Calm

KT had a very calm night and day. Lots of meds, but tolerable. Looks like we may be able to enjoy the weekend in MI with the Fords after all. Yeah!

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Out

KT's out of the hospital as of 7:30 pm EDT, very swollen in the face. She kept signing that she wanted to go home, so we said that's where we're headed. "No!" She said; "I want to go home to UTAH!". Poor girl is so tired of pain. She's enjoying soaking I the tub for the last hour. Were hoping tonight will be restful.

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Charm?

We were hoping the 3rd time would be the charm, but so far, not so. KT had her pins repositioned yesterday morning, but when she woke up, they had a very difficult time getting her pain under control, so they admitted her to the hospital for overnight. She didn't do very well overnight, awakening each 1.5 hours in pain. We can only hope things will improve today (Tuesday). Dr. G felt like he had to move the bars closer into her face, because the bone that was being created wasn't as strong as he thought it should be after sitting for a week without turning. So he's trying to stablilize things more. But it seems like that is less tolerable for KT. She's again complaining about the back of her head and her eyes. Please pray that the swellling will decrease quickly and provide her sufficient relief that we can turn the screws for 2 more weeks. Then we'll let it rest for a week before we start the upper jaw distraction. Still a long road to hoe.

Meg & Francis

Meg is another old friend with TCS we met at the CCA Retreat. Unfortunately, we forgot to get a shot of Francis! We love them both!

Jockey

Being in Louisville for 2 days re-whetted KT's appetite for horses. Now she wants to be a famous race jockey!

Partner

KT got together with another little gal, Sydney, who is going through the same jaw distraction process today. Syd used to live in Cedar City, so we have met her before, but they moved to California. Don't they look fashionable in their distractors? As you can see, KT is doing quite well - very little pain since we stopped turning the screws; of course, that is gaining us any progress! So back we go early Monday morning to have that top pin moved once again to get it off a molar nerve that caused the unbearable pain. We hope he gets it perfectly place this time, so we can get the maximum growth of the jaw.

KT had a few really good laughs today, and says it hurts when she smiles! The first was when I showed her how much her new dog, Oreo, is costing us, since she, too, needed surgery. What made her laugh was that the Vet's invoice named her "Oreo Whicker," and her cousine (Jeff's dog), "Taz Whicker." For some reason, that just set her off giggling for a couple of minutes! It was fun to see her in such good spirits.

We enjoyed our two days with Cher's Annual CCA Retreat (Children's Cranofacial Association) in Louisville, Kentucky. Met many old friends (Meg, Francis, the Crawfords), and made many new friends. We went to the Louisville Science Center, where we had lots of fun on Friday. Today (Saturday), we went and saw Cars 2, which was a pretty fun flick.

Thanks to everyone for their continued prayers. If KT rebounds quickly from Monday's revision surgery, we hope to travel to Michigan Friday to spend the holiday weekend with Cami and her family (KT's oldest sister).

Number 3

We just got called by Dr. G.  He was unable to secure a custom-made device from Germany in any less than 6 weeks, so he wants to go ahead and reposition the top pin again early Monday morning.  We asked about the idea he had brought up earlier of the "halo" device, and he said we could go that route, but as he'd considered it over the last couple of days, he decided we wouldn't be able to get the same amount of bone growth with it as with the normal device she now has on.  So he wants to try one more time to reposition the pin so as not to cause severe pain.  I don't know what to think.  I asked him why he thought he could find an area that would work when he has said how difficult it is to find any workable space in there.  He said that this time, he'd take more time to "peel things back" and look deeper to ensure he stays away from teeth and eyes.  Please give us some feedback!  We need some input here...  (send to whick@juno.com)

Treading Water

No word from Dr G for 2 days now on how we can get past this latest roadblock. We need to start making progress again! Time's a wastin'. Please pray he can find a solution ASAP. KT's doing ok, but not very active.

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Set-back

During Sunday evening's turning of the screws, the hardware came up against one of Katie's tooth nerves and caused her to hit the roof on the pain scale. She was frantic, and we didn't know what to do, so I called Dr. Gordon's cell phone directly. He said to back off the screws to where they were before we turned them tonight. That seemed to relieve her enough that we could get her settled down to sleep for the night. When we saw Dr. Gordon today, he said that KT was by far the most difficult distraction he's ever worked with, because of the uniqueness of her anatomy. So, he is calling Germany today to see if he can get a special set of hardware ordered that will allow us to continue the distraction; if it will take too long to get that custom-made stuff, he'll convert to a halo to finish out the lower distraction, even though that type of device is built to do the upper distraction, not the lower. He'd have to jimmy-rig it to make it work for this part of the process, but then it could transition to use in the next phase, or upper jaw distraction. He admitted today that he's having to make things up as he goes forward with her because of how little bone there is to anchor the distractors. We'd be pretty discouraged by now if it weren't for the dramatic increase in airway that we're seeing week to week.

We now have two other Utah families here - one doing the same distraction as we're doing, and another doing a bone marrow transplant. Keep praying for this little gal! There's still a long row to hoe. Thanks for all your support along the way.

Revision

This shows how the pin was moved on the left side in an effort to relieve the tremendous pain KT was experiencing for the first two weeks. It worked wonders! The Dr. believes that because she has no jaw joint (her jaw just "floats" in there), the movement of the distraction was pushing muscle, bone, and nerves, backwards into the skull and pinching it all; maybe even the occipital nerve, which is the nerve that causes migraine headaches. Thus, the left half of her face was hurting so bad all the time.

The only downside to this is that she'll have another scar, but Dr. Gordon says he can make that invisible once we finish with all the surgeries. To have KT feel like doing things and going places is so worth having to have undergone an extra surgery.  CLICK ON PHOTO TO ENLARGE IT.

Hogan

Katie got another chance at a therapy dog today - Hogan. And, if you cannot tell, that IS a smile on KT's face! That's about all she can manage right now, with the distraction pins in their new places. We had another good day today - went to the Cincinnati Museum. Very enjoyable, and she wasn't in pain until on the way home about 6 pm. Thanks to all for your prayers on her behalf. They are working!

Ice Cream & Butterflies

KT had a good day today - even tried ice cream, but couldn't swallow it. Her pain is pretty much under control, but she is dizzy. We are ratcheting down the narcotics on Dr's schedule. Saw a live butterfly conservatory this afternoon. She enjoyed it.

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Relief

The adjustment to Katie's distractors went well yesterday.  We had them give her a calming agent before wheeling her into the operating room, but it didn't help at all - she still clung to me for dear life while they put her to sleep.  However, the beauty of it all is that SHE SLEPT THROUGH THE NIGHT!  Not a whimper, nothing.  I could hardly believe it.  And this without hardly any medication, because since she didn't wake up, I didn't wake up to give her any.  So this is a big change, and definitely worth the effort to go through another surgery.  Dr. Gordon didn't do exactly what he had planned to do because the hardware he had wasn't long enough for KT; so instead of installing plates into her skull as the upper anchors, he merely moved the upper pins lower and more forward on her face.  But it did the trick.  They were just disturbing too much the temporal area, since her jaw joint is floating and there wasn't enough stability there to do the trick.  More pix coming.  Thanks for your prayers - it all worked to her benefit.

Modification

We're at the hospital again, to have the top pins removed and replaced with plates. Her left face is just too painful.

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Progress

This pretty much says it all. We are pleased with the progress; hopefully, the pain level will continue to decrease. CLICK IMAGE TO EXPAND FOR READABILITY.

Humor!

Though there is still plenty of pain to go around, things lightened up today in the Dr.'s office for her weekly check-up.  Katie wrote on her iPad:  "I guess I don't want you to punch Dr. Gordon in the face because he might "accidentally" make a mistake in my next surgery!"  I about busted up laughing!  She is quite the corker.  She also laughed (painfully) a couple of other times today - once, when she ready Dani Jensen's beautiful letter and those of her darling children (thanks!); once when she read Lyndsey's blog update; and once when we walked into the room after having left her alone while we ate, to find her with her feet buried inside the pillow case - her feet were cold! 

So, things are looking up a bit.  For now, we decided not to have the upper pins replaced by metal plates to try and reduce her pain because it appears that the pain is slowly reducing each day, just as her blessing promised.  There is some concern, though, that the occipital nerve in her cranium is being irritated, which may be causing her left-face pain, including pain in the rear of her skull.  If that worsens, we can still go back at any time to have that surgery done.

Butterfly

The Lovelesses sent this to me tonight, and it was just what I needed to consider as we watch KT go through this pain.  Thanks, Dave & Betty, for hitting it on the head!
http://whick.com/katie/AButterfly'sLesson(Rev)1.pps 

Bionic Woman!

This is VERY revealing. This x-ray was taken last Monday, after only 5 days of turning the screws, and you can already see the airway opening up! Remember that earlier picture that showed where her airway is completely collapsed unless the Dr. was tugging at her jaw so hard as to barely get it open? Well, now that airway is opening up due to the distraction, and we have a lot more movement yet to go. Progress! Despite the intense pain and the stress of all this, we are making progress! Another x-ray Monday will show any further increase.

I also thought you'd find her x-rays interesting anyway, due to the number of extra peripheralnia she brings to the world: trach, trach chain, hearing aid, distractors; and this doesn't even show her g-tube!

Jake

What could be better than the largest dog known to man, coming right to your doorstep? This is "Jake," a New Foundland therapy dog brought by today for the kids in the RD House to see. Katie did not want to leave the room, but I insisted, and took her down. When she got there, she was immediately enthralled, not only with Jake, but with another little therapy dog (whose name I failed to get), but who is a Shitzu, with almost the same coloring as Oreo, the dog Aunt Lynda and Uncle Jeff are training for KT's return. So this was a positive move.

We lost Katie's hearing aid for a couple of hours this morning, and we considered being frantic about it. But logic prevailed, and we knew it HAD to be in the room because we hadn't been anywhere! After two hours, it showed up in her suction machine bag. KT really enjoyed her bath this morning - she's only been able to take showers in the hospital, and it's no fun having to stand to shower. But relaxing in a tub? Now that's sheer ecstasy!

Original

You can't replace the original recipe! Everyone has been so kind to research and send meditation techniques to help KT deal with the pain, so I decided to try a few of them. For example, Ali's links had a "floating on a cloud" script that I tried on her night before last. No go! As soon as I started it, she vigorously signed, "No!" and started flapping her arms to indicate she wanted to "fly," Aunt Rachie's way! So, I had to go back to Rachael's script to get airborne, and then I smoothly transitioned to the cloud script - it blended pretty well, but there was no way I was going to get away without starting out with the box of pain being left on the ground as we floated away in a hot air balloon and watched it get smaller.

Dr. Gordon came in this morning to ask if we wanted to go through with the procedure he came up with to remove the top pins and replace them with solid plates in her skull to possibly reduce her pain. I asked if he'd ever done this before, and he said no. Pam and I had been discussing the option just a few minutes before, but at that moment, I got the impression to say no - let's take her home for the weekend and see if being outside the hospital on the same pain regimen will help her focus on other things and get through this. I was afraid we might be just trading one problem for another. So she's being discharged this afternoon, still in a lot of pain, and unsure she even wants to leave the hospital - there is definitely fear involved here.

Shortly after, another family who just went through this type of distraction came to talk to us. Their daughter, Carrie, is 18, and is under the knife right now getting cheekbones and eye orbitals after having just distracted. They were VERY helpful! They had the same issues as we're having, but have felt it was all very worthwhile. They showed us how much growth they got out of it. The nurse practitioner also showed me the x-ray they took Monday, after only 5 days of distraction, that clearly showed her airway opening up already! So all that was encouraging, and we feel good about this decision to bring her home and see how things go.

Rachael Wheeler, KT's cousin, is coming her from Columbus today or tomorrow with her 4 kids, so we'll go to the zoo that is just a few blocks away. That should be a good distraction, as KT loves little children AND animals! We'll let you know how it goes.

History

I found this old before and after shot from KTs original jaw distraction back in 2004. In reviewing this, it looks like we made progress with the downward length of the jaw, but didn't get the finishing touches that Dr. Gordon hopes to get by rotating the jaw upward to close the mouth. I sure hope he can accomplish what he's described. The process sure is hard, though.

Swift

The best shot we could get of the Taylor Swift Concert in Columbus, OH, last night. KT really enjoyed it up to the point she could no longer handle the pain. It was a good show, though!

Rough Night

We got KT back into her hospital bed about midnight-thirty after the TS Concert.  Her pain levels got pretty intense 3/4 of the way through the concert, so we came out to the car, and by the time we had her in the car she was just plain frantic.  She felt like she couldn't breathe, so we suctioned her, and she still signed "Call 911!," so we did an emergency trach change.  Even then, she grabbed my hands and placed them on her head, indicating she wanted a blessing, so I gave her one right then and there without oil.  It seemed to calm her down, and we got started on the 2-hour trip back to the hospital (the concert was in Columbus, and we're in Cincinnati). Mom sat with her in the back seat and held her hand the entire way home while we played Aunt Rache's balloon flight mediation over the car speakers.  KT tensed up with each bump in the road, and we weren't allowed to give her any more medication until 11:30 (we gave it early at 11:15 pm).

Despite the drama, we all feel it was still the right thing to do because it gave her something to work toward.  She loved the concert, but because of all the movement, she didn't sleep well all night (thus, neither did I).  But, it cleared out her lungs better than they've been since surgery!

We were going to be released today, but because of her pain levels through the night, they decided to keep her one more night - but they moved us to a different room that wasn't dedicated to kids with compromised airways.  We'll most definitely be discharged tomorrow (Thu) unless we decide to go with Dr. Gordon's suggestion that he do another 5-minute procedure to insert a plate above her top screws to give the lower expansion screws something more solid to work against, thus decreasing the pressure that seems to be causing all the pain.  He hasn't really explained it very well, and of course, KT is extremely contrary towards another surgery already.  But she is beginning to think it might be worth it, if she can get rid of these pain levels.

So, the saga continues.  Pam and I are wearing down a bit, just looking for some resolution to this constant tautness.  When KT's going through her severe pain bouts, she hangs onto our hands so tightly it hurts!  Thankfully, we're both here, though, and able to split the shifts.  Otherwise, it would never work.  It's very nice, too, to get good home-cooked meals provided at the Ronald McDonald House, and a nice place to stay for cheap.  They are a very wonderful charity!

Movie Debut for Katie

This is for you Katie. We all wanted to do something for you, without really knowing what, so we made you a movie. :) Hopefully it lifts your spirits a little!

Love,

Jami, James, Lyndsey, Addison, & Ella

Concert!

Motivation is a great thing. Yesterday, the Manager of Ronald McDonald House posted a note on a dry erase board that someone had donated REALLY GOOD seats to the Taylor Swift Concert Tuesday in Columbus, which is about 1.5 hours from us. So I called to see if KT thought she could be ready to be released from the hospital by today, Tues, so we could take her to this concert that she's always wanted to go to. She'd have to be up and walking, "everything" moving, showering, and pain level under control. She said "YES!" she could be ready. Magically, her pain level went way down for much of the day, and her attitude and effort have increased dramatically. There really is great mental value to the idea of having something to look forward to!

However, the doctors say she isn't ready to be released today, but they will give her a pass for the evening to go to the concert. So we're adjusting her meds such that she'll be able to make it to and from without major pain. The reason she can't be released yet is because they need more time to wean her off the heavy narcotics to more home-style medications, and they think it'll take two more days to accomplish that.

Needless to say, KT is very excited to get a break from the 4 walls of this room after almost a full week. She still has some pain behind her left eye, and I'm sure this little jaunt outside will be difficult for her, but she thinks it's worth it, and thankfully, the doctors are cooperating - I think they see the significance of the mental adjustment this carrot has created within her. Thanks for your prayers and fasting; keep on praying! There's still plenty of pain to go around...

Aunts & Uncles

The value of family in a situation like this cannot be overemphasized. Besides the obvious tie to parents and siblings, Katie has been greatly blessed by her aunts and uncles.

Rachael got through to her during a time of extreme pain last night over the phone by talking her through a hot air balloon flight, where her pain was left in a box on the ground - it was still there, but got smaller and smaller as they ascended. They saw beautiful things, and were eventually greeted by angels, and even greater Beings. Rachaels voice was so calm and smooth and tender, that I felt Katie's death grip on my hand slowly relax as she got fully into the closed-eye imagined trip in the balloon. It was so beautiful that I cried. She went right to sleep as the trip ended. THANK YOU, RACHE!!!

Later in the same night, Katie had another extreme pain episode, and I suddenly remembered that Jeff & Lynda had uploaded some new videos of Katie's dog, Oreo, which they are keeping for us until we get home at the end of the summer. So I pulled out the laptop, and we spent 40 minutes watching those cute dogs (Jeff's family have many!), playing and enjoying life. Katie was FULLY absorbed in it, and again, we got her mind off the pain. What a blessing - THANKS, JEFF & LYNDA, for knowing exactly how to help this little gal.

We're not quite sure why the pain level is still so high at the 4-day, 96-hour point since surgery. It should be settling down, but is not, so the pain team today is trying to come up with a better solution. Her stomach hurts with all the meds she's getting, so that complicates things. Her Mom gave her a shower yesterday, and today, we've made her sit in a chair, and are going to have her take a short walk twice. We've got to get her out of the hospital so she can start enjoying other things and not sit there rotting in the bed. For instance, today at the Ronald McDonald House, they have therapy dogs coming at 2 pm - just perfect for KT, but she's not her to enjoy them! So please pray specifically that she can get the pain under control and be released from the hospital to enjoy life. We depend on your prayers! We're getting worn down in our old age from this all-night stuff...

iPad

 
Funny story. This morning at 5 am, as I was asleep on the chair next to Katie, I suddenly wake up to this robotic voice saying, "I need to go to the bathroom!" It was from Katie's iPad, using the text-to-speech app on her iPad, which you see sitting on her lap here. She won that, btw, as Student of the Year at her middle school the week before we came out here!

Scope

These two pictures really tell the story of why we're having to go through these terrible surgeries with Katie. The otolaryngologist here, Dr. K Johnson,gave us photographic evidence to help us understand better than we've even understood in the past. The top photo is looking down her airway once you get past the obstructions - it looks very good, and is wide open. (You can even see the trach stoma - the white plastic). However, take a look at the 2nd shot. On you or I, this shot would be wide open, showing the voicebox, which you can barely start to see the base of in Katie. But this shot was taken with the Dr. pulling Katie's jaw outward as hard as he could, and yet, this is all the opening he could get. As soon as he let the jaw go into it's natural place, this small opening completely collapses - they can't even get a microspcopic probe through there without pulling her jaw forward because the whole structure closes off completely! So, the lower jaw distraction (the one we're dealing with right now), will make the opening look like the picture, which is a marked improvement, but still not enough. The upper jaw distraction, which tentatively happens 6 July, will further increase that opening to more what yours and my openings look like. She had a much better night last night, but is on a LOT of pain meds. She still gets very uncomfortable between doses, but she has started showing interest in computer games, TV movies, etc., so things are improving. I actually got 4 hours of sleep last night!

Punch!

At least in this picture, her eyes are open! But you can see that she's more swollen. Last night was pretty rough again - her pain levels have not been decreased much, so when she's awake, she's absolutely miserable. We're just hitting the 48 hour mark since surgery, so the Drs. all say the downward pain trend should now kick in. Dr. Cook, who I met just this morning, said that due to her unusual anatomy, Dr. Gordon had to cut the jaw bone lower than normal, which must be adding to the pain. Anyway, they just put her on Toradol this morning, which is the miracle medication that helped me so much when I had my amputation, so I'm hoping it does the same for her. We're hoping she'll start feeling better today. We certainly will not take her home today, though - too much pain still. It's hard when she gets to the end of her rope, as she really gets agitated. They finally started giving her a dose of Valium between pain doses, to keep her calmer. She needs to learn some focus techniques like Ali used during childbirth (and I assume you other girls did too). So if anyone can call her today and talk her through some of those techniques, it might be helpful. Mom and I haven't been too successful at talking her into trying that idea. Here's what she wrote on her iPad this morning: "I want to punch Dr. Gordon in the face!"

Please continue the prayers - we have a long ways to go.

Banjo

The Banjo Man came and sang to Katie last night. He had some good stories to go along with his songs, and he managed to get KT's attention for a little while, which was good. He's a volunteer, and may come back to loan her a guitar to play around with as a diversion.

eCard

http://www.cincinnatichildrens.org/ecard.htm?WT.svl=r


Room#B510 - looks like we'll be here at least thru tomorrow.

Facebook

You can comment on the blog if u want, but KT doesn't see those and doesn't necessarily want me to read them to her. But she does go directly to her phone to check for texts and Facebook notes every time she wakes up, so blast her with those. Still having tough time with pain, so continued prayers much needed.

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Screws

The nurse turned the screws for the first time at 18:45 EDT tonight, which starts the expansion process. You can see the wrench used; each side gets 2 full 360 degree turns twice a day for now. I'm sure he said we'll end up doing it 3 times a day once we're out of the hospital tomorrow. The overall concept is called osteogenesis, which means, "bone creation." The cut in each jaw bone is separated a tiny bit with each turn, causing the body to generate new bone to fill in the gap. Since KT has no real jaw joint, he says the expansion will first push the upper pieces to the rear until they hit "ground" at her skull. Once that happens, the lower pieces will begin to extend pretty rapidly. We're looking for 40 mm of extension (4 cm or 1.6").  KT seemed okay with the turning - up tight and apprehensive, but not too painful.

Cards

...can Be sent to Katie at:

Ronald McDonald House Room 81
350 Erkenbrecher Ave
Cincinnati, OH 45229

Please no flowers or gifts; we have limited space. Thanks!

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Pins

This shows you how her pins are located. We'll start turning the screws to expand her jaw tomorrow. She's still pretty deep asleep, but when she does come to for a few seconds at a time, she says she's still in pain. We're moving to a regular room now. She's pretty miserable at the moment. She is actually much less swollen in the face than she was last time, 7 years ago.

3D Skull Model

In Recovery

She awoke for a moment and said she was in # 10th pain, so they gave her some Fentanol, and she went back to sleep. Dr Gordon said all event very well - no problems.

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She's out!

Headed for recovery...

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In Surgery

She got real agitated as the guerney was rolled down the hall, saying she didn't want to go to sleep, and clinging to me hard.  They let us stay with her until she was asleep.  This is the hardest part of these surgeries - it breaks my heart because she gets so fearful.  I understand the feelings well, now.  As they rolled ne into the OR to amputate my leg, I remember well the overwhelming urge to jump off the table and RUN!  I had to pray extra hard for calmness, so I tried to whisper into KT's head to pray for peace, and I prayed aloud for her.  Next time, we'll ensure they give her some Versed or something to settle her down before they roll her out.

Attached is a shot of the 3D model of her skull.  You can see clearly the need, as only her back two molars meet.  She has adapted so incredibly - to function as well as she does with these obstacles.  That she can even eat, speak, and breathe is amazing.  She has done so well, everyone, including herself, has become convinced all is well.  But these surgeries will make significant improvements towards her independent adult life.  Hard as it is...

We're here

KT seems surprisingly calm this morning. I gave her a priesthood blessing last night after I beat her at a rousing game of Pac-Man! There will be more doctors in that room this morning than just Dr Gordon and his hospital affiliates - Master Physicians from Heaven will be assisting, of that we were assured. KT was also given an extra measure of healing power within her own body so she can bounce back from the strain of the surgery. This first one is the lower jaw distraction, the easier of the two. Here we go, ready or not...

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