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

All going well

Just a really quick update to let everyone know things did go well with Faith's surgery and she and I are in bed together upstairs in the pediatric ward now and amazing Faith seems pretty happy right now.  She's on morphine so I'm sure that helps, but after some long hours of holding her in my lap and her seeming fairly agitated when i talked to anyone or anyone came near her, now she is happily watching Noggin TV and signing and trying to talk and even sing.  I think she thinks this is kind of special because at home Anthony gets to watch TV in his room at night when she just has to go to bed.

We talked with Dr. Gordon after the surgery and found out it took longer because he had to make a lot of tweaks to the device they were attaching to her bone -- so he'd walk back and forth between her and the back of the room trying to see if it would fit and tweaking it some more.  He said that made it really tedious work, but he needed to get it right.

Well it's late and Faith has fallen asleep in my arms, so i think i'll try to get some sleep now too.   Thank you all so much for the many emails checking in and prayers and well wishes.

Robin & family

(Lindsay, it is great to hear from, was meaning to email or call you and see if there was any way for you to come visit, but couldn't find the time - so sorry).

Faith's Jaw Distraction

Currently in Progress

So it's been since 9:15 am since Faith went back, just over 3 hours ago.  First she had a MLB (something Laryngoscopy Bronchoscopy) by the famous Dr. Robin Cotton (he's famous among kiddos with trachs and airway issues anyway), his part took about 15 minutes or so and he came out and talked with us and told us her airway below her trach looks great but that as expected, her upper airway (back of her mouth) is still significantly blocked by her tongue.  He thinks that the jaw distraction will be the main surgery she will need to eventually get her trach out, but he cautioned that we should proceed very slowly in making the decision to decannulate (take out her trach) her.   He thinks she may also need a tonsilectomy in the future to help with creating adequate space in her upper airway, which is fairly typical for kids like Faith with micrognatia (small lower jaw), but we haven't heard that from anyone else yet.  Plus it can cause speech issues, so I'm not too happy to add that to her list of future surgeries and will definitely be hoping it isn't needed or that maybe "shaving" her tonsils instead is an option.  I actually don't know much about shaving the tonsils, but I've been hearing other parents talking about it as a newer option that some doctors are now doing, so something new to start researching down the road.

Dr. Gordon has been in surgery with her now for close to 3 hours and I'm starting to feel very nervous about it.  It's hard to know that her surgery is taking a lot longer than initially expected - how can that not be concerning that something is not going well?

Ahh, it's over.  Gotta go meet with them.