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Down the Rabbit Hole and Back: Osteomyelitis Part 3

There might be enough for anyone to digest here.  If you are interested in reading Part 1 and Part 2 of this series please follow these links:  WWII:Osteomyelitis as Veterans:Duckie (Putting a Healthcare Puzzle Together) and Part 2:  Osteomyelitis, Solving a Healthcare Problem.

Now Duckie is at the recovery side of surgery number 2, and readying herself for surgery number 3.  Not Dr. Bone, not Mayo Clinic.  A new doctor, I’ll call Dr. TraumBone.  Four weeks after Dr. Bone said Duckie needed an expert in trauma, we met Dr. TraumBone.  Why did it take so long?

As I explained in Part 2, Dr. Expert, told us Duckie’s situation was not a good fit.  All roads seemed to lead to Mayo Clinic.  After a couple of weeks of messaging and pestering, Mayo Clinic agreed to look at Duckie’s files.  I called Duckie’s Major Name Brand insurance company, whose goal it is to “Make a healthy difference in people’s lives every day.”  Mayo Clinic is not in-network.

“What if we cannot find anyone in-network?”

“After you get the bill, you can appeal.  If you’ve exhausted all in-network possibilities, then we will pay as if Mayo Clinic is in-network.”

“What does ‘exhausted all possibilities mean?”

“No one in network is willing provide your daughter’s treatment, within a reasonable distance for you.”

“The surgeon already referred me to someone who says it’s not a good fit.”

“I can give you a list of other orthopedic surgeons.”

“I can get that off your site.  I want to identify someone qualified for this particular issue.  I’m sure I can call all the doctors on your list, and eventually someone will give it a whirl, but that doesn’t mean he’s qualified.”

“You’re right, but Dr. Bone could be recommending is golfing buddy.”

I try another line of questioning.

“What is considered a reasonable distance?”

“Mayo Clinic is 7 hours from you.  That’s not reasonable.”

“Mayo Clinic is 5 hours from me.  The recommended doctor is 2 hours away.  Either way, it’s an overnight stay for family.”

“What’s reasonable will be determined in the appeal process.”

We go round and round like this until he says, “Do you have any more questiions.”

“Yes.  I have plenty of unanswered questions.  Asking you is only going to further frustrate me, and probably you, too.”

I call the Nurse Linda, the caseworker assigned by the insurance company.  She says gives me the name of two trauma centers that are in-network and within a two hour drive.

I contact Dr. Infectious, the doctor I love.  He recommends a doctor.

I contact Dr. Bone and ask for a copy of all Duckie’s medical records:  CD/DVDs of cat-scan, MRIs, X-rays, surgical notes, lab results.  Wherever Duckie goes, she will need these notes.

Dr. Bone calls.

“What’s going on?” he says in obvious surprise.  “Duckie should not be this long without her next surgery.  Bring her in right away.”

I do.  I explain our adventure to Dr. Bone, including the insurance mis-steps, and the response from his referred doctor.

“Our offices should be straightening out the insurance information.”

I agree.

“The doctor I referred you to is experienced in this sort of thing; he works with veterans.  Maybe he’s getting old and grumpy.”

Maybe.

“You don’t need Mayo Clinic.  They’re good at solving mysteries.  This is no mystery.”

Dr. Bone refers me to Dr. TraumBone, whose office is about a 2 hour drive from our home, in the opposite direction of the trauma centers Nurse Linda recommended. I do ask Dr. Bone about the two centers.  He answers in an affirmatively vague way and moves the conversation in another direction.

Dr. Bone assures me that his office will make the appointment, make sure the hospital and Dr. Traumbone are in-network, and send all the records prior to Duckie’s appointment.  He does not apologize, like Dr. Infectious did, but he is remorseful in action.  Dr. Bone orders one more set of blood tests.  I take Duckie straight to the hospital to get the blood drawn, so that the results will be complete before the Dr. TraumBone appointment.  I get copies of ALL Duckie’s records, just in case.

Dr. TraumBone does not get any records or any sort.  Except from me.  I am organized with everything in a tabulated three-ring binder:  surgical notes, medicines, IRs, MRIs, X-rays, lab results.  No one has the results from the last blood draw.

“Based on what I see,” says Dr. TraumBone, “Duckie is in for three more surgeries:  First I’ll take the cement out that Dr. Bone put in.  All the antibiotic will be gone by now.  Second, I’ll cut out the remaining infection and put in beads impregnated with antibiotics.  Beads work much better than cement because of a higher surface area.  I’ll do what’s called a ‘soft close.’  After 2-3 weeks, I’ll change out the beads with fresh ones.  She’ll be on IV antibiotics again.  Third, I’ll remove all the beads.  After Duckie’s leg is ‘dry and clean’ for 4-6 weeks, I will do a bone graft and a hard close.”

Whoa!

“She will not be able to put ANY weight on her leg during that time.”

“So by Thanksgiving she will be healed.”

“That’s what I hope for.  Osteomyelitis is difficult.”

Dr. TraumBone schedules Duckie for surgery in five days, the Tuesday following our Friday appointment.  In the meantime, she tries to cram everything she might possibly want to do on two feet into the six days:  she rides her bike, she swims, she takes long walks.  I remind her she is still under restrictions from Dr. Bone not to twist or jump or fall.  She is still in danger of breaking her leg.

On Monday morning (9AM), I call Dr. Bone.

“I’d like the results of Duckie’s blood test,” I say to the Physician’s Assistants’ voice mail.

The hospital calls.

“Bad news.  Dr. TraumBone is in-network, but the hospital is not.”

I call Nurse Linda, she checks a few things and calls me back.

“The hospital is in-network, but Dr. TraumBone is not.  There’s a work-around, though, just ask Dr. Traubone to bill through the hospital.  If that’s not possible, I talked to a few people, and you have enough information to make a successful appeal.  It may take a few tries.  Don’t give up.”

“Thank you Nurse Linda.  I love you.”

At 4:45 PM, the PA from Dr. Bone’s office calls.  The numbers are in the normal range.

Whaaaat!  Seems like all the prayers paid dividends.  But, now what?  It’s too late to call Dr. TraumBone.

I relay the numbers to Dr. Traumbone on Tuesday morning, pre-op.

“Wow,” he says.  “Do you still want her to have the surgery?”

“I thought her leg is in danger of breaking.”

“That’s right.”

I wonder to myself, in what circumstances ‘no surgery’ would be appropriate, but I ask instead, “Can you jump ahead to the bone graft?”

“No, because of the pernicious nature of osteomyelitis, I should take a look, do a biopsy, culture, and pack with antibiotic beads.  We don’t want to do the graft, only to have infection set in again.”

This answer matches all the research I’ve done.  Those are the answers I like.  I always like answers that match my perception.  That said, the answer I like does not necessarily correlate with the answer correct answer.

Duckie is in the hospital for four days.  Dr. Traumbone removes a small amount of bone and inserts antibiotic beads into one end of the bone and out a new hole about ten inches above the first hole.  The bone removed is about three inches long and an inch deep.  Her bone is like a notched tree:  one wrong twist or turn, and TIMBER, down she goes.  There is so much bone removed that she may need a metal plate and a bone graft.

Results of the biopsy show no infection, some white blood cells.  The culture is clean.  No need for IV antibiotics.  Only one more surgery.  Yay!  Hooray!  Yippee!

“No weight on the leg.  Not even a toe-touch,” says Dr. TaumBone.

“Should she be in a wheel chair?”

“No.  She has three good limbs.  She should use them.”

Yes, he does know Duckie is mentally impaired, although painkillers do something to her nervous system to free up her reasoning ability and makes her quick-witted and bright as a tack.  Dr. TraumBone probably thinks I’m just over-bearing.

We go home for the weekend.  Post-op is on Monday.  Duckie complains about her medicine, especially her Luvenox injections, which prevent blood clots.  She cries hysterically when I swab her belly with the alcohol wipe.  It hurts, it makes her nauseous, it’s the worst thing in the world to ever happen to her.  She puts her toe down and walks on her bad leg.  Duckie is overheated, she doesn’t want to wear the brace, she unbuckles it when I leave the room.  She can’t sleep. She cries until she vomits.

We borrow a wheelchair.  If nothing else, she can sit more comfortably with one leg raised.

On Monday, an impromtu support group forms in the waiting room while Dr. TraumBone runs late:  A 20-year-old almost lost his leg due to osteomyelitis; a 35-year-old has had 5 surgeries after a car ran over her foot.  Duckie’s osteomyelitis is the most bazaar, surfacing 20 years after the initial injury, and taking two years to diagnose.

Dr. TraumBone answers all our questions during the post-op visit.  Loved One goes with me, and the answers come faster than I can write.

Q:  Why is her leg in so much danger now, if you only removed a little more bone?

A:  It has been in danger since the first surgery.  Dr. TraumBone explains the extent of bone removed once again.

Q:  Is there any alternative to the belly shots?

A:  Yes.  (Dr. Traumbone looks right at Duckie.)  You can get a blood clot and die.  Because the blood is made in the bone marrow,  whenever a long bone is disturbed, you are at great risk for blood clots.

Q:  Dr. Bone prescribed aspirin.  Does that work the same?

A.  I’ll bargain with you on that.  Three weeks of belly shots, then we’ll move to aspirin.

Q.  Can Duckie take the bandage and brace off?

A.  Yes, as long as you’re at home, and in a predictable environment.

Q.  She has to keep it on when she’s sleeping, right?

A.  (?? I didn’t write fast enough, and it’s 2-1 on the answer, Loved One believing Dr. TraumBone said yes.  Duckie decides she’ll keep it on.)

Q.  Does she need the metal plate.

A.  No, just the bone graft.

Q.  Is there a lot of art in your line of work?

A.  So true.

Q.  Can you prescribe a different pain medication?  She’s experiencing a lot of nausea.

A.  Vicodin it is.  Oxycondone goes for $80 a pill on E-Bay.

Interesting information.  I consider telling Dr. Traumbone that I plan to keep the Oxycodome, just in case me of Loved-One needs something for our pain.

We head off for a meditative walk in the Anderson Japanese Garden.   As long as we traveled two hours to get here, might as well have some fun, starting with the Swedish name for the Japanese Garden.  I wonder what the story is there?DSC05042

 

 

 

 

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4 Comments

  1. An impressive share! I’ve just forwarded this onto a co-worker who has been doing a little homework on this. And he actually ordered me lunch because I discovered it for him… lol. So allow me to reword this…. Thank YOU for the meal!! But yeah, thanks for spending the time to discuss this issue here on your web site.
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