery that he might want to wire her jaw shut and after he left and I was sitting in the waiting room for 2 hours I didn't really know what he had said.  I was dreading the thought that he might send her home again with her jaw wired shut (she is dying to EAT and TALK again!!), but instead he clarified that it would just be for a few days before she would go home.

We ended up going to the PICU again due to the bleeding and I spent the night getting up every 20 or so to suction her trach out.  It's so exhausting to do that all through the night.  I am so grateful that even though she has had a trach for 8 years the last 6 of those years have been mostly easy except for a few colds and her surgeries.  I know we will be right back to that in a few more days, but right now I'm a bit sleep deprived!!

We have been having a great day today - graduated out of the PICU and over to the Complex Airway unit where she will stay for another day or two and then she'll be discharged (unless the wiring thing happens, then I'm not sure how long we'll stay).  She got her catheter out this afternoon and started her feedings, but she is still sleeping almost non-stop.  After getting her all settled down after the move I decided to head to the Ronald McDonald House for a break where I'm eating and typing this, but it's time to go take a nap!!

I'll add a picture later today - I'm having issues getting it from my phone to my laptop - limited internet connectivity.

Will try to update again soon.