Cincinnati Visit and Options to Weigh

Faith and I went to Cincinnati to do a follow up appointment with Dr. Gordon and talk about options for what to do next with her jaw a couple weeks ago and we have a lot to weigh to figure out what's next. 

We flew into Indianapolis and spent the weekend at my Aunt Linda's and cousin April's house and had a wonderful time seeing them as well as Aunt Peggy, Uncle Steve, Lori and her family and Sharon and her family - thank you all so much!!  Faith especially enjoyed hanging out with Wesley, playing on the trampoline, and following Sophie around!

On Monday we drove to Cincinnati in horrible driving rain (as bad as a blizzard - I could only see 10-20 feet in front of me at times!! scary!), luckily that was only the first hour and a half of the drive (which should have taken just 30 minutes)  and then it was easy driving the rest of the way.   When we got to see Dr. Gordon we chatted for a bit and then went downstairs for x-rays and then came back up to talk again.  He was very surprised to see how good her airway looks, and said he didn't expect it looking at her, although he did notice her speech was very good - said he never heard her speak when she was out here as a two year old! So we talked about 5 different options, each with some pros and cons which we will have to think about and figure out what we think is the best option for Faith.

Here they are.  Feel free to comment and let us know your thoughts, we are leaning towards one option and I'll explain why, but we want to make sure we are thinking through everything.

1.  Do Nothing for now - basically her airway is good enough and we could leave her trach in and put off surgery for a few more years. 

• Pros:  Less surgeries in the long run.  Right now we are probably looking at 2-4 more jaw/facial reconstruction surgeries, when she is 5-6 yrs old, 9-10 yrs old and 16-18 yrs old, and possibly more in between.  If we waited until she is 10, maybe she would only need one more between 16-18.  This is a big deal to not put a child through really painful surgeries.  Also medical technology in this area could continue to improve and provide us with more/other options.
• Cons:   Faith would have a trach for as many more years as we put it off.  This means dealing with continued social issues from the trach itself, drooling, bad teeth, as well as continued speech and swallowing issues (although she is making great progress in both of those areas!)

2.   Free Flap - Scapula bone graft. This surgery is a bone graft taking bone from the shoulder blade (scapula) with a blood supply and inserting it into the jaw where she is missing bone.  Dr. Gordon said his colleague there has been very successful with this approach. 

•  Pros:  Using bone with it's own blood supply (unlike a rib graft) can be a very successful way to reconstruct the underdeveloped area with less risk of failure.  Although we didn't really discuss the details, I believe the surgery would be a single surgery with a few days of recovery and maybe a follow up a week later before we would go home (will have to ask all of these questions if we want to go this route).
• Cons: Taking bone from another location in her body will leave a lifelong scar and possible deformity, although not as bad as taking the Fibula bone in the lower leg.  Additional pain to recover from in a second location.  Risks of graft failure - of the blood supply or the bone (but again, a lower risk than a rib graft).  Risk of overgrowth - sometimes the new bones grows too well and requires additional surgeries to trim it back.  overgrowth can also lead to something called bony ankylosis - which means the jaw joint would be locked in one position unable to move freely.  These are all the risks I didn't like in doing a bone graft the first time around!!

3.   Implant/Graft Cadaver Bone. This is a fairly new approach  Dr. Gordon has recently begun using that he believes is very promising. He would take cadaver bone, wrap it in growth hormone and some other tissue and it would be inserted through the scalp behind the ear.

• Pros: No secondary (donor) site for healing/scarring concerns.  No external scars on jaw.  Has worked well in the cases it's been used.
• Cons: New, therefore, long terms results are not known yet.  The location where they would insert the bone on the scalp is the same tissue that is used for one type of ear reconstruction that we may want to consider down the road.  Need I say more?

4.  Internal Jaw Distraction  This would be a repeat of the distraction Faith had at 2.5 years old - where the jaw is broken and we turn pins two times a day to grow new bone.  These distractors are placed inside the gum line and would need to be in place for 5-6 weeks like the first time.

• Pros: No external scars.  Dr. Gordon has been able to improve the technique since the last time Faith was there, which means he has a better way of attaching to the front of the jaw and would hopefully not require the weekly minor surgeries for adjustments she had back then. Probably more comfortable for Faith than the external distractors.
• Cons: Longest time needed as he cannot check the bone stability before removing the hardware and therefore would leave them in longer (5-6 weeks) just to make sure it is solid. Less control than with the external distractors.

5. External Distractors.   Two pins would be placed externally, through Faith's jaw (from one cheek through to the other side - sorry I know it sounds gross) one pin through the back of the jaw and one through the front and a bar connects the two pins and we expand that bar daily just like with the internal distractors.  In addition to this, Dr. Gordon would want to use the halo device (see my earlier posting about Katie and a link to her page to see the RED device) to help pull the jaw upward. 

• Pros: This is Dr. Gordon's traditional distraction technique that he has gotten solid results from repeatedly.  It would take 3-4 weeks instead of 5-6 weeks.  Jaw distraction is lower risk than a bone graft in my opinion.  
• Cons: external distractors and head gear may be much more uncomfortable for Faith for the time they are in place.  Longer time involved compared to a graft.  Chance for external scarring from the pins, although Dr. Gordon has had better results than many surgeons.

So, you can see it's a lot to think about and try and choose one option. We are leaning towards the last option.  While it may be the toughest surgery for her to go through (well, the scapula graft and internal distraction might be about the same), we think it has the lowest risks with the greatest results.  My next step is probably to discuss some of this a bit further with Dr. Gordon.  He did say he is pretty confident another surgery will result in her trach being removed, which is what makes waiting so hard to consider!

Hope you all had a wonderful Thanksgiving!
Love to all,
Robin