Dr. Dellon - again!

6 Mar 2018.  We went down to Las Vegas to meet with Dr Dellon about Katie's jaw pain. In a matter of 2 minutes, he expertly diagnosed and identified ntify the offending nerve in her face. He showed us how he could repair that nerve by burying it, and give her some pretty immediate relief. So, we're planning to go to Baltimore in June to accomplish that. Hopefully, this time we can get insurance to cover it. If not, it is very expensive! But we've got to find a way to get her out of this continual pain. And we know his methods work, because he was able to rid her of the cheek pain a couple of years ago.

Free the Jaw - June 2017

Monday, 26 June 2017

Finally, 6 weeks after the revision to the initial jaw surgery, Katie got "unwired" today!  She was so happy to be freed, she was all smiles in the recovery room.  Thankfully, we got into the Ronald McDonald House again - these people are SO kind to us!  We only stayed from late Saturday night until Wednesday afternoon.  We flew here from Houston, where we had been visiting for 2 days for my granddaughter Adelle's baptism.  We'll fly back to Houston, where Pam is, for a few more days' visit before heading home to make our big retirement move from St. George to Payson, UT.  We're right in the midst of having a house full of boxes, packed and ready to move!  Makes for a wild life right now.

The new combo bone in her jaw, from hip and rib, has evidently come together and healed well.  It's not a common combination, and Dr. Matthews says it was new territory.  But it seemed to work.  He reports that her jaw moves well, and that the bone will continue to strengthen with use.  He cautioned her to eat only soft things for at least the next month, to give the bone plenty of opportunity to solidify.

As to "next steps," he says she must work with her prosthedontist in SLC to see what he can do in expanding her upper teeth so that they meet the bottom teeth better.  Dr. Matthews figures that is the best, and maybe only, approach from this point.  He got a little emotional when he said goodbye to us, as if he didn't expect to see us again.  I think he has stretched himself quite a bit in accomplishing this much, and he doesn't have any more ideas.  So I hope Dr. Nick Egbert in SLC, the prosthodontist, will be able to do something.

Step 1 is to get her some serious dental work.  She has a lot of cavities, as you can imagine, after having her jaw completely wired shut for 3 out of the last 7 months.  During this most recent wiring, she fell when she got out of the bathtub one time early on, and hit her mouth guard hard against the door handle.  At the time, she felt like she broke a front tooth, and sure enough, when she got unwired, the right canine tooth is chipped.  (Dr. Matthews didn't find tooth fragments during the surgery though.)  That needs to be fixed ASAP as well - KT reports that it is very sharp.

Charlotte NC - The NASCAR Hall of Fame

The pain in her right lower jaw area, well below the new bone area, was caused by some infection starting to develop around the wire that was holding her mouth shut.  "Grannulated tissue" he called it.  He thinks it will resolve itself, by draining into her mouth or through the incision, and he did not feel it necessary to give her antibiotics since the bone isn't involved.  It is still very painful to her, and I hope he's right about that - I do NOT want to see another full-blown infection arise out of this!  She did sleep very well the first night after surgery, but last night was not quite as comfortable.  I think it would be prudent to just get her on antibiotics to ensure this clears up.

KT and I got to go visit the Charlotte NC NASCAR Hall of Fame yesterday.  It was THE best museum I've ever been to, and I'm not even a race fan!  So educational, and so well done - I'd highly recommend it to anyone visiting this area.

On, now, to get KT back on the normal track of her life - of course, with continued efforts to get her bite to close for eating...

Revision to December Jaw Surgery

Katie and I (Dad) arrived back in Charlotte NC late Saturday night for Monday's surgery to strengthen KT's new jaw.  About a month ago, the left rib bone that was grafted to make her a jaw joint "popped," causing her a lot of pain. After analysis by a CT scan, it was indeed found to be a fracture.  The screws were hurting her badly.

We only plan to be here a week. Dr. Matthews suggested we use some of her iliac hip bone to add between the rib bone and the original jaw bone to strengthen it all into one strong jaw bone.  Katie had to make the decision on the spot in pre-op to decide whether she wanted:  a) to merely take out the offending screws and go on allowing the rib bones to eventually completely dissolve; b) go in and fix the left side only, which was the fractured side; or, c) go in and strengthen the right side as well, since it was also very weak and could eventually fracture as well.  It was a HARD decision, and she asked what I thought she should do.  It was difficult for me to tell her that I plain just did not know!  I received NO inspiration at all, and told her it was entirely up to her.  She thought, decided she should do the whole thing - both sides, and told Dr. Matthews so.  He then left to prepare (along with Dr. Franks and a Dr. Sanchez).

As soon as they left, Katie asked me if she had made the right decision. Again, I told her that I didn't know, even though I was secretly thinking that it surely would be a lot easier if we were just to get the screws removed, which would alleviate the pain, and move on.  But, I told her, Heavenly Father knows, so let's ask him.  She had me say the prayer.  I asked her what she felt after - because, again, I had NO inspiration!  She said she thought she made the right decision.

The rest of the pre-op wasn't real positive.   They couldn't get an IV in,  so that traumatized her.  They finally gave up so they could get it in under gas anesthesia once in the OR. She was very brave right up to the last minute, but lost it when she heard her Mom's voice on the phone. "I wish Mom was here." I'm definitely not as good a comforter.

Screws can come out now. He thinks we left her wired shut too long last time (because of the infection). The jaw needs to be used to strengthen. So it will only be wired shut 4 weeks this time. He says we're in uncharted territory - ­ he really doesn't know exactly how to approach this.

I was SO glad she decided to go ahead with it once I got the report from Dr. Matthews.  3.5 hours after rolling her back, Dr. Matthews just came out. I felt the Spirit strongly as he reported to me, which is great, because I left it totally on KT to make the decision this morning.  Here's his report: bone taken from right hip - stuffed in between the rib graft and the mandible (jaw). Rib graft was "viable" on both sides, meaning it was alive and bled, which is really good - that means it hasn't died. Soft tissue will hold the new graft in place while it adheres or molds into the bone on either side of it to make a strong, total structure. Screws were removed (yeah!). No new scars - used same old incision points. She will stay in the hospital tonight for sure. He didn't think the face intrusion would bother her much at all, as it wasn't as severe as last time.  However, that has not proven to be the case!  The first 24 hours have been pretty difficult and painful.

I told her I didn't think the hip thing would be too bad, because I had hip bone graft taken out when we were trying to save my leg several years ago, and it didn't bother me at all (that I can recall, anyway).  That has not proven to be the case either, as her hip is extremely sore.  She can barely walk on it right now.

Dr. Matthews looked me in the eye as he reported all this to me - in December, his eyes kept shifting away from mine, so I knew he wasn't totally confident in the results last time. I truly think KT made the right decision here, and that this will ultimately strengthen her jaw bone and make chewing a reality. I am SO happy! Your prayers have been heard, and they have given me strength, and blessed KT tremendously.

The secretions haven't been a big problem this round - they were one of the scariest parts of the recovery last December.  And of course, we are CERTAIN there will be no infection this time, which was the real big trial back then.

THANK YOU FOR YOUR PRAYERS!!!!  We still plan to go home Sunday, so she can be with family and Oreo and Katniss, her animals.

End in Sight!

Katie's jaw was supposed to be wired shut for 6 weeks, which would have been 2 Feb.  However, we were all devastated when the CT scan at that point show very little healing, and the Dr. informed KT she had to go two additional weeks to allow more time for healing.  There was some question as to whether the union of the new bone graft was happening, and Dr. Matthews was concerned.

So, instead of going back out to Charlotte NC last weekend to bring Pam and KT home, I went out for a morale visit, and left them there.  The visit was really nice - we ALL needed it very much.  Hugs, kisses and tears were shared.  I know I came away much rejuvenated, as I had been a little down about the whole process.  Katie and Pam needed my love, too.  So it was good.

KT had her 2-weeks later CT scan on Wednesday, and today Dr. Matthews said it showed enough healing that he was going to go ahead and do the surgery to cut the wires on Monday.  KT is elated!  She's already got the first few meals planned, because all she's been able to eat for EIGHT & 1/2 WEEKS now has been Ensure, soups and an occasional milkshake.

Interestingly, the surgery has opened up her throat and mouth enough that she has started SMELLING things that she's never smelled before!  We didn't expect that little bit of change - she'll ask, "What is that smell?" when a car with bad exhaust is in front of us, or when we're outside and there is a strong floral smell outside, or a good meal cooking somewhere.  So that's been fun.

Even though the fusion of the bone, and the new bone itself, isn't as strong as the Dr had hoped they'd be by now, he feels that allowing her to chew will put pressure on the bone and help it get stronger.  So, we're not completely out of the woods yet - please continue to pray that the new joint will stay together and continue to strengthen.  We know that it is by faith, prayer and fasting that this much progress has been made, and we thank you for your part in that!

Here are some images of the new jaw joint - BEFORE, and both immediately after surgery 8 weeks ago, and just this week.  What to make of it all???

1/2 Way There! With A Pleasant Surprise!

Talk about an eventful day!  Daughter Jami showed up magically at the airport right while we were trading rental cars!  Imagine that!  It was a well-coordinated surprise that was very effectively carried out by all concerned.  Both Pam and KT were pleasantly surprised, and Jami's assistance came in a very timely manner, as I depart today to go back to work.  Thanks for coming, Jami!

We also had a nice visit from Judy Mosher during dinner time, a friend who coordinates all the Treacher Collins Retreats.  She and her daughter both have TCS to a lesser degree than KT, and they are superb advocates for families who need resources to learn about and deal with the syndrome.  She is, in fact, the one who first directed us to Dr. Matthews here in Charlotte, because he performed all of her and her daughter's surgeries.

Yesterday marked the halfway point of KT's jaw being wired shut!  She has learned to sip soup through a straw in the side of her mouth, and to use baby food squeezables to get a bit of flavor in her diet.  She has begun to be able to smell, which she's never been able to do before, so that has increased the intensity of taste.  She says everything tastes so strong!  So that's a nice little unexpected benefit of this latest surgery.  The infection continues to diminish daily, and we continue to pray the bone itself will hold up and fuse where and how it's supposed to.

Progress & Visits

Sorry I haven't updated for awhile. Things have gone pretty smoothly, though there is still no confirmation that the new bone grafts have "taken." We met with Dr. Matthews and Dr. Franks on Tuesday. The infection is under control, though the abscess continues to drain some each day.  They will take CT scans towards the end of January to see how the bone is doing. The infectious disease Dr. is treating it as if it's osteomyelitis, though all 3 doctors think we caught it early enough that it didn't go further than the soft tissues.  Thus, the PICC line, which we are managing quite well here at "home." The antibiotics make KT very tired, but she is not in much pain at all - in fact, less pain than the last six years!  That is what's so amazing.

Her face definitely looks different, and the two rib grafts are apparent as the swelling goes down. Having her mouth wired shut with her big tongue stuffed into the back of her mouth is putting pressure on the front teeth, so they'll need to be readjusted when this is all over. She figured out how to drink tomato soup last night with a straw by stuffing the end of it way back into one side of her mouth!  She's also used baby food squeeze packs to get a little bit of taste in her mouth.  All other nutrition is provided by the g-tube.

Robin Kargoll's daughter Faith has Goldenhar Syndrome,
with lack of facial bone similar to KT's.  There is a TLC
special on this syndrome called, "A Face Like Mine"
if you want to look it up.  We enjoyed Robin's visit!

We've had some very lovely visits:  one from Anita Aldrich Birley, a gal from our Virignia Ward who now lives down here near Charlotte, and one from Robin Kargoll, the Mom to a young girl with a facial syndrome closely related to Katie's Treacher Collins Syndrome (TCS). Her daughter, Faith, has undergone the same types of surgeries KT has had to endure.  We've been in touch by phone and over the internet before, but this is the first time we've met in person.  Lovely people!  Today we expect another visit from Judy Mosher, who organizes worldwide retreats for families with TCS.

Yesterday we had another very great blessing, in that we were finally able to resolve the insurance issue for KT.  Because she turns 21 next week, her military health insurance coverage changes.  So we've been worried about which of 3 options to pursue to keep her insured.  The best alternative hasn't worked out yet (it still may, down the road), but the 2nd best option came through, which was much less expensive than the 3rd option!  So we're happy about that!

KT wanted to get out of the house yesterday, so while Pam napped, I took her to the Discovery Center in downtown Charlotte.  We had a nice time, and it got her moving pretty good.  I leave tomorrow to go back to work, while Pam and KT will stay here for up to another month.

Thanks for your prayers. Please continue to implore the Lord that these new bones in her face will heal correctly, be infection-free, and be mechanically effective as a jaw joint, as that is the entire purpose of this. 

Nausea - the current hurdle

The nausea continued today - we thought it was doing better.  These antibiotics must really throw her system for a loop!  But she's definitely much stronger - it was a good day overall, and she'll thrive better outside of the hospital.  Dr. Franks promised her she could go home to the Ronald McDonald House tomorrow, so she's excited about that.

Not much else to report.  The swelling continues to decrease, and the pain is minimal now.  The cyst has mostly drained, though it still has a ways to go.  She's sleeping calmly right now.  Thanks to everyone for the prayers, and for putting her name in the Temples.

- Glenn

Under Control, 2 weeks after surgery

It looks like her nausea is under control, finally.  It must have been the vancomycin that caused it, and the extreme weakness.  Yesterday, she was able to walk down the hall 3 times, and shower, and tolerate feedings.  She got stronger and more steady with each walk.  Her infection in the face looks better and better as well.  She still feels wiped out, and keeps signing that she's "done with this!"  But once we get back over to the Ronald McDonald House, she'll be fine.  Today marks 1/3 of the way through the 6 weeks of having her mouth wired shut.

Dr. Franks just came in and said that if she has a good day today, he'll release her to the RMH tomorrow.  So Katie is all for that, and will make sure she has a good day, just so she can get out of the hospital!  I asked if we'd lost any bone healing time due to the infection, and he thinks not.  So 6 weeks is still the goal - one month from now.  Even though they'll treat it as if it was a bone infection, it likely wasn't - they just want to ensure they treat it aggressively so as not to have further problems.

All's looking brighter.  Thanks for your prayers.

Bacteria ID'd & PICC line

The cultures from her face came back today, and specified e coli and candida as the two main culprits infecting Katie's face.  That kind of surprised me - I'd never heard of contracting e coli other than from eating undercooked food!  However, in researching it a bit, "These bacteria can also cause infection of the prostate gland (prostatitis), gallbladder infection, infections that develop after appendicitis and diverticulitis, wound infections (including wounds made during surgery), infections in pressure sores, foot infections in people with diabetes, pneumonia, meningitis in newborns, and bloodstream infections. Many E. coli infections affecting areas outside the digestive tract develop in people who are debilitated, who are staying in a health care facility, or who have taken antibiotics." (Merck Manual).  I guess it is definitely contractable from surgery.

So they changed her antibiotics to target these two bugs very specifically.  It has wiped her out - she had no energy at all today, though I did finally convince her to take a short walk this evening.  Then we played a game of chess and watched a movie, plus a sweet video of Cami's family that she sent to us.  She's started wanting to drink, but can only swallow very small droplets of water from a straw at a time.

She got her PICC line inserted today, as she'll have to be on these antibiotics for 6-8 weeks.  We have to be very aware of any nausea, because since her mouth is wired shut, vomiting would be dangerous, as she could inhale it through her trach.  So we have a pair of wire cutters by the bed, and if she has to vomit, we are to cut the mouth open to allow proper expulsion.  But they want to avoid that at all costs!

Katie is still very discouraged - any notes of encouragement directed to her personally would be appreciated.  You can Facebook, Instagram, SnapChat, email, text, or use any other form of contact.  She likes getting messages on her phone.  Email me if you'd like her contact info:  whick@juno.com. 

Drain Removed

The drain that was put in during
surgery on Saturday and removed
today, because it wasn't effective.
The washing out of the infected
area was effective, however.

Evidently, the drain they put in the side of her face during the surgery on Saturday wasn't working as advertised, so Dr. Franks took it out at her bedside today.  That wasn't pleasant!  The infectious disease Dr (Richardson?) said they haven't yet got a firm ID on the "bug" that has attacked her face, but there are a "lot" of different bugs growing in the petri dish.  She says that's a bit unusual for a facial infection, but may indicate there was some communication between the mouth cavity and the jaw joint during the initial surgery, as the mouth DOES have many varieties of flora growing in it.

She can't tell if any of the infection has entered the bone, but thinks at this point that there are good signs that it has not:  no fever, and a much improved look to the infected area after only 48 hours. In any case, whether it's only affected soft tissue or not, she'll be on strong antibiotics for an extended period.  The vancomycin really zaps her strength! Her intestines started working today, so there's another sign of progress.

I extended my stay here for another week.  I hope things are more settled by then.

- Glenn