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

Improvement

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!