Heavy Head

Here's KT with the R.E.D. device on. For this week, we're just turning the top screw to pull her lower jaw up to its proper position. The turning doesn't seem to bother her at all, so that's good, but the pins in her skull are troublesome - mostly on the right side, because they are very near to where her titanium screw implant is located, which holds here BAHA (Bone Anchored Hearing Aid) in place. However, she's had a couple of really good days. Today was especially nice because her Young Women group at Church Skyped with her, to let her know they're thinking and praying for her. They also sent a Care package that she received yesterday. Since friends are EVERYTHING to KT, that was especially uplifting.

The other neat thing about today was the G'ma & G'pa Whicker and her Aunt Rache arrived from Utah! So that was really fun!

Note KT's use of the iPad she received just before we came, as the Student of the Year at Dixie Middle School. She's used it communicate with us when she can't speak, or when she can't make herself understood. It has been a very useful tool!

Still looking to the big LeFort surgery on Wednesday with faith and anticipation. It's purpose, once again, is to create new bone to pull her upper jaw out to meet the new position of the lower distracted jaw.

KT does say that the RED is heavy and makes her neck sore; it actually weighs less than a pound, but you can see that just that much would be pretty straining on the muscles that used to just hold up her head. She's looking for a good neck massage if anyone wants to volunteer!

Thanks for your prayers of faith in her behalf.

Rotation

KT is doing much better since yesterday. We visited the pain team, and they helped her with some new medications. We also visited Dr. G, and he loosened two of the screws embedding the R.E.D. into her skull. But honestly, the thing that helped her the most was the visit of her sister, Tara, and her family. They're on their way home from vacation in Michigan, so they swung by (200 miles out of their way), just to spend some time with us. It was an incredibly uplifting visit. KT LOVES her nieces and nephews, so being able to spend time with them was well worthwhile and made her forget all her woes. Thanks, Andy & Tara, for making that happen!

The picture below tells the story - we are definitely making good progress. It all takes time, and there is definitely significant pain involved. But it's these pictures of proof that keep us going. The turning of the screw to raise her lower jaw angle doesn't seem to bother her too much, so we're trying to accelerate it so we can be sure it is in the right place in time for Wednesday's LeFort III surgery.

Wednesday will begin the toughest stage of all - her eyes will be swollen shut for a couple of days, and she's going to look like she's been through a beater when she comes out. Yes, she's scared; yes, we're scared. But we know it is the right thing to just continue and plow through this last step. Please join us in our fasting and prayers tomorrow, Sunday, 24 July - Pioneer Day in Utah! It kinda feels like we're going through the Refiner's Fire this summer, something like what the early pioneers had to endure - only it's our child that's suffering, and we have to just do our best to comfort and sustain her. It's a pretty helpless feeling. Thanks for your love and concern!

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Device

The R.E.D. Device was implanted successfully on Wednesday, but the pain has been intense ever since. This thing is supposed to be pretty tolerable, but she's having a real hard time with it. We saw the pain team this morning, so they added a new narcotic to help her. We're getting an X-ray right now to make sure everything's seated correctly. We see Dr G in a half hour.

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Friends

Guess who surprised us with a visit? Our very best neighbors in Virginia, the Schnacks! Pam cried, and KT lit up with joy! (I was actually in on the surprise, but I did a great job of keeping it from them until they were actually standing in our midst.) Notice KT's open airway - you could drive a truck through that open airway now! Thanks, Lydia and Kristina, for making our day yesterday and today! It was like a needed ray of sunshine infiltrating our lives.


Well, Wednesday begins Stage 2 of this long, drawn-out process. Dr. G will install the R.E.D. device (see previous post), to rotate KT's jaw upward. The two vertical bars on her present configuration will be removed, but the horizontal pins will remain in place to use in this next effort. He says he's going to be pretty aggressive during Wednesday's surgery, to force her chin upward and wire it in place. If it's too much, and KT can't handle it, he'll release a bit of the pressure and allow us to gradually tighten it again in similar fashion to how Stage 1 worked. We'll see.

KT was pretty quiet after our appointment today; she buried her head in my chest as she always does when she's worried, and whispered to me that she didn't want that device on her. I don't blame her - it won't be fun, but according to everyone we've talked to, it is more tolerable than the distraction she's already undergone.

Please say an extra prayer for KT Wednesday afternoon. We're an "add-on" that day, so the surgery won't happen until after 4 pm EDT. Too bad it's that later in the day, but beggars can't be choosers!

R.E.D.

This is the device that will be implanted on KT's head next Wednesday, 20 July. Called a "RED," for Rigid External Distraction device, its job for the first week is to rotate her lower jaw upward, so the lower arms will be attached somewhat differently than what shows in the picture. However, the same device will remain in place when the LeForte III mid-face distraction surgery is performed on 27 July. Its function at that time will change; it will be connected much like what is shown in this photo, to pull her upper jaw forward to match the new location of the lower jaw.

As you can imagine, wearing this thing will not be comfortable. But maybe it'll make a new fashion statement! Instead of teens piercing their noses, tongues and other places, they'll want to be just like KT and wear this kind of device to make their piercings useful.

She'll be wearing this thing for a full two months total: from 20 July to approximately 17 September. The last month of the wear there will be no turning of screws or other movement; it will merely be holding all the newly created bone in place as it hardens and settles into its permanent configuration.

40

We stop turning the screws on Monday, after FORTY DAYS AND NIGHTS of turning those things! KT, of course, has had enough, but is putting up with it. There is definitely a lot of new airway there - I can hear it in her breathing at night. The pain specialist today had her finger-cap her trach and breath as he listened in the stethoscope, and he could hear a LOT of air moving through there! And KT herself could tell that she was getting plenty of air. So the objective of this exercise in torture is being met!

We now have the rest of the plan pinned down, barring any unforeseen circumstances:


* Mon, 18 July - we stop turning the screws on the lower jaw
* Wed, 20 July - she undergoes surgery to install the R.E.D. device (Rigid External Distractor), which will initially be used to rotate her malleable new bone upward, as it has been grown straight down and now needs to come up and around to the normal plane of a lower jaw. (More on the RED in the next post.)
* Wed, 27 July - the most difficult of all the surgeries, she will undergo what is called the LeForte III mid-face distraction process. This is to bring the upper jaw outward to match the new lower jaw, using the same turn-screw technique, but for a shorter period of time. While Dr. G is in there, he's going to build some cheek bones, do some eye orbital bone work, and a couple of other touch-ups here and there. This is major surgery, and we are proposing a fast for her on Sunday, 24 July, if any of you want to join us (or fast anytime that week that is convenient for you). There is a danger of excessive bleeding. She will be in ICU for one night, and then in a regular hospital bed for 3 to 4 days after, if all goes well. Grandma and Grandpa and Aunt Rache will be here to help us through this piece of the project!
* Mon, 1 Aug - Glenn will fly back to St. George to conduct a JROTC summer camp, and to begin the school year. Aunt Rache will take the "night shift" duties with Katie. (She is the only one outside of her immediate family that would suffice for this duty, according to KT!)
* Wed, 17 Aug - stop turning the screws on the upper jaw. At this point, Glenn will fly back to drive the family back home. KT will retain the hardware and will get home schooling for about 4 weeks so as not to expose her to accidental bumps at school.
~ 17 Sep - We all 3 fly back to Cincinnati to have the hardware removed. At this time, he will also remove all 4 wisdom teeth. He has not wanted to do that until we're finished because the teeth themselves make up a large part of the strength of her deficient jawbones. If all has gone according to plan, he will also close her tracheostomy, and she'll be rid of the trach forever! YEA!

Thanks again for all your prayers and faith on her behalf. It really is working!

Priorities

Despite enough discomfort to require an ice bag on the head, KT religiously checks her Facebook and email regularly. So don't forget to write her!

Klondike

Even as she was saying how much she hurt, an ad came on the TV for the Klondike ice cream bar.  The jingle, as you may be aware, sings:  "What would you do for a Klondike bar?"  KT immediately stopped signing "pain," smiled, and said, "I'd get rid of these things," pointing to the hardware in her face that keeps her from eating anything by mouth!  Pretty funny.  She then switched right back into complaining of her woes...

Sleep!

KT slept thru the entire night for the 1st time since May 31 last night! Yeah! I couldn't believe it. Of course, by the time she woke up at 9, she was in quite a painful state - I should have given her a dose of meds while she was sleeping when I got up earlier. Still, this is a great sign.

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Independence

KT enjoyed time with 7 of her 10 nieces and nephews on the 4th of July. It was a nice break. She tried to do too much, though, and was hurting badly by evening. Still, it was worth the effort. Overall, progress is good now.

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