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.