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Sunday, October 30, 2011

Count

To set the record straight, this last surgery was #10 for the summer.  Here is a recap (an average of two a month for five months):

1. 1 June
2. 15 June
3. 27 June
4. 20 July
5. 27 July
6. 18 Aug
7. 5 Sep
8. 14 Sep
9. 6 Oct
10. 26 Oct

Let's call it quits for now, okay?

Pirate

The local Catholic Youth Group came by today to do a Halloween trick-or-treat for the kids, so Katie felt well enough for an hour to get dressed up in her pirate costume and go downstairs to listen to the songs and collect some of the prizes they offered the kids. It was good to see her out and about a bit. As you can see, she's still looking a little rough - like a pirate that was in a battle (but you should see the "other guy!"). She didn't last long, though, and is now resting in the tub.

I think we've turned the corner, and she's on the road to full recovery. We just need to be really careful with her and make sure she gets plenty of rest, nutrition, and keep on her medicine schedule. The swelling in her neck has gone down enough that we need to shorten the trach chain, so there is some obvious improvement. Plus, you can now see a sliver of an eye on the right side!

We didn't make it to church today to say goodbye to the good people in the Cincinnati Ward, who have treated us so well during our long stay here. It's been wonderful to have a built-in, ready-made church family for these 5 long months. They've been just great!
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Dodging the Bullet

Well, thanks to so many prayers, KT managed to "dodge the bullet."  Because she wouldn't let the Drs. touch the cyst on the side of her face last night that had developed due to infection, they sent us home for the night with a stronger antibiotic - clentimycine (sp?), and told us to come in the morning so they could lance it.  At 4:30 a.m., KT awoke me, very scared, and told me the cyst was getting bigger and that we'd better go back in.  I looked at it, and sure enough, it was twice the size it had been!  I'm kind of a wuss when it comes to medical issues, so I awoke Pam to show and tell her.  When she tried to move KT's hair out of the way, one of the strands that had stuck on the sore caused the entire thing to break open, and it just started oozing - completely draining!  It was great, because it released all the pressure.  So we decided to just wait to have it be seen later in the morning. 
This morning, it looks VERY good!  The Dr. saw it and said to continue on the harder antibiotic and do warm compresses 4 times a day, and that it will be just fine.  So...to KT's delight, no anesthesia, no operating room, no knives, no NUTHIN'!!!  She is one happy camper this morning.

It was a very stressful 15 hours, though, for all of us.  THANK YOU FOR YOUR PRAYERS - we KNOW they made a difference and that the Lord is watching over our little KT.

Saturday, October 29, 2011

Admitted

KT was devastated when the ER Dr.just told her she'd have to stay in the hospital overnight to have the abcess that's developed on the right side of her face surgically cleaned out. We were supposed to be done with hospitals! Pray this will go quickly and be final!

Fire & Ice

The RM House gave us some tickets to Disney on Ice, so KT enjoyed that this afternoon.  Shortly after, she started with a fever, and we noticed a cyst developing on the right side of her face.  Called Dr Gordon and he said to get her to the ER so they could get her on stronger antibiotics.  He says it's not uncommon, since they have to go through the mouth to inject the bone and fat, and that hopefully the stronger antibiotic will take care it, but there remains the possibility that he'll have to go in and surgically wash it out.

More prayers are in order.  We're in the ER now.

Friday, October 28, 2011

Leaving Hospital

Katie's getting dressed right now to go back to the Ronald McDonald House.  She's still very swollen, so much so that I'm not going to post a picture just yet.  But her pain is well under control, and she's anxious to get into the tub!  Her right leg hurts quite a bit to walk on - they took the fat from her thigh that was injected into her face.  We didn't expect that to bother her so much, but I do remember when they took bone from my hip to graft into my leg, that site did hurt for quite awhile.

She's excited about all the Halloween festivities planned this weekend at the RMH, so it's good that she's getting out of the hospital this quickly.  Pam isn't feeling too good this morning, so we need to let her get some extra rest to stay well.

Thanks again for your prayers.  We'll post a picture later today once we get her cleaned up.

Wednesday, October 26, 2011

Comfortable

Katie is resting comfortably tonight.  The surgery was a success - she was in the OR from 9:15 a.m. to 1 p.m., so it definitely took some time.  She is so swollen in the face that you wouldn't recognize her, so we're going to spare you the graphic view until the swelling goes down some. 

We know she's doing well because she said she was hungry while still in the recovery room!  That's NEVER happened before!  They have her on a PCA (Patient Controlled Anesthesia) pump, where she has total control of how much pain killer to receive.  It allows for a small dose every 7 minutes, and it makes her extremely sleepy.

Pam has gone back to the RM House to get a good night's sleep, and I've got the night shift here at the hospital.  We might not have to be here longer than one night, but I think more realistically, we'll be in here for 2. 

Thanks for your prayers - I honestly believe they made a difference, and that the recovery here will be quick.  She has a more distinct chin, filling in of her temple clefts, another layer of cheekbone, and revision of the pin scars to make them less noticeable.  So Dr G done good!

Recovery

She's out of surgery, in recovery; very swollen and in pain even though this one wasn't supposed to be extremely painful.

Doctor & Patient

This shot was taken two days ago during the final pre-op meeting with Dr. Gordon, the brains and hands behind all of Katie's surgeries over the last several months. The discussion was good, as he helped us understand why we'd lost some of the gained airway. He drew some pictures to explain the unique anatomy of Katie's face, showing us some of the "surprises" he encountered during surgery - spots below her eyes where most Treacher Collins Syndrome at least have some bone, but Katie had none. Thus, he was not able to do the textbook style cuts to create what the extension we were looking for. He's really had to be creative with her, and says that her case will become a basis for doctors to build upon as they learn more about how to deal with similar cases.

We like Dr. Gordon a lot, because he really cares. He spoke of some of the dangers involved with all that he's done, and he has taken extreme care to keep her vision safe during it all. He spent almost an entire hour with us on Monday, which I'm certain was more than was scheduled. We appreciate his efforts to explain it all to us in layman's terms.

We are now sitting in the hospital, awaiting her final surgery of this extended summer. Today she'll get another layer of cheekbones, filling in of the clefts in her temple region, extend her chin just a bit, and revise the scars created by the jaw distraction pins. Then we're to let everything alone for a year to allow mostly the upper jaw to solidify before anything else can be done. He says her lower jaw is plenty hard already, but that upper jaw started with such poor bone that it is still a bit loosey-goosey and needs time.

He gave us the option to do more with her eyes and nose during this surgery, but after talking about it, we all came to the conclusion that those things would need to be redone again at the time we do the next jaw distraction, so why do it twice? Our goal is to just finish things up and get us home and back to a normal life, so that's what we're going to do.

Thank you all again for your prayers in her and our behalf. She's only supposed to be in the hospital overnight this time if all goes well; we'll let things heal for a week and then head for home on Thursday, 3 Nov, arriving Sun, 6 Nov. She is VERY excited to get back to school and have her own bed, her friends, and her dog. (Anyone know how we can get her dog trained so we don't have the stress of a pooping dog around the house??)

I'll update this blog again once she comes out of surgery, or at least by tomorrow.
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Saturday, October 22, 2011

Dad's Back

I made it back to Cincinnati during the wee hours of the morning Saturday. Pam and Katie seem fine. This shot was taken a couple of days ago when the gal came to the Ronald McDonald House to do braids for any of the kids who wanted one. Doesn't Katie look good? She can't close her mouth anymore, which is too bad, and her teeth don't meet, which is too bad. But at least we have some airway left open! So we must count our blessings.

We're still not exactly sure what we're going to shoot for during the last surgery coming up on Wednesday. We do know he's going to release the clefting in her temples, and add another layer of cheek bone, plus some chin bone. If we can do anything to help the mouth and teeth close together better, I think that would be good, but I'm not sure that's possible without more hardware, and we can't stay around any longer to have hardware removed. This needs to be a "walk-away" kind of surgery, where once she has had a few days to recover, we can just leave. I need to be back to work by Monday, 7 Nov.

Thanks to everyone for the letters, packages, gifts, prayers, fasting and love! It's all meant a lot to all of us. Please don't send anything via mail that won't arrive by Wed, 2 Nov, as we plan on heading for home NLT Thu, 3 Nov in the a.m.

Monday (day after tomorrow) is Pam's birthday, so we're going to find a great way to celebrate her life! She's been the main trooper in all this, besides Katie, and she deserves a day of joy centered on her.

We send our love and greetings to all. - Glenn
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Tuesday, October 18, 2011

Miraculous Renewal!

It's back!!! GOOD NEWS!!!!!.........The airway is BACK!!!!!! Not a large one, only 7mm, but it’s an airway!!! It appears that its disappearance last week was due to swelling, so we are VERY relieved! It was as large as 17mm at one time, so it's less than half what it was, but it's still there. That miracle we were looking for is still "in the works" after all. THANKS for your prayers.

[From Pam] We walked into the appointment Monday, talked to the nurse, then Dr. Gordon and Dawn came in. The first thing out of Dawns mouth was, “How many people follow Katie’s blog? We have had so many calls asking “What happened to Katie’s airway?” So there you have it, power in the internet, getting the message to all those who love Katie and then in turn they contact the Dr. they trust to find out what happened. I figure it’s the people who’s children have seen him and depend on him to help their kids decannulate.

Dr. Gordon thinks the airway was swollen and is now getting back to normal. He also believes he can make the airway stable by doing a second lower jaw distraction in a year or so, with a plated upper jaw distraction after the bone heals well, in, yes, about a year.

[Glenn] We will go ahead with the final surgery on 26 Oct (is that next week already???). Dr G will work on the clefting in her temples, and add some chin, which might help sustain the airway even more than it is now. Then, we hope to come home by about 4 November. Is Katie ever excited to get back to a "normal" life!
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Saturday, October 15, 2011

Comfort


Pam and Katie are in Room 44 finally tonight.  So the address is:

c/o Ronald McDonald House
350 Erkenbrecher Ave, Room 44
Cincinnati, Ohio  45229

They are VERY happy to be in that much more comfortable place.  Thanks for your prayers!  We’re still trying to decide whether or not to go forward with the Oct 26th surgery, but I think we will.  Love to all,

-          Glenn

McD's

Pam and Katie finally made it into the Ronald McDonald's House in Cincy.  Yeah!  MUCH more comfortable.

Wednesday, October 12, 2011

Setback

What is going on? Katie is having trouble with choking, and as you can see from the x-ray taken yesterday, her new airway is gone! We are distraught, trying to understand why all that incredible airway has disappeared. Please pray for her - we've got to get some answers and save that airway. It all may have been too much, too fast. We've had so much faith and hope, and need to regain it after seeing this picture. Pam and I are going to fast from Thursday lunch to Friday lunch to see if we can get some increased understanding of where to go from here. We can't have the entire summer's efforts go up in smoke! Please pray with us, that everyone involved can be inspired to know how to proceed. And if you'd like to join us in our fast, please do.

The outer cosmetic changes are a nice side benefit, but our whole purpose was to establish a permanent airway. Dear Lord, help us get that airway back, please!

All our love,

- Glenn, Pam and Katie
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Thursday, October 6, 2011

Surgery #9

(Written by Ali):

Hi everyone,

Today Katie’s surgery went well.  We got to the hospital about noon, and went back immediately to pre-op.  There we waited about an hour and ½ until they came to get her about 2pm.  Dr Gordon came in and said hello, Mom went back with Katie.  They did not give her Versed, which is the calming drug they usually give her.  Mom said it a few times that she usually gets that, but either they didn’t realize she was trying to tell them to order some, or understood that she had been doing well so they didn’t give it to her.  Katie’s OR today didn’t have an induction room, so Mom was not able to stay with her while they had her breathe the gas to put her to sleep.  That was not good for Katie, and she had a difficult time as Mom left.  Later Katie told me the gas wasn’t working fast, so they had her take a deep breath of it.  To her dismay.

It was only 35-40 mins until Dr Gordon met with us to tell us it went great, her bone is solid and he is really pleased with everything.  (We recorded that convo that I’m sure mom will share more of later).  Then Mom went back 10 minutes later to recovery and we left the hospital about 4:30 pm.  Immediately Mom ran to the cafeteria to get Katie mashed potatoes and gravy.  She ate a lot of it in the car on our way to the store.  She didn’t lke the gravy because it was too salty.  But I bought a few donuts and she ate a good quarter of a chocolate cake donut.  She scraped off the frosting of most of it, but she was totally lovin it.

So things went well, she says it feels weird.  But she is totally stoked to be able to eat now.  Grateful for a quick surgery day in and out.  We are not in the RMH yet, we stop by each day to see if any update…maybe tomorrow.

We are going to watch Hocus Pocus now.  Goodnight! Love you All

Ali, Mom, Kate, Wade

Wednesday, October 5, 2011

Back in Cincinnati

Pam, Katie, Ali & Wade made it back to Cincinnati late tonight (Wednesday).  She has surgery tomorrow morning (Thursday) to get her mouth opened up after having been wired shut for 3 weeks.  She is STARVING, and can't wait to eat something by mouth!  I'll head out to Ohio on the 21st of this month to be there for her final big surgery on the 26th (and to help celebrate my dear wife's ____th birthday on the 24th)!

The memorial service for Pam's Dad was very nice and uplifting.  It was nice to see so many family members, and to reminisce about Boyce Stone's great life of service. 

Please continue to pray, as this has begun to wear on us all.  Thanks!