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Saturday, September 24, 2011

Grandpa's Gone

Pam's Dad died today.  So, Pam, Katie, Ali & Wade will jump back in the car early next week to head back West.  The funeral will likely be Saturday.  The only trouble is that Katie will have to postpone the surgery to open up her mouth, since it was scheduled for Thursday! 

We love Grandpa, and it'll be nice to celebrate his life all together.

Wednesday, September 21, 2011

Tongue Aerobics

This surgery journey has created some very interesting situations, but none as interesting as the TWO caused by the latest surgery, a week ago today.

1. After Katie came out of surgery, she realized her tongue was STUCK between her teeth! And, since her mouth was wired shut, she couldn't get it out. It didn't hurt, but it certainly kept her from speaking. So, one of the residents came by and tried to pry her teeth open enough from the side to allow her to get her tongue out. He was partially successful, but couldn't get it all the way freed. Katie kept working on it herself that night, and was finally able to give her tongue complete liberty to move inside her mouth!

2. Last night, the ring that goes around her back molar to anchor her braces, came loose insider her mouth. What do you do with a ring inside, that you can't spit out because your mouth is wired shut? Isn't that the oddest predicament you've ever heard of?

Pam called Dr. Gordon, and he said to have her swallow it. But Katie was afraid to do that, because she has had issues in the past with choking. We called her orthodontist in Utah, and he said it wouldn't be the first time one of those was swallowed, but he couldn't feel comfortable recommending it.

In the end, Katie decided to hold it in her mouth all night and wait until they could see the Dr. in the morning. By morning, she was ready to get rid of that blasted ring! They went to the hospital, but Dr. G was in surgery, so they saw one of the Residents. She said that they should definitely NOT cut the wire to open her mouth, as that would indeed undo much of the progress made. So she told Katie she'd have to keep it in her mouth until surgery next Thursday (8 days away). Katie wasn't at all happy with that determination.

She went home and started doing tongue aerobics and finally managed to work the ring out the side of her mouth through a narrow space between a couple of teeth! Imagine her relief! So it all worked out in the end. I'll bet no one could even come up with such an unusual situation - more bizarre than fiction!

The swelling continues to subside,and Katie's new face is looking wonderful. Here she is with her little nephew, Wade. She LOVES having him around!
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Monday, September 19, 2011

New You!

We saw Dr. Gordon today. His whole staff began to "oooh" and "aaaah" at Katie as we entered the hall with the check-in nurse. The Dr., Dawn and Stacey, just walked into the room with us and the nurse eventually left because no way could she check us in with all the admiration going on.
Dr. Gordon says Katie has made the greatest transformation of any patient he has ever worked on. Katie's swelling is down today. She slept well last night, and her pain is improving. I attached the sweetest picture of Katie and Wade, Ali in the background. Katie's smile is the sweetest EVER!!!
You'll love it. Glenn you gotta post it on the Blog. Dawn thought Dr.
Gordon was making her face look like mine. She thought there was a strong family resemblance. So fun to have her say that. Love it!!!
He is not worried about the teeth. He said we will have to do that work later with the orthodontist. So I'm going to stop stressing about it.
He will do other work later to make the teeth go over the outside of the bottom teeth and if she looses teeth we will replace them with implants.
Also he revealed to us he used a hormone in the bone in her face called BMP2. It should help it to solidify and not reabsorb. She goes back into the operating room on Thursday Sept 29th to remove the wire. Anyway, it's dinner time and we are starving, no other meal has been served so we are Hungry!!! Talk later. Love Pam/MOM/Grandma

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Saturday, September 17, 2011

Ukelele


Ali reporting from full day #2 in the hospital.  It was a pretty good one!  I arrived at about 9:30am, and Mom hung around for 1 hour.  The high points of the day were many.  Mom came back around lunch time with a special treat!  Katie received a package from Alpena Michiganites, namely Camilly and Co.  My favorite thing was Cade’s green truck that he chose to send Katie.  Love that. 



Katie started normal feedings, instead of pedialite..so this is great.  She is still suffering from the extreme trots (sorry, Katie.  Your life is on display for us right now.  Sorry.)  So we are hoping to get that cleared up before she leaves the hospital. 



Good news: IV wouldn’t flush so THEY JUST TOOK IT OUT!  Hallelujah.  Katie hates that thing.  Bad news: They had to draw a blood sample today and since her IV came out and wouldn’t work, they had to come and stick her.  FOUR DIFFERENT PEOPLE!!!  Shoot.  She hates (understatement) that.  Her veins are small and not easy to see, so the poor gal got poked in several different spots (and digged at! Ew) before they FINALLY found a vein that would pop up.  Guess where it was?  On the knuckle of her index finger on her left hand!  Ouch.  And ouch it hurt me too, because she was holding my hands and SQUEEZING THE LIFE out of them.  First she squoze (I know. Not a word.) my forearm and that really didn’t hurt.  In fact, she was PINCHING my arm as the pain got worse and I giggled about that.  Then she went to my left hand and that really hurt because my thick ring was in the way.  Well, hopefully it helped her.  She was NOT happy about that part of the day.



But, luckily RIGHT after that the music therapist came in.  I liked her!  She brought her guitar and asked Katie if she wanted to get the ukulele.  Katie said YES.  And so together they practiced chords then played a Taylor Swift song, Bruno Mars, and Rascall Flatts.  Katie sure is quick with that!  I was very impressed.  And Wade loved it too, he was talking through the whole thing.  It was such a lovely time for Katie, I know she really enjoyed it.



After that my little ducklings took a long nap (even Wade. He is the non-sleeper here!).  Then Katie and I played some air hockey on her ipad after cleaning her mouth. 



She is at the peak of swelling today, it seems. Her left side is worse than the right and seems to be bruising around her eyes.  Her lips are really dry, so we try to keep them moisturized with aquaphor.  She hates that, too.  I asked her if she had looked in the mirror yet, and she said yes.  The only thing I could get out of her as far as how she is feeling emotionally is that she is glad to have the RED device off.  I AM TOO.  That blasted thing.



We talked to Lyndsey on the phone right before Wade and I left.  Katie even got up to walk me and Wade out and take a stroll around the unit.  That is really good.  Next goal is to get her showered and wash her hair.  They brought in this shower cap that you warm up in the microwave and put it on and rub it around and it’s supposed to clean her hair.  I have no idea how that works and my curiosity was peaked to the max when she told me.  I doubt it would do much for Katie’s beautiful, thick hair though.



Katie looks really different.  It is an adjustment for me… I find myself looking at her and thinking about her other face and how she’s like a different person.  Then I look at her body and its’ the same and I know she is KATIE still, but she really is different.  I hope she adjusts well!  I mean really she got a NEW FACE.  Who does that happen to????  She still has those eyebrows…oh those eyebrows.  Her expression says it all when those are lifted. 



I would like to share a very special moment for me that happened yesterday.  Katie had fallen asleep and I was sitting next to the bed.  Her mouth pools liquid/saliva and I didn’t want it to drip since it’s still bloody and we had changed her and cleaned her up, so I tried to gently suction that.  She opened her eyes and looked at me and I apologetically looked at her and whispered “sorry!!!!” as I really did not want to disturb her.  Our faces were 5 inches apart and she brought her hand up to my cheek and started rubbing.  At first I said “what?” thinking do I have something on my face, does she want me to back away, is she trying to tell me something?  Then she just kept rubbing and looked right in my eyes and I realized she was just stroking my face.  It took me aback.  I looked at her and gave her a kiss on the forehead and said I love you, Kate.  She signed I love you back.  It was a really tender moment for me.  Expressing feelings honestly and openly is pretty important to me, and getting those emotions from other people is very important.  Katie is still learning to express feelings, so this was a momentous moment for me.  It makes me cry a little telling you.  I sure am grateful for this time to come closer to Katie and Mom.



Well, we are hopeful for less swelling, less diarrhea, and no need for strong drugs tomorrow.  It will be really great for her to be back at the RMH and we can hang out here.  Things are going well, thanks for your prayers and love!



Love to all,

Ali


Thursday, September 15, 2011

The Day After

From Pam:

She's more swollen today, but I believe her pain level has gone down a bit. Her stomach is doing better, she's on half pedialyte, half ensure. So that's a step in the right direction. Her stomach hasn't hurt at all. She has ask several times today what the doctor did to her, but she doesn't want to see herself in the mirror yet. She knows that she is really swollen. I think she's looking terrific!

She received 3 helium balloons from her sisters. Katie was delighted they thought of her. The balloons were tied to a vase with two smiling flowers made of pile fabric and a bear hugging the vase. She was just thrilled. It definitely lifted her spirits. It also helps to have Wade around. She forgets all her troubles when she is holding him.

The doctors are saying she is not swelling as much as other patients. So we have her packed in ice and hope that will help even more. Ice seemed to help a great deal with the LeFort procedure. She may get to come home tomorrow if she continues to hold her feeds and move away from the IV meds. So we'll see. I'm taking it one day at a time and I don't want to bring her back to the Ronald McDonald House until pain is manageable and she is ready. Thanks for your prayers.

I really feel that putting bone in her face was inspiration. I have worried over the lack of bone in her face. I've wondered how he would ever bring her jaw together with broken apart, spaced out teeth in her upper jaw. I believe Dr. Gordon's choice to put bone in her mouth was the Lord inspiring him how to solve this problem. It wasn't one of his options before the surgery started. So, I will say it once again, the LORD is in CHARGE and helping us every step of the way!

Thanks for the call Cami, Katie loved speaking with each of the kids, I guess I should say listening to each of the kids. Katie isn't speaking at all! I send my love and thanks, love Pam/MOM/Grandma
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Wednesday, September 14, 2011

Early Cheekbones

Dr. Gordon surprised us again today. We thought today was to be a pretty easy surgery (#8 since 1 June), just to wire her mouth shut and bring that new upper jaw down for her teeth to meet. Well, he got in there and because her upper jaw still had so little bone, and the bone it did have was not good quality, he called out to the waiting room to ask Pam for permission to do some bone grafting on her upper jaw. He said it would take far too long to create enough good bone up there to stabilize things adequately. Pam gave her approval, and boy, did he go to work! Not only did he give her bone to boost that upper jaw, but also placed the first layer of cheekbone AND worked on her nose!

Doesn't she look great?! I mean, you've got to get past the blood, but you can definitely see her face coming together. It's just beautiful to me. The bad thing was that I had promised her I'd be there for the "BIG" surgery, thinking it was scheduled for 26 October. Today's was supposed to be relatively minor. Now, she's recovering without me there to hold her hand, sing into her head, and just hug and pray with her. It was hard on both of us tonight as she called and I said a prayer with her over the phone. I'm so glad Pam, Ali and Wade are there. She needs family! She always wants to hear the voices of family members that aren't there - right after surgery is a tough time for her.

The swelling will get pretty great over the next few days before it starts coming down again, so I'm glad to get this early shot that shows what she'll look like. Our TCS friend, Carrie, had these cheekbones implanted earlier this summer, so we kind of know what to expect. Carrie, who is 18, said that the recovery pain was not nearly as bad with this part of the process as it was with the jaw distraction, so I'm hoping that'll be the case with Katie, too.

When I talked to Katie tonight, about two hours ago, she couldn't really talk. But when I mentioned that it must be nice to be rid of the R.E.D. device, she nodded her agreement to Mom, who relayed that response to me. If I'm remembering right, she's been wearing that thing since July 20th, so almost a full two months! You can see in the picture where the R.E.D. injured the temple area; those should heal completely, and the hair follicles will regenerate, the Dr. assures us.

I'm excited for how great she's looking! Now, let's all pray that her recovery goes well, that no infection sets in, and that her pain is minimized as much as possible. And that Katie's normal, jovial, full -of-life self will quickly return to her spirit. She has been through so much. I know she's going to be vey pleased with the end result, but what a row to hoe to get get there! Thanks for your faith and prayers.
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Saturday, September 10, 2011

Ronald McDonald House

Ronald McDonald House Room 68
350 Erkenbrecher Ave
Cincinnati, OH 45229

They're very happy to be back in the much more comfortable RMH.  Looks like they'll be there until early November, so feel free to send Katie any letters at the above address, or by email at katiewhicker@gmail.com or find her on Facebook.  She had a rough night last night and called me at 11:30 her time.  It was good to talk to her, and by the time we hung up she was feeling better.  I hope she slept well after that.

Wednesday, Pam thinks they are going to remove the R.E.D. and put in an Archbar, "any one of various types of wires, bars, or splints that conform to the arch of the teeth and are used in the treatment of fractures of the jaw."  They have a pre-op appointment on Monday to get the full details, as this is a different direction than what we had at first understood.  I'll be anxious to hear the full plan.

Monday, September 5, 2011

Surgery #7

Today was a very long day for Katie, Pam and Ali. They arrived at the hospital at 6:30 a.m. on a holiday, so the normal routine at the same-day surgery center was not in place. Everything took longer, but we are glad Dr. G was willing to come in on a day off to make things right for little KT. This photo shows how he got the R.E.D. back up in place, pulled pretty hard on her lower jaw to get it back up where it needs to be, and I'm not sure what else he did.

He said she had definitely lost some of the gained airway due to the falling of the device, but that he will get it back. It will be important for them to be right there in Cincinnati throughout the duration so that he can handle any unforeseen problems immediately. We cannot afford to let ANY of the airway expansion be lost after the long, hard and painful struggle it has been to gain it in the first place!

Katie awoke from surgery in extreme pain; that is always so hard to see, and Pam is SO strong. She can handle that so much better than I can. I just get impatient and ask the nurses why they can't keep her pain under control - I know there are medications that will do the job, so why do we have to wait until she's crying out in such pain to give it to her? Anyway, I was flying this morning with a student when she called and wanted to talk to her Daddy, but I finally reached her 10 minutes later, and gave her a blessing over the phone. It seemed to help calm her.

They waited around in the hospital until about 7 pm tonight, their time, so it was more than a 12-hour day. They're grateful to be back at the hotel, now, so they can rest. I think having little nephew Wade around at the hosptial was a good diversion for her - she loves little kids so much!

Hopefully, everything will start to heal again now and she can get into the Ronald McDonald House and work on her school assignments. Dr. G wanted to keep the original 14 September date to get in there a do a little more, but I'm not sure what. The big surgery is still set for October 26th.
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Sunday, September 4, 2011

Early Surgery

I just got the word she'll be reporting in at 0630 for an 0800 EDT surgery, which is 6 a.m. Utah time.  So wake up praying!!

In Ohio

They're back in Ohio safely.  Tomorrow KT goes under anethesia for the 7th time in 3 months, this time to fix the drooping halo headgear.  I'm certain Dr G will take the opp to do more than just that, as we were 1/4" short of the goal in getting her upper jaw where it needed to be.

They're on a waiting list to get back into the Ronald McDonald House, so please pray that will happen soon - it is such a nicer environment, includes meals, and is cheaper.

Thanks to daughter Ali for helping Pam drive, and for being there all month as a support!

Friday, September 2, 2011

600 miles to go

Pam, KT, and older sister Ali with her new infant, made it as far as Independence, MO, tonight safely.  KT's RED device keeps slipping further down her head, causing discomfort, so we're glad she's got an OR appointment in Cincinnati on Monday to correct it.  So sad that they had to go all the way back there to get this relatively simple adjustment made, but no one here dared touch it. 

Tomorrow they'll go the last 600 miles.  So glad I got new tires, front brakes, oil change and beefed up the shocks before they left.  That makes me feel more secure that they'll be safe.  Thanks to G'ma & G'pa for getting Ali & Wade to the rendezvous point yesterday to make that first day's travel more efficient.  And to Jeff & Lynda for taking the dog, Oreo, back for now!  I certainly don't have time to take care of a dog while I'm all alone here, even though I do kinda like the little gal.