Day 259 - 37 Weeks and Jan's Birthday

Yesterday was Jan's birthday. We didn't do a lot. She's not really thrilled with counting numbers. To me they are just numbers, one more doesn't mean that much as long as people don't treat me differently because they think I'm old!

For her birthday we did go to her church ice cream social with our daughter, her boyfriend, his two sisters and one of his cousins. The burgers were good and the ice cream was homemade. Lots of people and plenty of entertainment for the little ones.

In the last month, I've made three visits to funeral homes. My friend's father that was in an accident and put into a halo (the proper way) finally succumbed to his injuries. Next, my uncle of 91 went downhill quick and left us. Finally, Jan's second mother had become frail and passed away just before her birthday.

She is still going to physical therapy although I'm sure the insurance is about to kick her off. The physical therapist is a great guy and has never sent us a bill for any co-pay or anything. The lawyers want to wait until maximum medical improvement before they present the claim.

I just can't seem to put this behind me. I have blinding rage every single time I have to deal with anything related to Bilkmore. The reason is the bills, they keep coming in. Bilkmore does an even lousier job of managing their bills than they do with medical care. It turns out each visit is a new account number so the automatic payments I've been making are going to the wrong account. Not to mention the fact that we get four bills for each visit; one for the hospital/clinic, one for the doctor, one for the x-ray and one for the x-ray reader. Each of them gets a co-pay so we wind up paying nearly $100 each visit for the privilege of being frustrated to the point of screaming.

There can be only one solution: brainwashing to get it out of my head. While Jan was drugged and merely had to survive it, I was awake, sober and traumatized psychologically by the whole thing. I'm not squeamish in the least. I can dig into my own flesh to retrieve an impaled object but watching them treat her like that for 80 days is impossible to take without a lot of anger.

I called to find out why the account hasn't shown a posted payment in two months and I was informed the account had a hold on it while they attempted to move the funds to the proper account. Incredibly, the lady could not make the numbers she had match the ones displayed online. What were the odds? Based on previous experience, I was not surprised. She said she could send me a detailed statement but she would have to remove the hold and stop the money transfer. As a former computer programmer, that just goes all over me as being the dumbest thing I've ever heard.

We do not need socialized healthcare in this country or any form of single-payer. What we need in this country is a good system of billing and standardizing forms. Different accounts for each visit is BS. Paying a copay for four different things under the same roof is BS. Billing two different amounts, depending on the way it is paid is, you guessed it, BS. Maybe this should be an episode of Penn and Teller's BS show on Showtime.

Day 108 - Physical Therapy? Soon!

Jan had her second visit with the doctor today and, as usual, a simple thing is over six hours. That's the worst of it. The good news is she can take the collar off any time she wants. The doctor said she needs to wean off of it, probably within two to four weeks. At that time, she can start physical therapy. Her next appointment is not until July 1 when he, hopefully, will declare her cured and free do as she pleases.

For those that wish more details, they follow. We left at 12:30PM, arrived at the hospital by 1:45PM for a 2:30PM appointment. At all of the old appointments with the neurosurgery clinic, she had to go to the imaging lab at the main hospital by shuttle and then always to the OTHER IMAGINING LAB because they were backed up and then back to the neurosurgery clinic. Minimum of one hour both times plus all the hassle of getting a halo patient into and out of a van twice.

This time, we stopped at the imaging lab at the children's hospital ground floor, since we are trained to do that by the old clinic. She registered at the imaging lab at 1:50PM. The orders were not in the system so the check-in person called up to the doctor's office and they faxed them down. We waited 20 minutes and they said they were faxing them down but they never arrived. The guy finally went up to the ninth floor and got them. It was now 2:15PM.

The guy returned with the orders for imaging in his hands and put Jan in the queue. That took another 20 minutes and she was now officially late for her appointment. When she got back to the x-ray room, it didn't say if the collar needed to be on or off. They called the office but didn't get the doctor. They paged him and it took another 10 minutes. He called back and said to take it off. Jan didn't feel comfortable standing unassisted without it so the tech put me in a lead apron and I held her hands. She had to hold her head normally then bend her head forward and backward for x-rays of each view. She got through it fine if a little shaky.

We arrived on the ninth floor a good 45 minutes late for the appointment but still sat another 30 minutes in the waiting area. Once in an exam room, we spoke with the physician's assistant, the one that actually told me that the nurse practitioner canceled the appointment and she had scheduled Jan back with the neurosurgeon. Boy, was she honest and enlightening!

I won't spill all the details but suffice to say the NP rejected Jan's appointment and the PA promptly took ownership of the case and things have been so much better. She listened to the horror stories about the halo installation, the poor fit and the lack of support from the neurosurgery clinic. She said she took over Jan's case now and it would certainly be a better experience. So far, she has been dead on. The PA also told us she would brief the doctor on the issues before meeting with Jan and me and that we should tell him as well since he is an assistant professor at the hospital.

When the doctor arrived, we were fairly sure he was briefed but he played it very professionally, saying he would follow up on our issues and that she was past that portion. He said it would only get better from now on. She can't drive yet until the collar comes off and she can look to her sides and her weight limit is just 10 pounds but she is basically free of the collar when she has the confidence to take it off.

The tingling in her leg is a pinched nerve, caused by the vest. The doctor said it was much like a bruise. With luck, it will resolve within a few weeks or months. The pin holes are healed but still noticeably deep. He does not believe they will change much other than the pinkness of the skin turning whiter. I think she should at least consult someone about reconstruction to at least lessen them. After all, her forehead was fine after the accident and they are the ones that scarred her, physically and mentally.

After reviewing her x-rays with us, he said it looked very good. He said she would not need surgery, would not be paralyzed and there was no danger of her damaging the bones in her neck. According to him, it is healed well enough. The bones will remodel for some time but the strength is good enough to have no reservations.

He said she could take the collar off any time she wanted and encouraged me to help her wean off of it. Jan has the prescription for physical therapy now and can start in as little as two weeks but should be completely out of the collar in four weeks. PT could last as much as six weeks, depending on progress.

We left the office right about 6:00 PM and arrived back home just after 7:00 PM. A long day but overall, it was a good visit. Jan broke down a bit while detailing the trials she, and I by proxy had been subjected to through the previous months. If only she could have seen him from the beginning, things would have been so much better, possibly even tolerable.

Posts from here on will probably be fewer unless there is a funny redneck story to tell. I will continue to update on significant items as they occur but I think the worst is definitely behind us.

Day 90 - Survey Says...

Three months. 90 days. It seems like an eternity ago that everything turned upside down, literally. It has been a long journey back for Jan and she still isn't 100% yet but progress is slow when you speak in terms of bones.

Yesterday Jan walked something over a mile and a half. Pretty good. I took her to the mall to get a jacket and a few other things Tessa had put on hold at Old Navy. I took her in my truck, which did not have the handicapped tag in it. This meant we had to park in a normal spot and she had to walk a little farther. She did fine. Jan thinks that when it expires at the end of the month I should renew it. I'm hoping she does not need it renewed after March 30th!

After we arrived home, there was a call from an odd number we didn't recognize. It was a survey about Bilkmore. Too bad it was only about the neurosurgeon that took the halo off. I dearly wish it had been about any other single visit besides that one! Would she ever have let them have it! Does anyone else think they are cherry-picking the visits they survey?

The pin sites are healing nicely. All but one is now a pink depression. The fourth hole, behind her left ear, is still a bit scabby but is also healing. They are still a bit tender but not overly painful. I continue to massage them as they heal to prevent the skin from adhering to the bone.

Another halo patient contacted us through the blog. She was in an accident and started her own blog. She was looking for advice and a friendly chat about what to expect. Jan has corresponded with her a few times. I'm sure the poor woman is overwhelmed, just as Jan and I were.

We cleaned out the closet of all the slit t-shirts. They are now in the garage and will be recycled as shop rags. Of course, if you know a halo patient that needs them, I'll gladly forward them on.

Day 88 - Appointment Rescheduled

The doctor's office called on Wednesday and we now have an appointment for Jan on April 1, 2009, at the children's hospital again. I've emailed them to find out about getting x-rays since we took the CT scan on CD that we had done in Bowling Green.

The cold weather has put a damper on her walking outside so we went to Sam's last night to get some things and let her walk around indoors.

She continues to exercise her neck in small increments when we change the collar in the mornings.

Her church brought over two kinds of chili last night. It was very good. There was also a pumpkin creme pie, too!

Standing for any period of time still tires her out pretty quickly. Moving isn't as bad. Pain pills are less frequent and valium is about the same. Tylenol is her current pain pill of choice.

Day 86 - Appointment Cancellation? NO!

Yesterday was the first day I returned to work. Jan spent most of the morning working on homework while I went to the office. We IM'd and I picked up lunch at Zaxby's. She's walking just over a mile each day.

She is showering daily even though it is strange for her after three months without one. Her pin sites are cleaned three times a day and are healing well but the depressions are still quite deep and pink.

My work changed the FMLA date on my form to yesterday and informed me YESTERDAY! To get me through the expected recovery period, I faxed another form to the neurosurgery clinic to get it filled out since she still can't drive or turn her head.

I emailed the clinic to follow up on the fax since they have been horrible about getting anything completed. You can measure their response time with a calendar. Within an hour of the email, I received a call to cancel Jan's April 2nd appointment! No reason, only that the doctor's office would call to set up an appointment instead. I can't say I'm sorry we won't be seeing her again. After all, she'd still have had Jan in the halo for nearly another week.

Next, I faxed the form to be filled out to the doctor's office since the nurse canceled her. I faxed it in around lunch and I got it back by 3:30 PM! Amazing! Unfortunately, we did not get the replacement appointment call. I'll call at noon tomorrow if they haven't made a new appointment by then.

For show and tell we have the halo and vest assembled off the patient. It can be assembled symmetrically but it never was.

The back and front of the vest should have been positioned at the same level on the body. Instead, the back was at least a few inches above the front and it rubbed the area at the back base of Jan's rib cage nearly raw. I suspect she was only a few days away from a pressure sore.

Day 54 - News From the Front Line

After the MRI or CT scan debacle, I'd had enough. If it wasn't dealing with real people it would make a great comedy sketch in the vein of Abbott and Costello's "Who's on first!" It is utter carelessness that Bilkmore can't even get a simple scan order submitted correctly and shows the pattern of carelessness that they have now become synonymous with. After repeated calls, we think it is all settled but then again, it is Bilkmore so something can still go wrong.

By late Tuesday I'd had enough and called the "Excellent Care" number. I spoke with a very helpful clinic manager. She said she'd been with them since October and had been straightening out one mess after another. That did not give me any more confidence in the clinic. I'm now wishing we'd known about her from the beginning. This manager finally had to fax in Jan's work's request for continued treatment verification herself. All of this is after an in-person request to the nurse last Thursday, a call on Friday and a call again on Monday!

IMPORTANT NOTE - Valuable Lesson #2: If you are being treated by a nurse practitioner, you have the right to request to see the doctor instead. I wish we'd have been told that from the beginning. Jan is so afraid they will retaliate against her for complaining. She is very fearful of me making such calls. The lady assured us they would not negatively change her treatment because she complained.

As of right now, she is supposed to be seeing the actual neurosurgeon at her next appointment on March 4th at 4:15 PM! The CT scan is now scheduled for March 3rd at 2:00 PM. She will be going to the children's hospital to see the actual doctor. Don't ask because we do not know how she wound up with a pediatric doctor! Hopefully, he is used to dealing with people like me, childish and stubborn! I'm thinking since we've gotten away from the non-doctor administrative types that the real doctor will be more agreeable in person. Putting a face to an x-ray or CT scan where she can voice her own concerns directly has to make a difference.

I thought I was going to have to fight with the scheduler about the difference between 12 weeks and three months again! Months don't divide into evenly calculated weekday boundaries, either. She kept trying to make it a full week later than her original appointment. You can tell these people don't have a clue how horrible this experience is and continues to be.

Three days is 3.5% of 12 weeks. As such, three days cannot make an appreciable difference in how well the bone is healed and, therefore, when the halo can be removed. Standard practice from all accounts is to wear it four more weeks if the bone isn't healed but shows signs of healing.

Obviously, she doesn't want to have to wear it one single day longer than absolutely necessary. Pray for her! If it doesn't come off March 4th, pray for both of us!

Day 52 - CT Scan or MRI?

Day 52 opens without definitive answers and 29 days to go. Jan called the imaging company on Tuesday about "The Scan" only to be told there was no appointment. Next, she called the Bilkmore clinic and was told the scan order was sent in yesterday but they never notified us. Back to the imaging company she calls and they found an order but it is faxed in on an MRI sheet, not a CT scan sheet. The MRI tech says that even though the vest and halo are MRI safe, it may not be the best choice. She said they generally do a CT scan to confirm bone healing. An MRI can confirm that as well as view the soft tissue. THE MADNESS!

Jan and I both agreed Bilkmore cannot communicate for anything. They tell us one thing and do another. When both of us remember it one way and the nurse says something different, I believe two against one.

The MRI tech, at Jan's request, was going to call the NP and request clarification on the type of scan. Hopefully, a medical professional to medical professional phone call will not have a 48-hour turnaround. The MRI tech promised to call us back once she had confirmation on which scan was needed. That didn't happen yesterday so Jan is going to call Bilkmore one more time.

Regardless, she has an appointment for an 8:00 AM something on March 4, 2009, with the report and images going with us. Effectively, we will know the results before we even get on I-65. The radiologist is the one that reads the images and makes the report. Neuro just has to agree or disagree.

Update from last week: The doctor I was told would call me, the one that allegedly supervised the halo-sadist, is hereby deemed useless as well. Still no call from him. Jan's care could NOT get any worse. If complaining and lodging formal, written letters result in any repercussions for her, they are even more pathetic than I can possibly imagine.

Will this nightmare ever end? I have the "Excellent Service" phone number on speed dial if they sent in the wrong order. That is negligence! Is there any wonder why doctors are the third leading cause of death in America?

Sometimes I believe they are actually trying to harm her but that's just the paranoid in me creeping out. When I start thinking like that I'm reminded of this quote:

"Never ascribe to malice, that which can be explained by incompetence." -- Napoleon Bonaparte

On a happier note, Jan went to her floral arrangement class on Tuesday night. That was the first time since the halo she's been left someplace I haven't stayed with her. I drove her there and dropped her off with a friend that is also taking the class. The week before we confirmed Jan could get in and out of her Blazer before I was OK with it. She brought Jan home without incident. It is also the first time Jan has ridden with someone besides me since the accident.

Day 48 - Just Like Starting Over

Today is supposed to be a nice day and we are 75% of the way through the second course of antibiotics so I'm hoping we can wash her hair again. With any luck, the dizziness will be subsiding and the next 33 days will be smoothly haloing.

We are supposed to join some folks from work for a meal out tonight but this morning is turning out to be a bad stomach day. Nothing but toast with her medication this morning. She usually feels better by lunchtime but it totally saps her morning. Right now she is trying to do some homework for her online class while her belly gurgles.

Friday was an even rougher day for Jan. She wasn't feeling any better after the tightening and said it felt just like she's starting over with the halo. The dull, aching pain of bolts pressed into your skull can't be pleasant. Poor technique on the NP's part doesn't help any.

It also doesn't help that the antibiotic is causing her stomach problems. Just two and a half more days of antibiotics. The only bonus is the pins won't get infected as long as they are in her system.

I got her to eat a little cereal with milk along with her medication before I went to work for a while. I can do almost everything from home but there are many distractions here at home. I can't help but go check on her every hour or so and ask if she needs anything. Unfortunately, she's a light sleeper, the steps are wood and my shoes wake her up if I go down the stairs. I was hoping most of the day at work would let her rest undisturbed with the safety net of Tessa being home on a snow day.

The clinic finally called with an appointment. It is March 5th, 12:45 PM. I'd have preferred a bit earlier in the day but I'll take what I can get. We still haven't had any information on the local imaging appointment but we have another four weeks to get that setup. I will not let it slip away, trust me.

The patient advocate lady called back, apparently because the radiology director stirred up a few folks. She said she had spoken to the NP and thought everything was fine. Jan told her she was complaining about the resident that put her in the halo. The NP is just a pain in the neck, literally. She's backing the resident 100% with her refusal to even attempt any comfort measures.

The attending or whatever who was allegedly supervising the resident is supposed to call me but nobody has a date or a time. I give him until Monday evening before I decide he is useless.

Jan begged me to take the halo off of her again on Friday night. When the level of frustration is this high and the quality of care from the professionals is so low it almost seems viable to put the collar on her and take our chances. Bilkmore talks a good game of patient care and compassion but it has been sorely missing in every single encounter with anything neurosurgery related. I didn't start out this angry and frustrated. They started it with complete disregard for the human being inside the halo, starting at 2:00 AM on December 15th. From there it has been a defense of my wife's health and well being in the face of many obstacles, most erected by the very people that profess to be helping her.

Speaking of collars, I've still not heard anything on the bill where one of my questions was about them charging for two collars when we only received one. Incidentally, for those keeping tally, the Aspen collars can be bought online for between $50 to $60 while the hospital billed them at $110 EACH!

The good news is she only had one pain pill in the last five days and that was for the ride to Nashville with all the rough asphalt. She's been managing with Tylenol (acetaminophen) since Tuesday. She still asks for them but I try to get her to realize that narcotics aren't for everyday pain. If she asks twice, I'd give her one but I'd rather her think about it before habitually just popping one of the harder medications.

I absolutely will not allow the pins to be tightened again. If there is any evidence of bone regrowth and stabilization I will see that halo removed, voodoo witch or not. There is a point where healing is adequate and the diminishing returns of staying in the halo any longer add nothing to the outcome.

Day 24 - Infection

One of Jan's halo pin sites is infected. Today when I cleaned it I got a lot of debris on the swab. We put in a call to the Bilkmore Neuro Clinic yesterday and they never returned the call.

Today it looks like the pin has fully pierced the flesh, leaving a small void around it and it is red around the perimeter. I finally called back and asked to speak to someone immediately. I have got to find someone else to look after this. I now detest Bilkmore and think they are either overworked or just incompetent. I'm so frustrated with the whole affair I can't see straight!

It wasn't like this Monday. They tightened her pins, which twisted them and dug them deeper into her skull. Click on the image to see a high resolution image of the hole in her head. They did call in a keflex antibiotic. I pray this resolves it quickly.

Day 22, Part 2 - The Rest of the Story

It has been a long day and I know I've taken a while to get this up. My apologies! For those of you that noticed a lull in Jan's email replies from yesterday, there was a computer death in the family. Her computer kept shutting down for no reason with increasing frequency. A faster and much quieter computer replaced it this morning.

And now, the rest of the story. I'd like to state, this is my view of events. Jan sometimes disagrees with my exact phrasing but not enough to make her own blog.

After moderately medicating Jan we set off for Bilkmore around 1:00 PM for our 2:30 PM appointment. It takes just over an hour, depending on the city traffic once you hit Nashville. Today wasn't bad and we found the Neurosurgery Clinic with little trouble. The handicapped mirror placard is a real time saver since Jan's gate is a bit slower than before the accident (BA).

The first thing we did was to register and then take the shuttle over to the main hospital to get some x-rays. I also dropped by and picked up her records and images to date. The main x-ray lab was quite busy so we were sent "just down the hall" to the other radiology lab. Poor Jan was worn out after the half mile round trip walk. I watched as the x-rays popped up on the console and could see what I felt was the problem. Her back vest plate is shifted to one side. The x-ray tech was non-committal, "I just shoot them."

We then returned to the Neurosurgery Clinic around 3:15-ish. We had about a 30 minute or so wait for the NP to show up. When she arrived she started to explain things but stopped and went after the spine model. I pointed to the spine and said, "Jan's fracture is here." She looked and me a bit funny and agreed, "Yes."

She went on and explained how the nerves radiate out from the vertebrae and what is controlled by each level. She touched one and started counting and I impulsively said, "C4" to which she finished counting and asked if I'd studied the spine. To which I replied, "I've had three weeks of nothing from the medical experts treating my wife so I did my own research." She kind of raised her eyebrows and went on.

We started addressing our concerns: Jan's lack of sleep, increasing pain and the poor fit of the vest being the main ones. The NP agreed to let Jan try a timed release pain medication to see if that will allow her to get a full, uninterrupted night's rest. She said the pain is just something to manage. I'm not thrilled with that but if we can get Jan some rest, whatever it takes.

The poor fit of the vest was a bit contentious. I was adamant that it could be made more comfortable or it was the wrong size based on my reading of the manufacturer's web site. The NP did loosen the waist straps another notch, which puts them at three. That tells me she is at the outer edge of a medium if it only has three notches to go. She finally had them page someone from the halo-vest provider to come in and check out the situation. She believes he is the "expert" in halos. He arrived about 30 minutes later and said that if anything Jan's was too loose!

I again produced the manufacturer's web page of the sizes and pointed to Jan's measurements and the vest sizes. It was at this point the NP wasn't as thrilled with my self education as previously indicated. At one point she told me I should treat my wife myself if I knew more than she did. Let's just say I got under her skin and we now have an understanding. The NP now knows I'm not a push over and I am not stupid.

Once everyone cooled off (and I didn't go to jail) she said we were doing an excellent job of keeping the pin sites clean. Metal is piercing skin and that is always problematic. She and the "halo expert" asked about the t-shirt Jan was wearing. I explained how we slit them down the back and she steps into them like a dress. The slit is hidden by the back of the vest. They thought that was pretty ingenious.

All things said and done, more was said than done. She did spend about an hour and a half with us and showed us many x-rays. She tightened the four pins in Jan's skull and loosened the waist straps by one notch. If you read the documentation for this halo stuff, you'd think it was possible to kill the patient by simply touching the upright bars or changing the straps. Let me tell you, the NP held onto the bars for leverage while she cranked down the pins in Jan's skull. Yet another case of medical Do-as-I-say-not-as-I-do. The NP even said that if she, herself, were injured, she'd want surgery over the halo! Why weren't we given that choice? Her excuse, Dr Second-Year-Resident thought it best without consulting us first.

The good news is we go back in two weeks (never thought I say that!) and she is going to order a CT scan to confirm what a single plane x-ray cannot, alignment and actual bone placement. I still do not like the rotated head but the NP says that it will 100% not result in any permanent damage. She better be right.

On the plus side, if all the calcium, vitamin D and protein we've been pumping into Jan has done any good, at six weeks the CT scan might show something. If we can short cut the 12 weeks by even one week safely, it would be worth it. The NP did say she'll need a collar for six weeks and then physical therapy after that. Her proposed release date is now set at May 6, 2009!

At this very moment, Jan is resting after having taken the timed release pain pill at 8:30 PM and turning off the TV at 10:00 PM. I've got my fingers crossed. I, myself, am going to try a dramamine tonight to see if I can sleep beyond three hours. So far a shot of Wild Turkey just made me sweat, wine had almost no effect and benadryl just made my mouth dry out.