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!