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.

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.

DAY 6: Discharge Soon?

EVERY single time I got KT settled down last night, someone came in to disturb her and woke her up.  She didn't have a very restful night for that reason - our timing was off horribly!  But...I monitor her pulse rate pretty closely all night, and last night was the first night it has ever gone below 100 bpm, which is a sign that her pain is decreasing overall.  In fact, at one point early this morning, I saw it at 67 bpm, which is pretty normal.  She was resting so well at that moment, and of course, someone came in and woke her up.  If it's not the main nurse, it's respiratory, or labs, or vitals, or housekeeping or something else.

Saline solution for hydration,
and feeding tube for milk. If
she can get discharged today,
we'll blow this joint!

Her sense of humor is coming out on occasion, though she still feels pretty sorry for herself: "Why do I always have to be in pain?"  She says she's ready to blow this joint and get over the the Ronald McDonald House (RMH), so we'll see what the Dr. says today.  Her swelling has definitely gone down, and the regular nebulizer treatments have thinned out her mucous substantially, so no more troubles with plugged trachs.  I think we could handle her care from the RMH, which would make her so much happier (and us)!

Her blood pressure is still pretty low, but we went for a good walk this morning.  She's not as dizzy, just weak.  It's nice to see her giggle every once in awhile now while watching a movie (The Avengers).  I'm getting QUITE good at understanding her sign language now, if I do say so myself, though she continues to use the text-to-speech app on her iPad when I don't quite get it, or when she communicates with the nurses.

We had a SECOND fire alarm on the 3rd floor last night!  Crazy.  Seems very unusual to have two fire alarms in one night from the same floor, different hallways.  Haven't seen Dr. Matthews yet this morning. Pam's been working on getting the equipment and other supplies needed for us to care for her from the RMH.

Thanks for your prayers - things are definitely improving!

DAY 5: Trach Scares!

KT must have a lot of thick junk in her lungs, because we keep having panicky incidents where she gets a trach plug and cant breathe. This hasn't been such a problem during previous surgeries, because she usually has her mouth to breathe through as a backup, but since it's wired shut, her trach is her only source of air.  I've handled 2 incidents on my own (I'm on the night shift), and Pam's handled 3 such emergencies during the days.  When it happened again this morning, I hadn't yet put my leg on, so I frantically tried to get my leg on while hopping over to grab the replacement trach to change it out, and KT really got hyper-panicked!   I yelled out the door, "EMERGENCY!" and I found out why they have a Quick Response Team!  Within SECONDS there were 6-8 people scrambling into the room, including an ENT Doctor, and they took over for me.  KT finally coughed up a big clog, and then everything started settling back down, but it spooked her badly.  She's had a pounding headache all day from that scare.

She has 2 of these battery-powered electrodes to
control pain on her rib harvest sight and one on each jaw.

Dr M believes the swelling has peaked and will decrease from here.  He is concerned about the firmness of the gland area under the left jaw area and started antibiotics today as a precaution.  Her blood pressure has been a bit low for 24 hours now (~90/60), so they've stopped the IV medication Dilaudid.  That also puts her a step closer to being able to come home to the Ronald McDonald House, which is only 3 blocks from the hospital.  She's light-headed when she walks, but her rib pain has significantly reduced, which is great news!  I think the little battery-powered stimulators that Dr. Matthews put on her ribs during surgery (see photo to the left) really helped accelerate that part of the recovery process.  Two days later, he put the same little gadgets on each of her lower jaws, but they haven't seemed to be as effective in that location, for some reason.

She's been quite loopy today, but Pam and she had a calm day since the trach incident this morning, which happened before Pam got here.  KT showered and walked today.

They just had a fire alarm on the 3rd floor of the hospital.  They told us to stay put and keep our door closed. We're on the 5th floor.  15 minutes later and I haven't even seen a fire engine!  Weird.  

Day 4: Post-Christmas

She had a very rough Christmas night. Her swelling and pain are still very high. I keep hoping we're about to the turning point. She's scared, but there's no real sign of infection; just a low-grade fever of 101.7 that's persisted for over a day now. The nurse (named "Honor") was so worried she called Dr Matthews early this morning and he added a med - phenergan.  She went right to sleep within 4 minutes of the dose, and has now been asleep for over 2 hours. This is the first sleep other than 2-minute naps she's had all night. Please keep up your prayers, and include a request that she can get over her fears. She's been through some pretty rough recoveries before; thus, the anxiety.

Day 3: A Hospital Christmas

Katie didn't sleep very well last night, but she was calm. We watched "A Christmas Story," which doesn't deserve it's place in classic films, IMHO.  She's started getting tube feedings, which is increasing her strength. She's used ice packs, which have reduced her swelling. Still dealing with a low-grade fever, but no one seems to be too concerned - seems to be considered normal post-surgery. She's getting stronger, and walking helps clear her lungs - been suctioning a lot.  Pain is still a significant issue - I think we'll be in the hospital at least one more night.

Nothing else to report.  Have a wonderful Christmas, and thanks for your prayers!  

Day 2: Carolinas Medical Center

Katie slept pretty well last night, but woke up in a lot of pain. This morning, she got out of bed at Dr. Matthews insistence, feeling quite light-headed. The rib pain makes it hard to move around much. We've started g-tube feedings to get her some strength, and have been trying to get a nebulizer treatment, as she says her chest hurts, but they still haven't filled that request.  She has a low-grade fever, but the Dr. expected that.

 I'm not real impressed with this hospital - they are very slow to respond to requests, and they don't automatically do anything that is considered standard for trached patients.  It's a very good thing that either Pam and I are here 24/7 or she wouldn't get the care she needs at all!

Today, she'll get to shower.  Her tongue is quite swollen, so she can't swallow yet - I think that's the thing that panics her the most.  Her pain is mostly under control, though we feel like we have to beg to get the meds when needed.  Both Pam and I have been pretty insistent, and have thus inadvertenly scared off one of the cute young nurses.  

This is not a great way to spend Christmas Eve and Christmas, but we knew that coming in.  Enjoy this beautiful season, and keep Katie in mind as you pray.

Address

If you'd like to send Katie a letter or card, here is the address where she'll be for the next 6 weeks:

Katie Whicker
C/O Ronald McDonald House,  Room 212
1613 East Morehead Street
Charlotte NC 28207

This is a WONDERFUL place to stay. 

 

Day 1: Post-Surgery Blues

Yesterday was a very anxious day, as we were awaiting word on Katie's surgery, which turned out to be 6 1/2 hours long!  It was a success, as declared by Dr. Matthews, which is good, but Katie was extremely agitated when she woke up.  It's been a very difficult 24 hours.  She looks good - much better than I expected, but the swelling hasn't really started yet.  He harvested two adjacent ribs to create the ramus, condyle and fossa for her jaw.  She's completely wired shut from the inside, which gives her a sense of claustrophobia, I think, and that's perhaps what made her so on edge last night (besides the pain).  She's been resting very well since about 6 am.

Today she has to get up and move some, to prevent pneumonia, even though it will be painful.  Dr. Matthews expects the ribs to be especially painful, but Katie kept telling me last night that her ribs didn't hurt, until 6 am.  That's likely due to the constant electrical impulse buttons he's sutured into that area.

They'll change her meds this morning to oxycodone via g-tube so she doesn't itch so much with the morphine, though they already switched to dilaudid for the latest dose.  We've done lots of suctioning of nose, mouth and trach through the night, I've sang to her and read to her, and we've prayed for calm.  I'm anxious to trade places with Pam this morning so I can go back to the Ronald McDonald House and get some sleep.  She went back at about 10:30 last night while I stayed here with Katie.

Thanks for all your prayers.  Watching my 'little' girl go through this kind of ordeal is certainly NOT my favorite part of being a Dad!  We all need to continue to pray that the rib grafts will take so that this jaw joint will stabilize.  He'll get her on some Vitamin D this morning to facilitate the fusion of the bones.

High-Res 3D Imagery - Pre-Surgery

Left Jaw

These 3D images from the Mayo Clinic show Katie's jaw anatomy much more clearly than anything we've ever seen before.  Most of us have a vertical bone (the ramus), which extends from the base of the skull downward.  Then, the jawbone itself is meant to attach to the bottom of the ramus, and extends horizontally so as to align with the upper jaw.

Katie is missing the ramus entirely.  Instead, she has only the lower jawbone, which is rotated upward without anything to attach to.  This is what causes her open mouth posture, and the small mouth that her tongue cannot fit into.

In the surgery this Thursday Dr. Matthews will fashion two ramus (vertical) bones from her own ribs, and will attach the new bone from the base of her skull to the end of her jawbone, forcing that lower jaw to rotate upward.  It is doubtful that he'll be able to completely close her bite so that her front teeth meet, due to the limitations of the soft tissue (skin, muscle, ligaments), but he will be able to get some of her back molars to meet, allowing her to once again chew.

Right Jaw

The Dr. expects her to experience more pain from the removal of the ribs than from the face, which is interesting.  She'll have her jaw wired shut for up to 6 weeks while the new bone heals and fuses.  Pam & Katie will likely stay in Charlotte for that entire period, though I have to return after 2 weeks to go back to work.

This is an entirely different approach than we've taken before.  Previously, the attempt was to GROW new bone through osteogenesis, and then "bend" the new bone while it was malleable, to rotate the lower jaw upward.  Soft tissue forced that bent bone back into its original shape, and thus nothing was gained.  This attempt makes much more sense mechanically, as it creates the normal architecture that makes for a functional jaw.

Katie was and is totally in control of the decision to proceed with this surgery.  Now that she is an adult, we relegated all decision-making to her, and this is the result of much prayer and fasting.  We pray for great success, and invite you to join with us in those prayers!

Jaw Surgery Deliberations

KT & her Christmas dog carrier;
We celebrated early due to surgery.

Let me share with you our path of deliberation over the last several months.  We have been so determined to find a solution to Katie's deteriorating jaw and teeth, that we decided to do a medical "blitz" and see all the very best craniofacial doctors and hospitals in the country last summer.  Of course, we didn't go back to Cincinnati, because our experience with Dr. Chris Gordon there was so catastrophic.  Here's what we have done, however, along with a very brief synopsis of what we've been told:

1. Dr. Nathan Adams (SLC): can't do anything about the jaw because there isn't enough bone at the base of KT's skull to act as a backstop to a jaw joint.  Wanted to try titanium, but decided it wasn't feasible.

2. Dr. Amir Dorafshar, Johns Hopkins (Baltimore): can't do anything about the jaw because there is not enough bone. Anyone who says that CAN fix her jaw is way off base and you should not consider their opinion. He also was considering the titanium route.

3. Dr. Kevin Arce, Mayo Clinic (Minnesota):  not sure if we can do anything, so we'll make a 3D model of her skull and study it. Schedule surgery for 22 Dec and we'll let you know whether or not we feel we can use titanium to build a jaw or not.  He has since stated that he cannot do the surgery right now - he needs more consultation and study with Dr. Matthew Carlson, Neurosurgeon, and Dr. Jonathan Morris, Neuroradiologist.  He will call us on the 15th to discuss his findings.

4. Dr. Matthews (North Carolina): famous for fixing jaws using bone and cartilage from the patient (no titanium); received insurance approval to do jaw surgery on 22 Dec (EXACT same day as Mayo Clinic's "holding" date), to work her jaw with rib grafting.

So you can see our confusion:  from "Can't be done!" versus, "Hey, I'm ready to do it." Katie desperately wants to chew, and we know and trust Dr. Matthews, renowned for his jaw work.  He is also the one who has been so instrumental in relieving her pain through the miHealth machine.  We are concerned, however, about the use of her own bone and cartilage, though we haven't ever tried that route - all of the past attempts have been through trying to grow "new" bone through osteogenesis (which didn't work).  We have decided that titanium,  which the new science generally prefers, probably wouldn't work with her because it might eliminate some of her existing bone, which is very sparse to begin with.  With own-body bone, there's always the problem of resorption, which we have experienced twice during previous jaw distractions, but there is also the issue of ankylosis, which other craniofacial doctors have warned us against, when using the patient's own bone.

Katie has fasted and prayed about it, and since she is almost 21, we have let her make the decision.  She has decided to go ahead with Dr. Matthews in North Carolina on the 22nd of December.  He will take two ribs from a single side of her rib cage, to form into the ramus and condyle missing in her jaw.  Then he'll wire her jaw shut for up to 6 weeks to allow it to heal.  Pam and Katie will be out there in NC for the entire 6 weeks; I'll have to come home on 4 Jan to go back to work.

We are NOT looking forward to this - it is HARD!  But Katie thinks it's the best option.  She has been quite stable lately, since the nerve repair in early October really did help reduce her pain significantly.  We certainly don't want to get her back into a situation where she suffers from nerve pain for another 5 years!  Please pray with us that this will work successfully.  Katie has had a couple of dreams about it, and feels she has received confirmation to go ahead with it, so we're supporting her decision.

Peripheral Nerve Surgery

5 October 2016, Wednesday

Katie had the nerve surgery today that will hopefully eliminate her facial pain.  Here was his consultation report:

"It is my impression, based upon the history and physical examination, and nerve blocks, that you have a painful neuroma of the zygomaticofacial nerve. This neuroma can be resected by going through the existing scar, with the nerve being cut back and placed deeply into whatever soft tissue or maxillary sinus remnant that we find. The positive nerve block suggests a 90% chance of a good to excellent relief of pain."

We did get the surgical report, but I don't have access to it right here.  I'm writing this 2 months later, and Katie's pain has substantially been reduced, though not entirely eliminated.  We are very happy with the results, and feel that further healing time will lead to even better results.  Thank you, Dr. Lee Dellon and Dr. Amir Dorafshar!

The Mayo Clinic

We were very impressed with the facility, doctors and staff at the Mayo Clinic yesterday.  A Resident Doctor Ettinger first spoke with us; he seemed well prepared, having obviously studied Katie’s CT scan from 2013 very well, thus being aware of her lack of facial bone.  He spoke very intelligently about the challenges of being able to create a ‘fix for her jaw.  He created no false hope, stating from the outset that they would have no immediate answers for us, and would need time to meet with craniofacial, maxillofacial, prothedontists and the company who manufactures the hardware they would have to use. 

Then, Dr. Arce came in.  Originally from Puerto Rico, we really liked him.  He, too, offered no false hope, emphasizing the reality of Katie’s situation.  Their goal is to ensure that whatever they do, they do not make things worse.  He implied that due to her previous surgeries, scar tissue, and other soft tissue limitations (i.e. skin) and the osteomyelitis (bone infection) would significantly restrict anything they could do.  He stated that there was no possibility of getting her front teeth to meet, so he asked Katie what her goal was.  Katie stated that she’d merely like to have a couple of back teeth meet so she can chew again.  She told him she’d lost almost 20 pounds in 4 months because those teeth that used to meet back there no longer met at all, and that her diet had been extremely restricted because of the new situation.

We liked that he asked what her desires were. 

We also learned a few things:  

• It is likely that the lower jaw distractions previously done (2004 and 2011) have NOT retracted as much as we’d thought; rather, the length gained is still there, it is just that Dr. Gordon’s (Cincinnati) method of trying to “bend” the elongated bone, rotating the lower jaw upward, didn’t hold, and instead, straightened.  Now, it is likely that that lower jaw bone is too long for a rebuilt jaw joint.
• Building a jaw joint may not be possible, depending on what the skull base surgeon finds.  In other words, the jaw joint is a ball-and-socket joint similar to a hip joint.  The “ball” part of the joint has to have a stopper behind it called a fossa.  Dr. Nathan Adams in SLC did not continue with Katie because he did not think the base of Katie’s skull had enough bone to provide that fossa, and that the ball, or end of the ramus (vertical bone of the jaw) would be able to push beyond the base of the skull into her brain.  That’s why he referred us to the Mayo Clinic, saying that they are the ONLY group that could even potentially perform such a surgery.
• They would not use bone or cartilage from her own body, if indeed they can do anything.  They would have an artificial jaw manufactured.  Dr. David Matthews (North Carolina) has proposed using rib and leg bone to build the jaw joint.  Such efforts are prone to ankylosis, where bone pieces grow together causing stiffness and ultimate seizure of any movement.  Artificial material has no ability to grow into itself, thus preventing any such complication.  (Though obviously, there are other complications with artificial materials.
• The condyle is the “ball” part of the joint, which, of course, is completely missing in Katie.

She had a new CT scan at the facility, with the goal of creating a 3D model for the team of doctors to study.  The team meets this Thursday.

We also saw their prosthodontist on the team, named Dr. Salinas.  None of these doctors was convinced that a denture would be able to be devised to help in Katie’s case because of the lack of bone.  We had to inform Dr. Salinas that Dr. Egbert, SLC prosthodontist, was convinced that dental implants were not possible in most areas of Katie’s mouth due to the lack of bone density.  (He once did a bone density measurement and found much of her jaw area to have a negative density reading!)

They sent us up to the medical photographer, who took pictures of her face and inside her mouth.  

They will use those, and the new CT scan, to build a 3D model of her facial anatomy.

They will contact us with a plan when they have time to study it and put a plan together, and then they will notify us of what they think they can and cannot do.  A very worthwhile visit!

Prosthodontist & MRI

We sure enjoyed staying with our friends, the Lawvers, in Dale City VA Thu & Fri nights.  They are so gracious  to make us so comfortable!

Friday was a real adventure.  Dr. Dorafshar, the craniofacial surgeon, wanted us to see the proshtodontist he works with before we left, so we went directly to the office of Dr. Sinadi for a quick visit.  He was awesome! We really liked him, and we liked the fact that these guys want to work as a team (surgeon and prosthodontist). We again got great reviews about Dr. Dorafshar.  We thought we'd have a team approach at Cincinatti Children's Hospital in 2011, but Dr. Gordon instead worked alone, and thus, it was impossible for him to accomplish the overall goal.

This is actually Drs. Dellon & Swanson from Thursdays nerve exam

Next, we went to get the "Tesla" MRI, which is supposed to be 3X the resolution of a regular MRI. We ran into some difficulties when we couldn't get the steel caps off of KT's ear implants - which MUST be removed before any MRI can happen!  The implanted part of her hardware is all titanium, and is MRI compatible, but those caps are steel, so they can connect to the magnets that hold on her prosthetic ears. Luckily, Paul Tanner, the guy who made her ears, has a colleague RIGHT THERE at Johns Hopkins, who does the exact same type of work he does. So, while waiting for the MRI (they were way behind schedule), we ran over to Juan Garcia's office, and he removed those steel caps. He had real trouble with one of them, it was on so tight. So even if we had the right tool, if we'd have tried to remove the caps, we'd have ended up removing the entire abutment, which would have immediately closed over and been impossible to get back on.

Unfortunately, after all the hoopla of getting insurance approval on time to be able to get this special MRI while we're still in town, the hardware in her head made it impossible for them to get the 3X images, and instead, were only able to get 1.5X the normal resolution.  Oh, well - we did what was humanely possible.

Because we had to delay the MRI until Friday, we didn't get back to see Dr. Matthews in NC for one last pain treatment, so KT's pain skyrocketed yesterday on our drive from VA to NC, and she's quite miserable as we prepare to fly home today (Sunday).

I purchased our tickets to Minneapolis for later this month, so we'll continue our medical blitz so we have all options in front of us for KT to make a well-informed decision as to which way to go.  

Dr. Dellon & Johns Hopkins Medical Center

Facial Nerves

Thursday we saw a completely new Dr. Amir Dorafshar at Johns Hopkins.  He seemed quite overwhelmed by all the issues that Katie presents, and wants time to study the CT scan and come up with a coordinated plan.  We were sent to him by Dr. Dellon, whom we saw once before almost 2 years ago, as he visits Las Vegas every other month.

We also saw Dr. Dellon again, a peripheral nerve pain specialist, in his office in Towson, MD.  He made a very interesting diagnosis that was quite different than the doctors in Utah, and which I think is more accurate.  He found that KT's pain is referred from the zygomaticofacial nerve (cirlced in red), rather than the infraorbital nerve (red X) that everyone else has focused on.  He shot her with novocaine there, and it completely took her pain away; however, it also numbed her right lip and affected her smile negatively.  Dr. Dellon told us that might happen, because he said with KT's anatomy, some of the motor nerves might be bundled in that same area, which would not be the case where there is a normal cheekbone (KT has NO cheekbone!)

He's obviously much more skilled in nerve issues than anyone we've seen.  It was refreshing to know that he could go in there in a relatively simple surgery to actually kill that one nerve that's causing the pain.  He assures us he would test each nerve when he got in there to ensure he didn't kill any motor nerve.  This test injection in clinic was very generally applied and he'd be much more specific during the actual surgery.  He could do the surgery as early as September, if KT decides to go with it.  Of course, it is not without risk.  But, it also makes sense that the area where this nerve presents is also the exact same area where the big abscess formed in Nov 2011, and coincides with the surgery to fill in the deep clefting she had where her right ear should have been.

Dr. Dorafshar wants to put together a complete craniofacial surgical plan to help KT's jaw, face and teeth.  We aren't thinking along those lines right now, though.  Our #1 focus is relieving her pain, and then, creating a jaw joint so she can chew.  The other incidentals aren't important to her.  If the miHealth machine controls her pain without medication or surgery, that still seems like an awesome option.

New Efforts - East Coast USA, Summer 2016

Dr. Matthews working his magic on Katie

Pam and I arrived in Charlotte NC on Wed, 27 July, and Katie met us the next day, as she flew in from Houston after having visited her twin sisters' families for a week. We saw Dr. David Matthews Friday, and he was once again very successful at immediately reducing her facial pain from a level 8 to a level 2, using his miHealth machine (previously mentioned in our 2012 visit on this blog).  It is just amazing to me that this thing works so well!  But it really lifted Katie's spirits, and we're working to purchase a machine for her to get trained on for self-treatment.

Dr. Matthews also reviewed KT's CT scan to see what was done during the 2011 surgeries.  He is a bit mystified as to what Dr. Stephen Baker (Fairfax VA, 2004) and Dr. Chris Gordon (Cincinnati, 2011) thought they could accomplish by merely stretching her bottom jaw bone since she doesn't even have a jaw joint to hold any new structure in place.  The left jaw bone is a full 1" short of meeting the base of the skull in the back, and therefore, any lengthening of that bone still would not have possibly provided any type of mechanical stability.

So, he is going to proceed on these three tracks to help Katie:

1. Facilitate our purchase of the miHealth device and get KT to use magnesium internally and externally to help control her pain (and tapping the distressed spot on her cheek with her finger)
2. Get a release from Katie to allow him to get all jaw distraction records from Cincinnati and Fairfax, so he can study exactly what they did during those original two distractions
3. Study how he can build her a jaw joint, possibly in December, using her own rib and hip bone; he needs the new MRI we'll be getting this Thursday at Johns Hopkins to ensure there is not soft tissue in the way of his building that needed jaw joint.

Dr. Nathan Adams in SLC was going to try to build a titanium jaw for KT a couple of years ago, but he didn't think there was enough bone at the base of her skull for the new joint to pivot upon.  I asked Dr. Matthews about that, and he said he saw a good spot on each side (though the right side is MUCH more bone deficient than the left side), though he cannot see how thick that bone is and needs to do some more studying.  

Katie had a dream a couple of nights ago that her jaw joint actually worked, and she was enjoying a big steak!  So I'm hoping she's receiving actual inspiration as to what can be.  Dr. Matthews convinced her that she really needs to do something, because she can't live the rest of her life with the dysfunction of her jaw that has continued to diminish significantly over the last several months.

Insurance-wise, we need to get this surgery done before she turns 21 in January, as her military health coverage ends on her birthday, UNLESS we can get her enrolled full-time in school.  As a FT student, her coverage will continue until she's 23.  So that's our plan.

We had another visit with Dr. Matthews today, after driving back down from Northern Virginia, where we spent the weekend with old friends from Dale City.  We also had the chance to visit the Pentagon 9/11 Memorial, the Air Force Memorial, and the International Spy Museum.  Again, today, Dr. Matthews was able to get KT's pain way down, even to a Level 1, using the device.  It's so amazing!  I really relaxes her, and she says it feels like a soft cool breeze, kind of like "dog's breath!"  Funny!!!  She loves dogs so much, that having a dog breathe on you is very comforting to her!

Tomorrow, we drive all the way back up to Baltimore, MD, (8 hours), to position ourselves for a Thursday morning meeting with Dr. Dellon (Peripheral Nerve Surgeon), and/or his partner, Dr. Dorafshar, to get a Tesla MRI, which is supposed to be a more advanced type of high-resolution image.  Originally, the idea was for this imaging to pin-point the nerve creating KT's pain, but it will also be very useful in Dr. Matthews' study of how to get her a proper jaw joint.

Thanks for your continued prayers in her behalf. It feels like we're making progress.