Dr. Matthews

We've just finished our visit with Dr. David C. Matthews in Charlotte, NC.  Believe it or not, KT came away from his office PAIN - FREE!!!  Oh, my goodness, skeptic that I am, I did not have much hope that he'd be able to take care of her pain in ONE visit.  He says the drug-free treatment will last a minimum of 48 hours, and may last forever.  KT is thrilled!  She says that she has never been pain free for 14 months (at least) since the last surgery in Ohio in late October 2011.  Here's how he did it:

1.  Massage the scar tissue inside her mouth in the area where the pain was coming from.  He softened the scars by gentle massage, called "rolfing," (which I had never heard of), until her entire tissue loosened up enough for him to progress from barely being able to fit his pinkie finger in there (between the cheek and the tooth/gums), to getting his index finger in there.  Then having KT feel with her tongue to see how much more room there was in there.  Meaning, too, that there is now more room for the toothbrush, which will allow her to keep that painful area cleaner.

2. Then, he used a very unusual little handheld device, called "miHealth," an energy tool that assists with healing nerve pain.  Here's a photo of the device.  Based on studies of acupuncture, it has various frequencies it sends out to interact with the nerves.  He used about 5 different modes on her over about 45 minutes.  Each mode decreased her pain further and further, until finally, she said the pain was gone.  I was amazed, and wondered how much of it was psychological, but he now has me convinced.  I'm hoping it will last for much longer than 48 hours, and I believe it just might!

Anyway, no decisions about any further surgeries were made, because the main focus of this visit was to find a way to relieve her of pain.  So we consider this a success!  (Even though his office didn't accept our insurance.)  He now wants a copy of her before-surgery CT scan to compare with the most recent one, so he can think about the situation for awhile and then come up with some recommendations.  Since this was the very first time he'd met KT, it was definitely a "get-to-know-you" session.

We like Dr. Matthews, and are still in shock as to how quickly he was able to help her overcome the long-standing pain.  Thank you for your prayers and faith.  We'll keep you posted as to how things go.

Love, Glenn, Pam & KT

P.S.  We had dinner with Judy Mosher, a long-time friend and organizer of many Treacher-Collins Retreats over the years.  That was a special "bonus" to this trip.  We're still trying to work out a time and place to meet with KT's birth Dad, but so far we haven't been able to work out the details, so it may not happen this time.

All's well

KT is recuperating today peacefully at her Grandma Whicker's house. The surprising thing was that Dr. Sidiqi found nothing that would anatomically cause the pain she has been experiencing. There was, in fact, no exposed bone after all. No infection, puss, fluids or anything. So, either the exposed bone they saw last week healed over in that short time, or, as Dr. S believes, they were only seeing white colored scar tissue.

So, he did nothing inside the mouth, but did make an incision on her right ear nub, to see what was causing the tender soreness and inflammation in that area. Again, he found nothing. No floating bone fragments, no fluid - absolutely nothing. We're all perplexed. It's great that there's no infection, but something has to be causing the significant pain.

We'll be heading to North Carolina on 26 Dec to see our one remaining hope - Dr Matthews. He's an older, more experienced surgeon for Treacher Collins patients. He finally called and has agreed to see her to help us determine what we can do. He has already reviewed her CT scan and uses alternative means of pain control. KT had a very rough night, but should recover quickly from the incision.

Thanks for your prayers and love!

Another

Kati's bone in her jaw is exposed again. The surgeon at primary children's hospital wants to do surgery tomorrow. So, we are departing in the morning to take her up. The pain just hasn't let up. Thanks for your continued prayers.

- Glenn

Homeward Bound!

Leaving the hospital now.  KT is not too swollen, just woozy from the drugs.  We're going to bee-line it for home and get her comfortable in her own surroundings.  The exposed bone was scraped, cultures taken, but the soft tissue was NOT closed over the exposed bone.  It was left open to heal on its own so if there is any infection, it has a way out.  Thanks for your prayers.

Surgery # 25

Katie's just now going into surgery.  Late night!  Looks like they will keep her overnight for observation. Cultures will reveal whether antibiotics are targeting all the right bugs.

Next Friday Surgery

Since she has exposed bone at the back of her mouth, they will be able to do the surgery a week from tomorrow at Primary Children's under only local anesthetic, and since they’ll be going through the mouth, it should heal very quickly.  We’re encouraged by that.  This might be easier than we first thought – we’ll see.  Katie asked a boy out for Sadie Hawkin’s Dance on Oct 13^th, and he just accepted, so she’s excited to get this surgery over with and healed quickly enough to go.  I hope it works that way!  She is such a social butterfly!  Thanks for the prayers and faith - it's doing the trick!

Osteonecrosis

After two weeks of increasing pain, we took Katie for another exam.  Diagnosis:  osteonecrosis in her facial bone.  So we got word yesterday that Katie has to go in for another surgery.  The bone in her face is dying, and has to be scraped again. Pam had to get her out of school today to rush up to Primary Children’s Hospital so the surgeon can make a plan for it.  She, Katie, is devastated.  She’d been doing so well since the surgery in June, and we’d hoped we were all done.  So an extra prayer in her behalf would be great.

We have so many blessings to be thankful for that we cannot complain. But we sure do feel bad for Katie.  At least she got through a wonderful tennis season, which she loves to play so much!  Her last match was yesterday, and she won!  So she has fond memories of a “normal” summer.

EFY

KT is at "Especially For Youth" (EFY) this week in Cedar City, and has been having a great time. Last night, her PICC line closed up on her, though, so this morning, Pam rushed up to take her to the ER where, thankfully, the medical staff was able to get it cleared so it didn't have to be removed. She is also having some shoulder pain with it, so they're doing an ultrasound to see why it's affecting her that way.  The good news is that she keeps her PICC, and gets to finish her week out at EFY. 

The reason keeping her PICC is so important is so they can do all the blood draws, CT/MRI contrasts, and IVs over the next year without having to poke her hundreds of times.  She is what they call a "hard stick," in that her veins have rebelled over the years and do not like being stuck, so they recede deep into her and are so tiny anyway.  Few technicians can get an IV started on her anymore. 

She's happy, growing in strength, and looking forward to starting the tennis season on Monday.  Thanks for your love and support!

Back to Cipro

We spent Sunday morning in the ER, where they did blood tests and a chest x-ray.  Turns out KT's white blood cell count is quite low (1.4?), so they immediately took her off the cefapime and changed her back to Cipro.  She was on that before.  They also put her on 6 days of steroids. She says her throat still feels constricted, but she's doing okay and wants to keep doing the fun stuff, so we went to Space Center Houston yesterday and had a great time.  We’ll follow-up with infectious disease doctor in Provo next week when we get home from Texas. Thanks for your prayers!

Allergic Reaction?

In ER in Houston with KT. She's had some sort of allergic reaction to the iv antibiotic.  She's coming around ok, but scared us for a minute there.

Master Healer

This is how we know the surgeries have gone to help Katie.  She's doing quite well, having been able to make girls camp and youth conference.  We are now in Houston to celebrate the baptism of one of her nieces.  Thanks for all the prayers!

Tailbone

P.S.  We just found out a few minutes ago that Katie's TAILBONE is broken, and is so bad that she'll have to have it removed!  Say what????  It's from an injury 10 years ago!

Yeast

My wife and I would like to thank  you for fasting and praying for Katie 10 days ago before her surgery.  Our entire Stake did a fast the day before, which wasn’t something we expected or asked for, but it made a big difference.  We felt you should know the results.

Katie is recovering very well.  We were surprised at a couple of things:

-        The surgeon did not find as much infected bone as was suspected; in fact, there was very little, but enough to harbor infection; that little bit was removed without having any significant impact on losing bone mass that was previously gained

-        In the cultures taken during surgery, MRSA did not show up, meaning the antibiotic is killing that particular bug.  However, pseudomonas did show up, which can be equally as difficult to deal with.  A change of antibiotics was prescribed to target the new bug.  We also just received notice yesterday that she has yeast growing in there too, so they’ll add another medication today for that.

-        The swelling was not as bad or as long-lived as we’d expected.

-        Her energy levels are slowly increasing day by day.

-        She’s in great spirits!

So, our deep, heart-felt thanks for your efforts in Katie’s behalf.  As I keep telling her, she’s a complicated woman!  But thanks to the many prayers offered in her behalf, she’s getting through this and plans to go to youth conference and girls camp this month.

-        Glenn, Pam & Katie

Positive

My wife and I would like to thank  you for fasting and praying for Katie 10 days ago before her surgery.  Our entire Stake did a fast the day before, which wasn’t something we expected or asked for, but it made a big difference.  We felt you should know the results.

Katie is recovering very well.  We were surprised at a couple of things:

-          The surgeon did not find as much infected bone as was suspected; in fact, there was very little, but enough to harbor infection; that little bit was removed without having any significant impact on losing bone mass that was previously gained

-          In the cultures taken during surgery, MRSA did not show up, meaning the antibiotic is killing that particular bug.  However, pseudomonas did show up, which can be equally as difficult to deal with.  A change of antibiotics was prescribed to target the new bug.  We also just received notice that she has yeast growing in there too, so they’ll add another medication today for that.

-          The swelling was not as bad or as long-lived as we’d expected.

-          Her energy levels are slowly increasing day by day.

-          She’s in great spirits!

So, our deep, heart-felt thanks for your efforts in Katie’s behalf.  As I keep telling her, she’s a complicated woman!  But thanks to the many prayers offered in her behalf, she’s getting through this and plans to go to youth conference and girls camp this month.

-          Glenn, Pam & Katie

Home

We arrived back home tonight in St. George.  Katie's pain levels are decreasing each day - she had a pretty good day today, despite the travel.  We're very hopeful the surgery did the trick!

Cefepime

The infectious disease Dr called tonight with word that pseudomonas grew in KT's surgical culture, so they took her off the ertapenem (once a day) and changed her to cefepime (twice a day).   Not sure if that means MRSA is gone, or if it just hasn't had time to grow yet.

Katie has felt pretty good today, comparatively, with decreased swelling and redness.  I got her a promise ring today, since I had forgotten to do it on her 16th birthday.

Your prayers are definitely helping!

Out of hospital this a.m. Resting at G'ma's house while we take Lyndsey to the MTC.

Contact

Primary Children's, Room 3077.  Visiting hours 9 - 9.  Please don't come if you're sick.  She looks great and is resting well.

Encouraging News

Well, we haven't seen her yet, but she's in recovery.  Here's what we know:

A.  Her teeth are a mess, but they were able to put 4 caps on some of the bad teeth, they pulled one that was unsalvageable, and they did one gigantic filling.  The rest of the dental work will have to be done in a dental chair, but this should start the reversal process of the horrible decay in her mouth.

B. The cheekbone is vital!  There was no dead bone in there, on either side.  All he found was some soft bone cement that he was able to scrape off, but he found no dead bone.

Conclusions:  Though the dental team did not feel they found anything that could be identified as the source of the infection, Dr. Siddiqi, the surgeon, is certain that the teeth were the source of her pain because he found nothing in the cheekbone that was "bad bone." 

Next steps:  Infectious disease will grow the cultures to see where the bone infections stands, and adjust the antibiotics to more specifically target the bugs.  We'll let the infection resolve completely, and then start looking at what we can do to build up her dental bone such that she can eventually be fitted with a dental prosthesis, as she will most likely lose all her teeth in the end.  Actually, a prosthesis may be the best overall solution because it would allow the creation of a good chewing surface, which is something she hasn't had all her life.

We are relieved about the fact there is no mushy bone!  Yeah!  Your prayers and ours have been answered.  She will be very swollen the next two days - even to the point of her eyes swelling shut.

Surgery Update

KT will undergo the 24th surgery of her young life tomorrow, Monday, at about 9 am (we have to have her there by 8) at Primary Children's Medical Center in SLC.  First, a dental team will go in, headed by Dr. Bailey.  They will do extensive dental work to try to save the teeth that have become involved.

They will be followed by the craniofacial surgeon, Dr. Sidiqi, whose job it will be to clean out the dead bone in her cheek.  Only when all necrotic material is removed can we hope to eradicate the MRSA infection in her bone.

We are very grateful for the many prayers you and so many others have offered and continue to offer in her behalf!

Surgery Delayed

No surgery today.  They want to do dental surgery at the same time they scrape out the dead cheekbone, so it will be week after next.  This way, she can go to EFY @ BYU next week, which is really important to her.

Nerve Dr. said her facial nerves are healing well and there is nothing more needed but time.  Her smile is returning, as is her ability to raise her right eyebrow.  She did say, though, that KT needs to exercise her jaw by keeping her mouth closed completely for 5 - 15 minutes twice a day to prevent permanent locking of her mouth in an open posture.  Pam was glad to have validation of her long efforts to get KT to work on that!

Pain today at a level 6, which is better than the 8 she reported earlier in week.  We'll be home Friday evening.

A little progress, perhaps?

The last 24 hours have been eventful, and we feel like there is some progress being made.  First, her braces came off, thanks to Dr. Brett Christensen, who felt that was necessary.  Then, today, she had a CT scan - and, miracle of miracles, the radiologist was able to "stick" her with an IV the very first try!  That almost NEVER happens because she is such a hard stick!  We thought she wasn't going to have to be stuck at all because she has a PIC line, but, come to find out, her type of PIC is not a "powered" PIC, meaning, you have to put the stuff through manually and cannot use a powered pump.  Evidently, the contrast used in a CT has to go through a powered pump.

Anyway, the CT didn't show anything more than the previous one did.  Which means, either there is no abscess, OR her anatomy is so different that it can't be seen.

The decision is that they will put her under anesthesia (date/time not yet determined), to look under her lip and into her cheekbone area, to ensure there is nothing there.  I am happy about that, because Dr. Gordon is sure there is some dead tissue in there, even though these local Drs.  think her problems are teeth related.

While she is under anesthesia, and now that the braces are off, they will do some cavity fills to give her a new start on oral hygiene.  KT says she feels a "bit better" today, so that is encouraging.  They may also change antibiotics.

That is the latest! Tomorrow is the last day of school, so we got her through another school year successfully.

Braces

KT's braces are coming off tonight.  Dr Christensen in St George believes they need to come off for 2 reasons:  to promote healing and to allow more definitive CT scan to pin-point the abscess.

Her pain has increased every day this week, so I finally got a hold of Dr Gordon in Ohio.  He thought the Primary Children's team had already gone in and cleaned out the abscess surgically.  He said that's the only way this will resolve, so we'll get that scheduled at Primary's as early this week at possible.

MRSA

We got the unfortunate word today that the infection in KT's jaw bone is MRSA, meaning it is resistant to some pretty high-powered antibiotics.  This is disturbing, to say the least.  The Drs. want to quickly do root canals on two more teeth, so we're doing those tomorrow.  This will eliminate some of the potential harboring of infection.  Then, they'll probably go in and remove the dead bone material that didn't take from her previous surgeries, as that goop also harbors infection.

They put her on a second antibiotic today, Septra, to supplement the one that's going through her PIC line.  Septra is taken orally. 

We're doing a fast for her on this coming Sunday, to plead for the Lord's intervention to help her get past this infection.  It will take all our faith, and the best efforts of the best doctors around, to accomplish this.  KT is in good spirits.

I'm sending Pam to Michigan tomorrow for 2 weeks to help Cami with her new baby, which was due today.  It hasn't come yet, but this ensures she'll be there in time for the birth, and be able to help handle the other hooligans.  It will be good for her get away and be able to focus on something other than KT's medical issues for awhile.  If we end up doing the surgery next week, we may bring her home early. 

Thanks for your continued prayers!

- Glenn

Ertapenem

Pam, Katie & Lyndsey are home tonight.  The PIC line was installed today, but no surgery.  Evidently, there is some disagreement between the oral surgeon (Siddiqi) and the dental craniofacial surgeon (Yamashiro) as to whether to do surgery right away, or give the IV antibiotics a chance to work for awhile first.  So they'll be discussing things next week and come to an agreement as to which way to go.  They do, however, want ALL the upper teeth on the right side to get root canals. 

The antibiotic she's on through the PIC line is a new one (at least I've never heard of it), called ertapenem.  She'll have 100cc's once a day.  We need to check on how this affects kidneys.

Time for bed!  It's good to have everyone home for a bit.  Thanks for your prayers.

- Glenn

PIC

The infectious disease Dr. in Provo confirmed that KT has polymicrobial osteomyelitis in her jaw bone, which is very serious.  She will undergo surgery on Friday to clean off the bones, and to install a PIC line, through which she'll receive antibiotics for 6 months.

Pam is very pleased that the Dr. in Provo (I don't have his name yet) was able to evaluate her so thoroughly and come up with the needed plan, and that he had access to an oral surgeon experienced enough to tackle the issue without us having to go back to Cincinnati.

We pray this man will be guided by the Lord to do exactly what's needed, and to get the road to recovery started.  This has been SUCH a rough road, and poor KT has suffered so much!  Thank you all for your prayers and faith - I know she will yet beat this.

All our love,

- Glenn & Pam, Lyndsey & KT

Infection

Please continue to pray for KT.  Her facial infection persists, and she continues to be in pain.  We are at a loss.

Turning the Corner

It appears that KT has finally "turned the corner" in beating this face infection.  She still doesn't feel back to normal, but the significant pain has eased enough that she could make it all the way through Church yesterday to celebrate Easter.  At the end of it, she was ready to immediately head for home, though! 

Dr. Bethers was able to successfully do the root canal in her back molar, thus saving the only chewing surface she has on that right side.  We are VERY grateful to him!  There is still one more tooth that probably needs a root canal, which we will try to get done next week.  The blood tests did show that her kidney function was not normal, so they took her off the strong antibiotics to allow the kidneys to rebound.  She'll have more blood taken today to ensure they are bouncing back.

The hyperbaric dives seem to be helping too, so we're thankful for that.  We had to remove her from 2 of her classes (one of them JROTC), in order for her to be able to keep up, since she has these "dives" every single weekday.  But now she won't be quite so overwhelmed, since she's still also catching up from the 1st semester when she was in the hospital.  This has been a really tough year, academically, but I'm proud of how well she's done at keeping and catching up. 

She's done with driver's ed, so tomorrow is her actually driving test.  We're going out to practice parallel parking today.  : )

Thanks to all of you for your love, prayers, and gifts.  They have helped her keep up a good attitude.  We send our love.

- Glenn

Still, the pain lingers

We keep thinking we've turned the corner, and found a solution for the facial infection, but it keeps on keeping on.  The poor girl is suffering tremendously.  We finished another round of anitbiotics 36 hours ago, and it seems like the pain and swelling are returning more strongly, so we're trying to get that renewed today.

Friday, the decision had been made to pull her back top molar, assuming infection is lingering there.  However, we realized, that if they pull that tooth, she'll be missing her ONLY chewing surface!  Which would complicate things even further.  There is also the concern that pulling that tooth might bring too much bone with it, and she doesn't have any bone to spare.  It might even break her jaw, which would be terrible.

So, Monday, the decision was altered to first do a root canal on eye tooth #6, which is where the visible swelling seems to come from.  While he's in there, he's going to see what, if anything, he could do toward a root canal on the rear molar - even though he has told us before that there just isn't room to get in there to do a root canal.  (We're getting a 2nd opinion on that issue today from a different endodontist.)  The first guy's aide told us there was another procedure, which I can't recall the name of, where he could go in from the side, by drawing back a flap of gum to get at the diseased root from a more accessible angle.  But now we're getting word that he doesn't want to even attempt that.

So, if this root canal on the eye tooth doesn't resolve the infection, we're likely going to have to pull that tooth and hope for the best.  We have GOT to get rid of that infection!  Her entire body hurts (which is another mystery to the Drs.  They've checked her blood several times and it doesn't show any sepsis, but something is spreading through her body). 

Her school work is suffering big time due to all this, and that's while she's trying to still catch up in English and Math from the 1st semester, which she got a way late start on.  Needless to say, we're all feeling a bit overwhelmed at the moment. 

We send our love, and ask for your continued prayers.

- Glenn

Diving

KT is going in just now for her 3rd of 40 scheduled hyperbaric chamber "dives."  The intent is to force oxygen into her cells via one and a half atmospheres (we live under one atomosphere), to promote healing.  I had this same thing done to help save my leg 4 years ago.  It is a painless procedure; each dive takes 2 hours.  We think we're seeing results already, but can't be sure yet.  She is still in a lot of pain.

We think another tooth needs a root canal, and are trying to convince the endodontist to start that process.  We've also been in touch with Dr. Gordon in Cincinnati, and may have to rush back to Ohio to have him open her up and clean out the infected area.

Please continue your prayers for this suffering little girl!

Love,

- Glenn

Pain

KT is in much pain tonight.  Antibiotics are finished and swelling increasing again.  Prayers, please.

Last Week

Dear Family,

This has been such a stressful week, I have not taken time to update you all on what has been happening to Katie. Sunday we took her into the ER for a facial infection, I think I wrote about that. By Monday, the ER doctor decided to take her off the IV antibiotics and put her on oral ones. That afternoon I got a call from Dr. Gordon, (Her Craniofacial Doctor in Cincinnati). He told me that the infection very likely was caused by the teeth, because he had cut the roots off when doing the Lefort procedure to distract the upper jaw/face. So it just happened that we were very near to her orthodontist’s office, Dr. Prince. So we stopped. All he had to do was pull up her lip and he found an abscess on the right upper side of her mouth. He worked out the puss and sent us to an oral surgeon in the same complex, just down the sidewalk. Dr. Bullock took a panorex and then a 3D picture of her jaw area and found two places where there was infection. He then told us to set up an appointment with an Endodontist, Dr. Starr and to return to the ER and get another CT scan, which would show the abscess areas better this time because the cellulitis, infection, had started to form the puss pockets. So we returned and they spent an hour finding another IV, which was sheer torture on Katie, but finally they found a vein. The CT scan showed the same thing the 3D picture showed. So she started once again with IV antibiotic infusions. She had two infusions morning and night on Tuesday, as well as seeing Dr. Needham, whom we were directed, on Sunday, to make an appointment. Ultimately, we saw so many doctors, yesterday, her pediatric dentist, who confirmed that it was Dr. Starr whom we should be consulting. By the time we saw Dr. Christensen, he knew all about Katie and had conferred with Dr. Bullock about her. There must me a great talking network among the doctors here, we also got a call from her general Pediatric doctor yesterday. Anyway, to shorten this long story, we saw Dr. Starr, the only board certified endodontist in St. George, yesterday. He did a root canal on a tooth, third from the right center, cleaned out puss and debri and put a temporary cap on the tooth. The molar top back right, looks also to be infected, we go in today at 12 noon to see if he can do anything with that one. It is a big problem because she cannot open her mouth enough for the doctor to get a tool into her mouth to drill a hole in it and clean it out. Please pray that the Lord will teach him how to clean the tooth out and relieve the infection. He may have to pull the tooth, but even that poses problems because once again, there is no room to pull it out, the back molars, upper and lower, touch when her mouth is open. I know the Lord can help us and I’m praying for the kind of help the apostle that is a heart doctor had with guidance when he worked on a patient with an enlarged heart and was prompted with every step what to do to accomplish what was needed. I know he can do the same thing for Katie. The Lord will yet Help Katie to have a more normal existence!

We are still planning to go up to Logan on Friday and go through the Logan Temple with Lyndsey on Saturday at 1pm. Looking forward to it and especially seeing Lyndsey and giving her a congratulations hug on getting her mission call.

We send our love and gratitude. Love, Pam/MOM/Grandma

ER, Again!

We found an open abscess in KT's mouth tonight, so the oral surgeon wanted us to go BACK to the ER to see what was going on. We just got home.  They did another CT scan.  It seems the infection was just being drawn to a point so it could be eliminated from the body, but what had us worried is that KT's neck on the right side was hurting, and her shoulder.  Turns out that is probably the lymph nodes doing their job of fighting the infection.  It took them 45 minutes to get the IV in tonight, poking her 7 times - needless to say, KT was VERY distraught, as she hates that! 

In the end, all's going as well as can be expected. She's completely exhausted, and she couldn't eat until 1030 tonight, so she was starving.  This is the last week of school before Spring Break, so she's trying really hard to keep going to school to finish strong, but it's hard.  She has to be back at the hospital tomorrow morning at 7:30 for another IV infusion of antibiotics, so she'll get too little sleep tonight.

Thanks for your prayers.  She has a nurse to watch over her tonight, so that's good. Pam's exhausted from Sunday's activities, and though I tried to get her to go home earlier tonight, she didn't, and now she's going to be in bad shape in the morning too.

Love you all!

- Glenn

P.S. Next weekend, JROTC has a PhysicalTraining (PT) competition in Las Vegas, and we selected the top 6 females and top 6males from our 220 cadets to compete. Guess what? KT made it into the top 6 females in our try-outs! However, she can't go because of this sickness, plus we'll be in Logan for Lyndsey's Temple event. But I was really proud of her -I wasn't involved in  at all, and she won it fair and square. Not bad for a little gal who breathes thru a trach!

Status Update

CT scan today showed no abscesses or pockets of infection, so it appears to be a superficial skin infection?  (Cellulitis.)  They have her on IV antibiotics (roxycin and clendomycin), then sent her home with the IV stent still in so we can go back every 8 hours to get another infusion.  She already looks better, but is wiped out. 

It’s always scary, but I think she’ll be ok.  This is the last week of 3^rd quarter, with spring break starting next week.  And the big airshow here with the Blue Angels.

-        Glenn

Driver License

Katie had to renew her driving learner’s permit yesterday, so she got a new picture. The contrast between her last one (a year ago) and this was pretty striking, so I scanned the permit pictures together and have attached them. The old one is quite scratched, but I think you can see the difference pretty easily.

We’ve been pretty discouraged about not keeping the airway we thought we had gained through the summer’s surgeries, and because no progress on getting the teeth to meet was made. In fact, the surgeries messed up her front teeth alignment, and it will take some time to get those back in order. But, as you can see, the shape and fullness of Katie’s face was significantly altered through the surgeries, so we can be thankful for the progress that was made.

Notice the shape of her chin, fullness around the ears, and the cheekbones. She looks great! We’re hoping she can learn to keep her mouth closed because she has such a beautiful smile! BTW, they take the photos now without glasses on because of the new facial recognition software in service.

Just wanted to update you. She is still having some facial pain from the most recent infection, but the swelling and redness is well gone, and we’re hoping the pain is related to the regeneration of nerve tone that was lost during the last surgery.

Thanks for your continued faith and prayers in her behalf.

- Glenn

Here are pictures from yesterday and today to show that the redness has decreased substantially, but the swelling is still there. She's feeling much better, and went to school today. We saw here ENT Dr. Marsden, and Dr. Gordon from Cincinatti also called today. They both say the antibiotics should do the trick, and that she needs to use the Peridex multiple times per day to keep mouth bacteria from backing up through the tract inside her mouth that leads to the new cheek bone material. Anyway, thanks for your prayers, and don't let up yet!

Doing Much Better!

8 Feb 2012

Dear Family,

                I wanted to share how Katie is doing.  An antibiotic was prescribed by Dr. Gordon yesterday.  Glenn tells me that Katie is doing much better this morning.  Her face was bright red yesterday and swollen, today her face is not red, still swollen, but not red.  I asked Glenn to get an ENT appointment with Dr. Marsden in St. George today.  So at 10am Katie saw the ENT doctor, who thought her infection looked like a cellulites infection.  He discovered that Katie has drainage from the back right side of her face into her mouth.  It is one of the places Dr. Gordon entered from the mouth to put bone in her cheek.  Katie says the drainage tastes horrible, but the nasty drainage has moved her to be more regular and particular about cleaning her mouth properly.  This is a monumentous blessing.  I don’t think this kind of motivation would have come any other way! 

                Katie’s continues to have facial nerve pain and her smile has a slight turn up on the right side as well as her brow will arch just a little.  So I was not entirely wrong to believe her nerves were healing and regenerating.  YIPPEE!!!!!!!!  I am wildly excited about this.  The ENT doctor says that it may take as much as a year for the nerves to return to normal.  So she IS going to have her smile back.  I love it!!!!

                It’s time for me to take Mother to see Vada.  So I better go, but I had to tell you the good news.  Thank you for your Love, Faith and Prayers in Christ in Katie’s behalf.  I sooooo appreciate it.  Love Pam