Past, Present and Future

FIVE years since I posted last? Time to catch up!!

Wow, shocking that I just quit updating Faith's blog and right in the middle of her last jaw surgery! Embarrassing! Writing has always been therapeutic for me - it helped me so much when Faith was little and I couldn't think about anything else besides what we should do for her.  Medically first and foremost, but socially and academically as well.  I used this blog to think through so many of those decisions, while hopefully providing good updates for family and friends.  I think technology took over to a large degree, it just got easier to upload pics from my phone to group texts or FB and when your child is in the hospital it's hard just to find time to eat or shower, let alone find time to sit down and write.  Writing requires concentration and time - something you just don't get a lot of when you're in the thick of it.

Anyway, I will eventually take some time to catch everyone up on how her 5th jaw distraction went in detail and with pics, but as a quick summary - it went a lot like her others, she was an amazing trooper as usual and even went back to school off and on wearing her RED (Rigid Extraction Device) halo, which is rather barbaric looking.  Since it was in October, she decided to be Frankenstein for Halloween - and I have to say - it was like she was making fun of my biggest fear when she was 2 and we decided to get her hearing aids implanted which meant putting 2 screws into her skull, one on each side right behind the ears.  After the implants were in though, I never thought about it again, it was so important to her hearing and it felt like they were just part of her.  Life is very strange! Anyway,  I will have to find those Halloween pics.

The jaw distraction itself seemed to go well, Dr. Gordon over distracted as he usually does, but for the first time when he took the hardware off, he decided to wire her jaw shut for another 3 weeks to help the new bone solidify.  She was so upset waking up from the hardware removal surgery to discover her jaw was wired shut.  I remember it well because it was a week or so before Thanksgiving and she couldn't eat and she was devastated.  We'll probably never do another surgery right before Thanksgiving again!! 😂

Much to our disappointment just a few months afterwards, her jaw seemed to lose all of the growth and possibly more.  This was the first surgery out of 5 that didn't seem to be worth doing it.  I know so many families that have had plenty of bad surgeries and it just scares the crap out of all of us as parents to know whether any of these surgeries are the right thing to put our kids through or not.  You can never be sure - there are no guarantees and you get different opinions from every surgeon you talk to and in the end you have to make the decision based on your own gut and from all the information you have. 

For Faith, each jaw surgery she has been through helped her on her journey, the first one helped her start vocalizing around her trach and beginning to speak (she couldn't make any sounds most of her first year - meaning she never cried as a baby), her second was her big scapula bone graft at 5 years old when they took the bottom of her shoulder blade to build the part of her missing lower jaw, that one really improved her airway and maybe was when she first began to smell (due to her nasal passage finally being open), the third one was another jaw distraction and around the time she finally began to swallow real food!  I remember my fairly new neighbor taking Faith to the movies with her girls and texting me to say Faith had a slushy and I replied "no she didn't" - she thought I was mad at her for letting her have that, but I was saying she couldn't swallow that much and then discovered she really did!! 

Her 4th jaw surgery was her mid-face advancement, the surgeon cut both her upper and lower jaw and grew new bone resulting in advancing the lower half of her face.  It was one of the harder ones to watch her go through, but it was so successful and that was when she was able to start capping her trach all day and only needed it at night for sleeping.  That was also when we began doing sleep studies to start trying to see if it was enough to get her trach out completely.  It was so close!!!

Which is why she made the decision to have her next (last) jaw distraction in 2016.  Her reason for wanting her trach out has been for a single reason for many many years - she wants to learn to swim and she just can't with a hole in her neck (although she tries and it scares the sh*# out of me all the time)!  So after the last (5th) surgery was done, she had her 2nd sleep study and it just wasn't much if any improvement from the last one.  Faith kept hoping it would get better but we did another sleep study last summer (2020) and it was her worst one yet - something like 70 apneic events per hour (over 30 is bad), and I'll tell you trying to sleep in the same room as your child and listening to them gasping for air is anxiety-inducing and not much of a sleep aid!! About half-way through the night they gave up on it and opened her trach back up and put her on oxygen.  It was kinda devastating how much worse it was than the last one.

So that's the background the led up to last night...

Sleep Study #5 - Last Night

Before Faith's last sleep study, her ENT mentioned to her that if her sleep study wasn't good enough, that CPAP could possibly be an option to get her trach out and start using CPAP.  When I heard it I thought, why would would do that?  She has a really great airway with her trach, and at night all she has to do is take her cap off and put a filter on the trach - about 10 seconds.  I couldn't imagine anyone wanting to be connected to a machine if they don't have to be.  Then she had the study and it was so bad we knew we would have to wait until she had another jaw surgery before doing anything else.  But somewhere in the back of her head was the ENT's comments about CPAP and she never forgot about it.  So at her last appointment with him she brought it up again and told him she wanted to try it out.  And he thought it was a good idea and that it is very likely that she will need CPAP for a transition period after getting her trach out anyway, so it would be good to practice wearing it.

So for the last month or two Faith has been wearing the CPAP headgear (covers her nose) and seeing if she could keep it on all night. And she did! So then they scheduled her sleep study, which was last night.

As prep for doing a sleep study they put about a dozen electrodes all over your head and face and then wrap your head like a mummy - it looks super uncomfortable, but she handled it just fine. Here she is sleeping with both her head wrapped and the CPAP on.

And SHOCKER of all shockers - she slept really well with it on!  I never heard her gasping for air even once.  So now we wait to hear the results and what's next.  She still won't get her trach out until she has at least one more major jaw surgery, which we are waiting until she is done growing (maybe next summer).  

But it's super exciting for her to have a positive sleep study after all these trys.  

And now I'm falling asleep - so it's time to call it a night and I will try to write again soon.

Thanks for reading!

Robin