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Friday, February 17, 2017

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???

Friday, January 13, 2017

1/2 Way There! With A Pleasant Surprise!

videoTalk 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.

Thursday, January 12, 2017

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. 

Thursday, January 5, 2017

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.

Tuesday, January 3, 2017

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. 

Monday, January 2, 2017

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

Sunday, January 1, 2017


Today, Katie made some good improvement.  She's back to eating (Ensure, on the pump), she showered, she sat up in the chair for 3 hours, and the swelling and redness has diminished.  They took her off one of the 3 antibiotics they had her on, and her pain has been under control.

I've made arrangements to postpone my departure from here (Charlotte, NC) to next week so we can get her out of the hospital and back to the Ronald McDonald House (RMH) before I leave Pam and Katie alone here for the remainder of her recovery.  There is no way we could do this without the both of us while things are so critical.  Once we get a good routine going at the RMH, then I think Pam can handle it.  But right now, there is so much that needs to be done at night, and one person can't handle the care both day and night.

Thanks for your prayers - they're working!

Friday, December 30, 2016

Dreaded Infection!

After KT got out of the tub this morning, her FIRST morning out of the hospital, Pam noticed an abscess forming on her left jaw.  NO!  We've been here before in 2011 - not a happy development.

Dr Matthews is evidently out of town, so he sent Dr. Franks right over to the Ronald McDonald House to examine her.  He said he needed to aspirate the cyst in his office to see if it was clear fluid, or pus.  So we went on over there, and sure enough, it was purulent, full of infection.  So he readmitted Katie to the hospital tonight.  Katie was beside herself with grief!  Since she's been through infection from a previous surgery, it really scares her.  Surgery is scheduled for 0730 tomorrow for Dr. Franks to go in and reopen her up and clear it all out surgically.  We're hopeful that it hasn't compromised the new bone in her jaw.

This is all twisting, turning journey that we'd have love to have avoided.  I called the local Bishop today and he sent over the missionaries, who helped me give KT a blessing.  Please keep her in your prayers.  And thanks for the emails, cards, texts, SnapChats, and packages that you've sent.  They have all helped to keep her hopeful.  But I will say, she is extremely discouraged right now.

Thursday, December 29, 2016

DAY 7: Discharge!

KT is so thrilled to be able to transition to the Ronald McDonald House today!  It is such a comfortable place, and they have therapy dogs that come each week to visit with patients - how do you beat that?!  Plus, it has a tub, and although she won't be able to fully submerge, because of the rib incision, she will be able to soak the lower half of her body.  They removed the bandage from her chin this morning, change her prescription from Loritab (it gives her a bad headache), and got everything else in order for us to go "home."  It'll be nice to be off this night shift - I feel like a zombie...

Ok, for some humor:  since KT's jaw is wired shut, she cannot speak, so she uses her iPad app to do text-to-speech.  For several days, she used a British female voice, which was sometimes hard for me to understand, so yesterday, she switched it to a deep male British voice.  Imagine me dozing off in the middle of the night, and suddenly being brought to consciousness by the deep male voice saying, "Sorry, Daddy, but I have to go potty!"  Oh, man, it just made me laugh!  My goodness, it's nice to find humor in what has been a very stressful situation.

I got my ticket last night to return to work on the 5th of January.  It'll be hard to leave Pam & KT here alone for the last month of her jaw being wired, but it will work.  When I come back to get them, maybe we'll go do something fun together here on the East Coast.

She's got a long way to full recovery still, but things are going in the right direction, for which we are very grateful.  Thanks for your prayers in her behalf.