Surgery Went Well

It's 7am on Wednesday morning, Faith's surgery went really well yesterday but I was too tired to write anything so I just uploaded some photos from my phone.

The surgery went relatively fast yesterday, she went in at 10am and was out by about 12:30.  Dr. Cotton (ENT) looked at her airway first and they decided to wait to do her tonsillectomy at the next surgery when her jaw is bigger and she has more space for them to maneuver in.  I was a little annoyed with this because we could have done surgery last week if they weren't going to do the tonsillectomy and now Dr. Cotton will be in England when we do the next surgery (May 22), so he said someone else can do it, which is another change when we scheduled it over the phone.  Then he told his schedulers that he needed to be the one to do it.  Rescheduling wouldn't be a big deal, if it hadn't been for her missing her last days of school, but in the big scheme of things it will all work out fine.  I am planning to throw an end of year /welcome back Faith party and invite all the first graders (really just a park gathering with a big cake!)

Anyway, Dr. Cotton did a bronchoscopy and then came out and spoke to me, showed me pictures of her airway, the tonsils, her trachea and the top of the bronchi (where the two branches of the lungs split off at the top).  He said her airway looks very good, no issues other than her jaw.   So they will plan to remove her tonsils and do a scope through her nose to look at her adenoids to decide whether to remove those as well.

Once Dr. Cotton completed his part then Dr. Gordon started working on her jaw.  First he took off the metal plate that was connecting her original jaw with the new scapula bone they added last summer and he said it has healed really well. Then he decided where to make the cut on each side. On her left, where they did the graft, he cut in front of that on her original jaw bone, on her right side which was not missing any bone, he cut further back starting in the ramus bone and going through the mandible bone.  It's hard to explain in writing, but it's called a saggital split, in other words, instead of just cutting the bone straight across the bone, it's a length-wise cut, giving much more surface for new bone to grow.  Think of it like putting the palms of your hands together then then sliding one forward and one backward, compared to just your fingertips meeting and then being pulled apart.

After making the cuts, I think he put a wire through the front of her jaw, across the chin and that wire comes out of jaw through the skin and attaches to the purple halo device, called a Rigid Extraction Device (RED) which is screwed up against her head (not into the skin/skull, just pressing against the sides of her head).  So this is completely different than his traditional external jaw distraction or the internal distractors she had when she was 2.  There are no actual pins, just this wire tied to the RED device and anchored to the front of her jaw.  We turn two screws on the RED device that shorten the wires, which pulls her jaw forward a milimeter each time we turn it.  We have to turn the pins twice a day, so about 10mm/1cm every 5 days.  I think we will be turning for about 3 weeks and then we stop and let it consolidate for aother week or so.

I turned the pins last night and again this morning which didn't seem to bother Faith.  It will probably get a little more painful as she heals from the surgery itself and as the skin and soft tissue around the jaw becomes more stretched out.  This is one of the things I hate about Dr. Gordon's distractions - they end up looking like the character from the Scream movie and apparently thats what they tell parents nowadays!

We switched Faith from Morphine to Oxycoton (sp?) this morning, which is given orally (or through the G-tube in Faith's case) and not the IV so they were able to disconnect her IV tubing which means she is able to get out of bed a lot more easily to go to the bathroom.  She's been getting out of bed since yesterday evening to do that and it was a pain having to disconnect her from the pulse ox and the leads for heart monitor and her feeding tube and then unplug the power to the IV pole, and maneuver that around the bed and bathroom door that were too close together, oh and help Faith get out of bed and give her a hand in case she felt wobbly.  We still have to disconnect the pulse ox and heart monitor, but just not have the pole to deal with was a big improvement!  Faith is doing well sitting up and getting in and out of bed by herself now, but she still can't use her left arm because they won't actually take her IV out until we are ready to be discharged tomorrow.  I'm guessing we could have gone "home" today, but it's good to have one more night to have more time to ask questions and have access to any supplies we need.  The other big challenge is that I'm having to suction her every 15 mins or so, and it's very tiring!  They have her bed low so she can get in and out of it easily but that means I'm bending over a lot to suction and my back is aching!!  I've also gone through dozens of suction catheters, maybe a hundred by now!  And since we almost never suction her at home, we definitely didn't pack enough to get through the rest of the weekend at the Ronald McDonald House if this keeps up!

Faith is doing pretty well overall, not talking but trying to sign and is using more of her finger spelling for signs she doesn't know or remember anymore.  I think she'll start trying to talk soon, although it might be even harder to understand her right now.

Well that's about it for now.  It's taken me almost 5 hours to write this as I've had to stop and suction or help Faith get out of bed to go to the bathroom, or talk with the residents or nurses.  Being in the hospital is hard work!!  Looking forward to being back at the Ronald McDonald House tomorrow night.  I'll try to post some more pictures soon after we try to clean up some of the dried blood on her chin.

Thanks to everyone for reading, posting comments, sending emails and all the good thoughts and prayers, we really appreciate it.