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.