Day 62 - Happy Valentine's Day

Day 62 with just two weeks and four days to go!

If Jan feels well enough for the short trip, we are going to the Shaker Tavern for Valentine's Day dinner. A group at her church organizes one every year. We haven't gone to one for a few years. A couple from the church has been offering to take us out to dinner more than once but circumstances have not been with us. They were the ones that invited us to Valentine's Day dinner. I hope she feels up to it this time. I will post pictures if there are any that turn out well.

Yesterday I took Jan by her work to visit with coworkers and to do a bit of work. Any excuse to get her out of the house and walking around is a good thing. It is the only exercise she can do.

I'm working from home with the odd day at the office so I've not used up as much leave time as she has. Her work's policy is to use all paid sick leave and then paid vacation leave before going into unpaid status. We asked if she could go unpaid immediately since we don't need the money and I'd rather have her not use up her vacation time. After this is all over, we need some time out of halo away from everything. But, I don't write the policy and her last paid day is probably next week with no vacation time to speak of for the rest of the year.

While we were on campus, I suggested she go volunteer in the nursing class so the students could get an idea of how to deal with a halo. There is a dearth of information and education on the subject, especially in the medical community.

On the way home, we went by her favorite store and picked up a single-serve blender-ish device called a Magic Bullet. We are hoping it makes getting her daily yogurt requirement easier by mixing it with fruit and ice to make a smoothie.

Magic Bullet Website

The insurance is all screwy now. Our primary health carrier is paying the bills when it should be auto insurance. I've called, futile as it seems, to inform them they are not responsible for the charges due to it being an auto accident. All that got me was another form to fill out and the explanation that it would all be ironed out in subrogation. My only concern is they actually paid Bilkmore for stuff I have contested, such as two collars and too many morphine injections. At this point, I don't care enough to worry about it. My only focus is on March 4th!

She felt really achy on Thursday and I gave her half of one of her better pain pills. It really helped. I let her have the rest of it at bedtime and she is back to Tylenol all day Friday and nothing so far on Saturday.

Now for some picture updates. Here's how it looks when she stands, as viewed from all four sides. You will notice how far forward her head is craned to "preserve" the all critical, overriding and comfort-be-darned spinal alignment!

Day 60 - Taxing Experience

Jan has only today and tomorrow to go on her latest antibiotic. Her neck muscles and the pins are all the pain she has at this point. The calcium intake and yogurt are continuing right up to the minute the halo comes off! I might let her slack off on the yogurt after the halo comes off but I'm still debating.

I took her to vote on Tuesday at Natcher Elementary. I'm sure a teacher had some explaining to do to her students as they looked at Jan walking the hall. We saw one of Tessa's former teachers and he recognized her and asked about Tessa. When Tessa voted later that same day he asked about Jan.

Then, the wind and rain were terrible on Wednesday! My mother arrived to stay with Jan for the day before it started the worst. She brought a pecan pie and a pumpkin pie with her. She also made supper before she left. It is a good thing Jan didn't get out that day. I went into work the whole day since I knew she'd have company. Her friend that originally cut her hair after the accident dropped by for a touch-up. It was a pretty busy day and she didn't even have to leave the house.

She wants to go grocery shopping today. If the weather holds and the day starts off well, we will go get some more yogurt that she loves so much.

If all goes well, on Valentine's Day we are going to a church function at the Shaker Tavern at South Union. She is a bit worried it will be a long trip but US 68-80 is a nice, smooth four-lane road and it is only 20 minutes away. I think she'll enjoy a night out, around other people.

Here's a picture of the halo and her head from the top. You can see that the left front pin has considerably more threads into the halo than the right front pin by a noticeable margin.



On a sad note, I finally started our taxes. How depressing.

Day 58 - More Antibiotics

Day 58, 22 to go until the halo comes off! Three weeks until the CT scan, also known as The Scan! I intend to have slides of the scan up before we leave for Bilkmore along with the report. There should be no surprise on the actual neuro visit.

I still have not received a call back from the doctor that we were promised last week by the Neurosurgery Clinic manager. His office called because he's the doctor Jan will be seeing at the children's hospital. There is only one acceptable outcome at this point.

While at the GP on Monday for lab results, the doctor looked at the pins and decided she could use another antibiotic. Third one in a month! These are not great pictures but they do exhibit what the back pins look like. I have trimmed as much hair away from them as I can from time to time but it is very hard to get to them. It is even harder to photograph. Her hair is a little damp from just being washed but that is the best way to see the pins. When it is fully dry the hair has to be held back with clips to even get a look at the rear pins.

The GP also had some advice for getting through the CT scan, take a whole valium an hour before the scan. He said it would be a better anti-vertigo pill than the plain dizziness pills she has.

Day 56 - Eight Weeks Later

Today is eight weeks since the accident. Jan doesn't take anything but Tylenol for pain for the last week. She can go almost all day without anything. I give her two Tylenol at night to get past the neck pain so she can sleep. She doesn't take anything stronger unless we are making a trek rather than a short trip. Unfortunately, the halo still causes her pain in her pins and the weight of it all is as tiring as ever. It was never properly fitted and pushes on her head rather than holding her head up. This, in turn, makes her shoulders sore from the constant shrug she subconsciously does to alleviate the pressure. So goes the endless cycle of needlessly annoying pain.

At present, Bilkmore is showing an appointment on March 4th with the doctor and on March 5th with the NP. We aren't going to cancel the appointment with the NP until we are certain that everything is falling in place. The last thing she wants is any delay getting out of the halo.

As an observation, I've noticed she no longer involuntarily moves her eyebrows and, by extension, her forehead. She still can if she tries but it doesn't happen automatically anymore. A smile doesn't result in any movement above the eyes. If you look at the previous picture at the WKU President's Recognition Luncheon, you can see it in her face. So, a halo has the same effect as botox! Doesn't everybody want one now?

She's been averaging at least one yogurt a day and sometimes two so that gets her more calcium! I'm positive March 4th will be THE DAY!

Jan had non-accident related lab work done on Saturday. She sees her GP to get the results late Monday. Nothing out of the ordinary. Routine cholesterol and glucose checks. While we are there she is going to get her inner ear checked as well as the pins looked at to be sure they are both OK. No more speed bumps to this recovery.

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 50 - The Unforgiven

I hope this Groundhog Day is not like the movie, reliving the same day over and over!

Jan's appetite returned last night after she stopped the antibiotic. She was on the eighth day of 10. One doctor, relayed through a nurse that called, said to stop the antibiotic, don't take Immodium and they'd call in another antibiotic course. Jan wasn't really happy with that since she'd already taken an Immodium on Saturday night and had already taken the Sunday morning antibiotic. The nurse could not elaborate on the reason to not take Immodium and only repeated it. I see a pattern here with nurses.

For confirmation, she called the pharmacy again. They had the same old story about stopping an antibiotic before the full course would allow the infection to come back, possibly stronger, blah, blah, blah! Well, if it is causing side effects worse than the original illness, it is time to regroup!

Thankfully, a second doctor, one she prefers to deal with, called back and said to stop the antibiotic and get the side effects cleared up before she starts anything else. In her current condition, anything too stressful on the body is harder to deal with.

She has agreed to try more yogurt in her diet, which she hates. Twice a day is what she said since it will help replenish the good flora in her digestive tract. We've already tried the drinkable yogurt. That wasn't very palatable either. She's been taking a probiotic since the first round of antibiotics a few weeks ago but the latest antibiotic was so strong it didn't seem to help.

Never again will I look at the medical profession as if they are miracle workers. That day has come and gone. Never again will I trust the word of a doctor or nurse as gospel. Their interests are not always my best interests. Never again!

Switching gears now. My sister, the nurse, says that if we go to therapy, the first thing the therapist is going to ask me to do is to forgive the people that I hold responsible. I'm not ready to do that just yet. Filing complaints makes me feel better than any therapy could. I need to stay agitated for a while longer. It helps me have the will to deal with these people. When I'm not, I'm ambivalent and I let things slide, sometimes until it is too late to do anything productive.

After 50 days without any counseling, I don't think it will make any difference anyway. We needed it on Day 1. In my opinion, that window has closed.

Day 49 - Gastric Distress and the Great Indoor Flood

First, the two items in the title are not related so don't panic.

Day 49 started just like day 48 with Jan's tummy still in turmoil with the antibiotic. Just two more days of that. She tried to contact the pharmacy and the urgent clinic that prescribed them to no avail. In the end, we decided it was better to take a single Immodium to try to alleviate the symptoms than to continue dehydrating unchecked. Hopefully, someone will call back this morning. She's still not eating much and that bothers me but she eats what she can. Toast and Jello are not very filling or nutritious.

The preacher brought over some food yesterday afternoon but Jan only ate one of the cranberry jello squares and a crescent roll. Something is better than nothing even if it does have an extremely rapid transit time.

She's not running any sort of fever. We have been monitoring her blood sugar as well just to be on the safe side. It is usually in the 90s or just over 100 so that seems pretty stable. She has some general lab work coming up this week and she wants to postpone it. She's agreed to call the doctor to see if the medications she's on will skew the results. I don't think painkillers will have any effect that can't be accounted for.

The vest is causing her a lot of pain in her shoulders. She's humping up her shoulders in a permanent shrug all the time to take the pressure off of her neck. The NP and the halo guru say it is supposed to be supported by the belly. It is amazing how these supposed professionals could care less for the secondary problems this thing causes and have no interest in even attempting to correct it. I finally had enough and took some of the lambswool we'd cut out and stacked it under her shoulder straps. At least she doesn't have to keep as much pressure on her shoulders to take some of the weight off.

I finally think I can articulate why I distrust the NP so much. She is not a doctor, first and foremost. She may be good at the basics but she does not have the knowledge of a doctor. She may have seen a lot but she is actually only parroting what the doctor tells her and I believe things get lost in translation. Her solution to everything is more pain pills without ever understanding the underlying cause. Her complete and total lack of willingness to even consider adjusting the vest tells me she has no skill to speak of. All she ever wants to do is tighten, tighten, tighten.

The Great Indoor Flood

For something on a completely different subject, the Great Indoor Flood of 2009 hit last night. Our washing machine has a very small hose, about a quarter of an inch in diameter, that senses the water level. It came off once early last year and flooded the utility room and then the kitchen while the lady that cleans the house was doing a load of towels. Once in five years didn't upset me too bad. You can guess what happened again last night.

Luckily, I had the wet/dry vacuum handy and immediately started throwing towels all over to stop the flood from reaching the hardwood floors. Then I vacuumed up three tanks of water in about 45 minutes. That's about 15 gallons! Jan called Tessa to come home and help as I would not allow Jan to do anything but tell me if water was getting on the wood floors. She sat helplessly in a dining room chair. I don't want to think what would have happened should she have slipped!

Tessa baled out the washer enough that we could spin the water out while I continued to pull another tank and a half of water out from under the dishwasher, refrigerator, washer and drier. Tessa threw some soaked rugs out on the rear deck before heading back out to be with her friends. On her way out of the house, she slipped on the wet deck and landed on her purse. She was OK but broke the LCD on her camera. Some days it just doesn't pay!

The washer hose is clear plastic and is nearly inaccessible. I can sit behind the washer and then stoop low enough to snake an arm up to get the hose back on. I'd done it a year ago. This time the hose had swelled slightly and I assume that is why it came loose again. I clipped the swelled portion off to get a better seal and reattached it.

Three hours and two laundry baskets full of soaking wet towels later, the place looks like the disaster zone it was before the flood. The only thing ruined was my back from stooping over to get all the water up. Much better today.

The repair has held long enough for me to watch it do a few loads of towels this morning but I no longer trust the attachment. I've nicknamed the clamp after the NP at Bilkmore because all I need to do is tighten, tighten, tighten! It is a five-cent spring clamp I can squeeze off and on with my fingers. I'm going to the parts store to get a worm gear hose clamp to make sure this doesn't happen again.

Two good things did happen as a side effect of the flood. I was so tired I slept without an Ambien and the floors were cleaner than they have ever been. All things considered, I rather have taken the Ambien and skipped the flood.

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 46 - The Long Road to Bilkmore and Back

Jan had her second visit to the Bilkmore Neurosurgery Clinic today. This is a long one so get some coffee.

It snowed at least an inch on Wednesday in Bowling Green. Jan was fearful she would not be able to make the trip to Bilkmore if the roads were slick. I assured her the interstates would be top priority for both states. Our driveway melted off thoroughly without any help so I knew the interstates would be clear. We did not have any trouble reaching Bilkmore. The problems always start AFTER we arrive.

The double whammy of sinus infection and antibiotics had upset her stomach more than on Tuesday. She didn't eat much on Wednesday and I was concerned about her. She still wasn't very hungry this morning and was afraid to eat much before traveling. All I could get down her was some toast and jello. We did manage to get her hair washed without being dizzy which alleviated a lot of her anxiety. She was worried but we got through it. After the visit she was hungry and we got a Wendy's burger. So far, so good!

I gave her a pain pill, the first in three days, before the trip to Nashville. They tightened the pins and I'm sure she'll need a valium soon. I've come to the conclusion that the pins, once tightened on Jan 5th, shifted the entire halo around her head up by about a quarter inch. All of the pins have an opening below them. Yet again Dr Sloppy has demonstrated his lack of experience by doing a poor job of selecting sites! This may be accepted medical treatment but it is barbaric.

Jan says it feels like the halo gained a few pounds after tightening. When they tightened it, she could hear the bolts crack when the torque wrench reached the torque value. I can only imagine what if feels like and I don't think I'd like to experience it.

My sister, the nurse, told me about filing a complaint with the state medical board against Dr Sloppy. I found the form at the TN Medical Board website and am filling it out. It probably won't do any good but I'm going to put it down on paper. It is the least I can do to repay him for all the lovely work he did on my wife. His dedication and attention to detail... OK, you can see right through my sarcasm, can't you?

This picture was of the whiteboard in the exam room. The people that schedule these things told us to get there a half-hour early to get the x-ray. I knew they were lying because I could hear them speaking! We arrived at 11:18AM, were signed in and all paperwork filled out by 11:21AM (they documented it as that time) and then we had to wait 20 minutes for the shuttle. They sent us to the main x-ray lab but they were backed up again and wanted us to go, literally, 300 yards down the hall to the other x-ray lab. I went off on them!

A nice lady at that x-ray lab got Jan a wheelchair and even rolled her down with me trailing her coat and essential travel gear. She asked something about the x-ray and I let her know I'd never be back to Bilkmore once we were done. They had done nothing but jerk us around from the very first ER visit and I was not happy. After we reached the other lab she went and found a director and he had a little meeting with us.

We expressed our displeasure with the whole series of events and he said that was not the Bilkmore way. He agreed that 13 days was not very quick turn around for a call to a nurse. He said we should have heard back from the patient advocate since it had been a full month. He also said he would let the chief of neurosurgery know and there definitely would be something done. He stated this was a top priority with Bilkmore. I hope he is right and I'm going to be sending the medical board complaint in tomorrow's mail.

The following picture was on the wall of every exam room. Kind of ironic considering the difficulty we've had with everything Bilkmore. I do not believe we've had excellent care. I don't believe what Jan has experienced qualifies as adequate care. Guess what number I'll be calling once we get an appointment?



We finally arrived back at the clinic around 12:40PM and it was almost 1:00PM before the nurse practitioner arrived and she left almost immediately saying she had a meeting! She left us with an RN that had never tightened a halo and she acted intimidated by it. I was just about to tell her to stop when the NP returned and said the meeting would have to wait.

She told Jan the pins were tight but I watched her turn the first pin, the left front one nearly a full turn before it clicked. She started with that one the last time and turned it a half-turn then. That is not an indication that a single pin is loose. It is an indication that the first one tightened will always be the loosest one.

For instance, think of a bicycle wheel with spokes. If you only had four evenly distributed spokes and they are even the slightest bit loose, tightening only one to a specified value will make the others tighter and shift the hub, in this case Jan's head, from the center. No mechanical skills at all with these people! No wonder the pins are ripping the flesh.

Then, when she tightened the lock nut she didn't hold the pin while torquing the lock nut. If you do not hold the pin while tightening the lock nut the torque value is invalid. It will most likely be tighter due to additional torque on the lock nut. Very poor technique and bad assembly procedure. I'm way more precise with my valve adjustments than they are with the human body! I kept my mouth shut for Jan's sake, despite my desire to scream.

The NP said the spine is still in alignment and we are doing a good job of keeping the pins clean. What's new? I'm angry and frustrated, not incompetent!

I let Jan do as much of the talking as she would and could. If there was resistance to Jan's wishes, I piped up with a more outrageous demand and made her seem quite reasonable. The NP/voodoo witch again said the vests never fit well and to just take it. Could she care any less? You know what? If you don't try to improve the fit I can guarantee it never will fit properly! How would you like to wear an off-the-rack suit not quite your size for three months without even attempting to tailor it?

Jan asked to have a CT scan done in Bowling Green on the next visit and the nurse started saying it wasn't time since this was only her second visit. I quickly informed her it was 7 weeks and she had previously said we could have had a scan on this visit if we wanted. I strongly (maybe loudly) voiced my opinion that we wanted a CT scan on the next visit and we wanted to get it in Bowling Green! All of a sudden the NP is afraid of subjecting Jan to too much radiation! Wow, what about the four full scans and two neck and two head scans she had on 12/14/2008 when Bilkmore could have used the scans from the Medical Center if radiation is a major concern? Sounds like she's using a straw man argument to me. She is going to get one less scan now than she would have previously.

She then started saying the accident was 12/14/2008 and she could not get a CT scan before 3/14/2009. I corrected her by telling her that 12 weeks is 84 days and three months is 90 days, a week longer. The NP sent the nurse after a calendar. Mind you I've calculated it out several times and have a reminder every Sunday of the week count. She was arguing with me but agreed once she used a calendar. Twelve weeks put it at 03/09/2009.

Jan turned upon the NP's sympathies to explain that we left at 10:00AM and it was now 1:30PM and would be closer to 3:00PM when we got home. Five hours for a "simple" office visit is a long time out of the house for a halo wearer. Surprisingly, she agreed after a brief refusal. I don't think they like working Mondays so she agreed to March 5th or 6th and we would need the scan on the previous day from Bowling Green. A week later than I hoped but not March 14th!

Then, the NP said she would be in a collar for six weeks and she could not take it off for anything but a shower and even then to not move her head. I've read literally a dozen accounts of people having this injury and wearing a halo. Some only wear a brace to strengthen the neck muscles and some don't wear one at all. Nobody I've read an account of has worn one for six weeks without removing it for anything but showers. The NP even said to use two, one for showers and another to change into after. You can be assured I will be diligent in getting the correct answer despite the NP's statements.

To top it off, she will NEVER see the actual neurosurgeon that is on her records. He isn't even in the same building!

If it isn't healed after 12 weeks, it isn't going to heal. My reading of studies shows that most people wear a halo for 8-12 weeks, depending on age and general health. Most CT scan studies show that most healing occurs between the fourth and eighth weeks with minimal additional healing occurring between the weeks 8-12.

Bones heal much like cuts. A scab forms to cover the damaged ends. Jan's break is deep into the cancellous bone. That's the soft spongy part that has all the blood supply. It is analogous to the flesh under your skin. The two sides of a fracture grow together much like your skin closes the gap in a wound. The cortical or hard bone covering is like the outer skin.

Right now and ever since the accident Jan has been getting a minimum of 100% of the daily recommended allowance of calcium and vitamin D. She hasn't had any NSAIDs because they reduce inflammation, which is the bodies reaction to an injury. Reducing the inflammation retards the bodies natural healing ability. Tylenol and narcotics do not have this effect.

I know, I read too much but when I feel I'm getting better information from the internet than from the person treating my wife, especially when I seem to be getting a consensus, I just do not trust the care she is getting.

Day 44 - Sleeping When You Can't Lay Down

With the sinus infection and the inner ear problems, Jan can't lay flat or the room spins so fast it makes her sick. The dizziness medication doesn't completely alleviate it so we can't wash her hair the usual way until that clears up. It may take 10 days for the antibiotic to resolve it. She did not have much of an appetite yesterday due to nausea but she did eat and take all her meds. She even ate some chicken and rice for supper.

Someone suggested shaving cream to wash her hair and then rinse it out with a damp washcloth. I'm going to be the guinea pig on this since I can always take a shower and if it makes hair fall out, at least I'm not wearing a halo and I can wear a cap! I'm waiting for my hair to dry to see if it looks nasty or just oily.

She is sticking her tongue out at me in this picture. She's been colder than usual, probably related to the infection although she never ran a fever. This is how we keep her warm at night.



The lift chair controls are under the blankets and I have another blanket draped over the halo to keep her head warm. There are also small heat packs you can't see on each side of her neck. Those muscles are always tight and always bothering her. The little TV tray to her left is where she keeps her cell phone, TV remote, a drink, extra medication and the gas logs remote if she gets too cold. She can't see any of it and has it laid out where she can find it by feel.

Despite the awkward sleeping arrangement, she slept pretty well last night on only one pain pill and one valium. That was the only pain pill all day! At least her stomach is settling down. She had bacon and waffles for breakfast and her blood sugar was only 96.

Anyone local to BG knows we got an ice storm overnight. Trees were down across the road and schools canceled. I just hope it all clears up by Thursday morning when Jan has her next appointment on day 46.

Day 43 - Complaint Letter

Late Addition:
Jan thinks the below is a little harsh but I have copies of the documents in question. If I have proof, it isn't being harsh, it is an opinion based on the previous six weeks of experience. Jan also asked me not to mail the letter until after her next appointment on Thursday.


After six weeks and only one visit, I finally printed out the complaint letter. I believe the nurse committed fraud when she filled out Jan's FMLA paperwork because it clearly states under Number of Visits: 10 outpatient visits. How can we get nine more visits in with her current 3-4 week appointments?

On my form for FMLA, she wrote "weekly visits to neurosurgeon radiographic studies, halo tightening, medication adjustment, skilled observation intermittent." I think she blatantly lied, to put it bluntly. She has never had any intention of seeing Jan weekly or even every other week.

The Patient Rights document they have up on their website is so much lip service. So many things were not adhered to on this document that it literally isn't worth the paper it would take to print it.

Note that the bottom of the middle column has this text. This had better be true because the level of care could not fall any lower short of refusal to continue treatment.

You and your family/guardian have the right to
express dissatisfaction regarding the quality of
care without jeopardizing future care.

Day 42 - Six Weeks and Counting

Six weeks today have elapsed since the accident. We are definitely at the halfway mark and maybe a bit beyond. It seems like only yesterday I was standing over my injured wife, her head bleeding and me still trying to get a cell phone signal to dial 911. Ten hours and two hospitals after that she was in the halo. Twenty hours after the accident we were home again from the south instead of from the north. Twenty hours and $36,000 in bills! Reality has set in.

Jan has a sinus infection and that is what is causing her to be dizzy upon laying down. We've got some antibiotics, again! The doctor also gave her a prescription for the dizziness so hopefully, she will be able to get her hair washed again soon.

We stopped at a bike store on Saturday to try and find some of the little mirrors they put on helmets to see behind them. It would have worked great but the mirror attachment is too narrow for the width of the halo. Just our luck. We might try the other bike shop in town to see what they have.

Warning: This picture may disturb some people. It is reduced in size to obscure the detail. Click on it for the full-size image.

I have an extra pin that was left in the bag the halo came in. I placed it in Jan's halo ring near one of the existing pins in her forehead. This may help to illustrate how this thing is anchored to her skull and the depth of penetration through the skin.



Notice that the entire spike portion is in her skull and one-third of the remaining unthreaded shank is in the skin. This is what we clean around at least twice a day at all four corners of her skull. You can see the indention in her forehead. Anyone think this is fun?

Day 41 - Pictures from the Luncheon

Here is a picture of the whole family at the Kentucky Building after attending Tessa's recognition luncheon. Jan looks pretty good, don't you think? If you could not see the bars, it would not be noticeable at all.



Jan introduced her to a few people on the hill and Tessa was able to speak to several Western people that are involved in the Honors College. She is very interested in journalism, political science and especially studying abroad.



We learned a valuable lesson yesterday. Jan has some protein powder and we tried to make a yogurt smoothie with extra strawberries to help her get some calcium in her diet. It pretty much tore up her stomach for most of Friday morning until after lunch. She's all better now.

The other bummer is she is getting dizzy any time she is on her back. Guess how we wash her hair? On her back! It was a good thing the shower attachment for the tub worked out. We washed her hair in record time.

She thinks the dizziness may be related to sinus pressure, possibly related to a sinus infection. With her history of PSVT, she is not wanting to take a decongestant. She was been putting ice and heat in alternating sequence on her face and head to try to relieve the pressure. A trip to Urgent Care may be in our future.

Day 40 - Tessa's Luncheon Recognition

You may have noticed I placed a count down timer on the right margin. It may be a bit optimistic but we have a goal! Bilkmore will surely screw it up but I have a workable timeline in place.

Day 39 began early after Day 38 ended with Jan trying the bed for a second night. At 4:30 AM when nature called, she could not get situated back in the bed so she went back to the reclining lift chair. Setbacks are depressing. Now she has sworn off the bed for the duration.

Jan slept well last night back in the chair by just taking a single pain pill and a muscle relaxer pill. She did wake up cold and put her heating pad on her feet but other than that, she didn't require any additional pain medications after bedtime. It is now 6:30 AM and she had enough sleep to feel OK about going to Tessa's luncheon.

Speaking of the luncheon, today is Tessa's luncheon with the WKU President. I'm glad she was OK with her mother attending, halo and all. WKU has bent over backward to accommodate Jan. They are allowing her to park in the circle drive right in front of the Kentucky Building so she won't have steps and such to deal with. We are thankful for that. The event hasn't happened yet but I'll update later if anything interesting transpired.

I've been looking over the medical bills in my spare time. The actual CT scans I have on CD and the billable scans don't all add up. I'm trying to figure out what is what.

The hospital charged for a thorax, abdomen and pelvis scan but it is one continuous scan. Most places charge $3,000 for a full-body scan and they charged $2,300 times three for that one. Then they charged for a cervical spine, thoracic spine and lumbar spine scan that looks like the exact same scan to me. Again they billed it as three scans. I think they are used to insurance companies paying blindly and they are double-dipping. The total for CT scans alone was $14,500. The Medical Center in BG did one whole scan for $1,850 and a head scan for $1,400 on the visit two hours before Bilkmore did the exact same thing.

Based on my reading, she was exposed to the equivalent of 15 years of background radiation (three for each scan) in just four hours. Annual exposure to radiation should be limited to 20 mSv per year. She got about 10 mSv in the four hours between Med Center and Bilkmore CT scans on Dec 14th. I don't know that it is terribly harmful but it would seem they should have sent the scans with her to Bilkmore and at least looked at them first. Certainly, one more x-ray and one more CT scan will not put her over the annual limit, especially if you are creative and count the accident imaging as 2008 exposure. All other imaging is taking place in 2009.

If there is a next time, though I hope it never does, I ride in the ambulance and arrive with her. I hope it is the same if I'm the one injured. Too bad education always comes too late to help the ones you love. I hope some of you are learning from this. I won't say that makes it all worthwhile but I wish I'd have stumbled upon something like this prior to our accident.

Even though it will be paid by insurance, I'm motivated to keep them honest because they charged for a total of seven CT scans when they actually only ran her through the machine three times tops. If I can be the one that holds their feet to the fire and makes them accountable, I'm going to make it my second priority in life after Jan.

This is yet another reason I want to have her next scan in Bowling Green. The idea is that if we can get the CT scan on Wednesday afternoon and then go to Bilkmore with the scans in hand, it will be a shorter day. Knowing Bilkmore, it will be a bigger pain to try this than it should. I'm going to be adamant that they allow us this as it should be us, the ones paying, that determine how our money is being spent and the course of treatment. It isn't the nurse's body, it is Jan's that is being treated.

I've still not ruled out requesting a meeting with the hospital administrator. I've begun drafting a letter to him. I just need to research who to address it to. There is an address on the web page but I suspect it is about as useful as the patient advocate, which we've heard nothing back from. Probably a futile thing but if we don't complain, who will? If enough people complain, word gets around and then change will happen. I truly believe one person can make a difference, good or bad. I certainly will not recommend anyone going to Bilkmore and falling victim to similar treatment that we have experienced.

Day 38 - Night Without Pain Pills

Here we are at day 38 with 36 to go. We are halfway if the CT scan is on Feb 26th and shows sufficient healing! The end is in sight.

Day 36 was the first night she tried to sleep without the time-released pain pills. She slept OK but not the whole night. The stiffness at the lower lumbar near the pelvic junction is still a problem. The majority of pain has moved to her lower back where we suspect the lack of a proper fit on the vest is causing secondary pains that have nothing to do with the accident. These pains only developed after about day 30.

She can lay on her left side but not her right due to terrible neck pain. Again, this thing is not immobilizing her neck like it should. In my opinion, pain is an indication of stress due to a lack of immobilization.

Day 37 was the first night she tried to sleep in the bed with pillows propping up her back and head. There was some success but she woke up as stiff as ever, especially in her neck. She can get out of bed by herself but I'm not sure we've found the solution yet.

The pin sites are looking better after several days of applying sparing amounts of Neosporin. I clean them completely of any old ointment at night to allow them to air and then apply a fresh amount in the morning after the peroxide cleaning. This has been keeping the scabs from caking around the pins. I read and agree that we do not want the skin to grow to the pins and start trying to cover them. They are not permanent and we want no adhesion when they come out. The one will most certainly leave a pencil eraser sized scar. As she says, "That's why I have bangs."

Another interesting development is the half-dollar sized bald spot on the back of her head where she actually contacts whatever she is leaning or laying on. No other part of her head can make such contact so this single place takes all the contact stress of her head and the extra weight of the halo.

Things have progressed well through the first four weeks. At this point, we are a bit stagnant. The improvements come slower now and the changes are not all good, such as the low back pain. Things aren't bad but they certainly won't be great until the halo comes off. I suspect this is as good as it gets until that day. Then we start a whole new phase with the neck brace and physical therapy.

Other than walking in stores, I can't get her to do much exercise. She had me get the two-pound weights shortly after the accident but she's yet to use them. I know she reads this. Perhaps it will incentivize her to use them to strengthen her arms and upper body a bit. Her weight limit is five pounds in case anyone is questioning the wisdom of this. The nurse said she could do this as well.

We went looking for some long sleeve v-neck t-shirts. Colors would be good as the joke is what color shirt do you want today, white or white? So far we haven't found any. We can get long sleeve regular t-shirts or v-neck short sleeve t-shirts in colors but not both long sleeve and v-neck, white or colors.

We settled on supporting my company by buying some jersey shirts, one with black sleeves and one with red sleeves. Not being v-neck means we will have to slit them a bit deeper down the back but it will work out. She says she hates cutting up a perfectly good shirt but it is nothing compared to what the halo costs. In relative terms, it would take a thousand shirts to come close to the cost of the medieval torture device modern medicine has concocted.

Day 36 - Sleeping in a Lift Chair

It is now day 36 in a halo for Jan. Only 38 more to go, maybe less if the appointments work out to her advantage. Maybe more if they don't.

She is still sleeping in the lift chair loaned to her by her dean. She has not slept in a bed for the full 36 days. This is hard on her because she is a natural side sleeper. I'm trying to convince her she can sleep in her own bed with pillows propped around her body and head with a gap for her shoulder. That should keep any pressure points off of her arm and still allow her to log roll off the bed. Worst case scenario, she wakes me up and I help her. That's what I'm here for.

As handy as the lift chair is, it pretty much locks you into a position for the night. She was on the love seat while I sat in the lift chair. I drifted off to sleep for an hour, maybe two, and woke up stiffer than a board. I don't usually get stiff or have that kind of issue. No wonder her neck is so tight in the mornings. We apply heat to her neck every night and every morning to help ease the tension in those unused but stiff muscles.

Between the small reheatable bean bag type packs our dental hygienist gave us and the extra padding I clipped away, the little packs fit perfectly between the collar of the vest and her neck without a lot of extraneous shifting and fishing them in and out.

Her church sent over a full lasagna meal with salad and dessert for a Sunday meal. With all the gear she has on, eating is sometimes a problem. Since it naturally rests on her lower rib cage, she gets full quickly and then experiences gastric distress if she eats as quickly as a normal person. One of the side effects of the most powerful pain medication that she takes is the slowing of the gut. Peristalsis becomes sluggish and that exacerbates the condition. That lasagna was very good and she had to go rest after eating.

While Jan's niece, Emily, was visiting, I took the opportunity to partially reassemble my 39-year-old muscle car. It has been in some form of disassembly since Thanksgiving. I ordered parts before the accident and they arrived mid-week when we returned home from Bilkmore. It isn't finished but it at least has the steering gear reassembled.



Today is MLK Day and our daughter is off. Even though she won't be up before noon, she is in the house and Jan is having a good day so far. It is snowing but I have a 4x4 truck and I am going to work for a while just to get some things done that need on-site attention.

Day 34 - Modifications: Phase II

It is now almost five weeks of 12 down. The next appointment is at seven weeks, three days. We should be looking at the CT scan at the visit after that and, hopefully, the halo coming off. With any luck, she'll be out of it by Feb 26. Keep your fingers crossed.

After trying to find something that will fit over the halo-vest to look a little more dressy, I decided it was time to be a little more aggressive with the removal of nonfunctional fluff.

Here's the lamb's wool I removed from the vest. This is about the amount of fur I get off my dog when I shear her for the summer.



It really took a lot off her shoulders. She doesn't look so much like a linebacker. We haven't tried the clothes on yet but they can't fit any worse than they did before the modifications.

Here's the old picture for comparison with the modifications completed. She's not in a picture-taking mood so the look says it all. I'm not sure but I think the front bar (her left) on the right side of the picture has slipped down! So much for stabilization. A halo is only 75% effective and a hard collar is about 50% effective. I'm going to take another one in the same place, in the same position to make sure the bars are not shifting.

Jan's niece came down from Frankfort for the weekend and some good friends came to visit with pizza! She is pretty worn out tonight and went to bed pretty quickly at 10:00 PM.

Day 33 - Two Days In A Row

Two days in a row we encountered other people that have had a brush with halos. Thursday, while shopping at Kroger, a woman kept staring at Jan on the way in.

She finally approached her and said, "I'm sorry to stare and I don't mean to bother you but my mother-in-law is in a halo and I wanted to ask if you found a good way to dress?"

We told her about the v-neck shirts and the slit down the back. She was grateful and we all lamented the lack of a support group for halo users and caregivers. No person could possibly wear a halo without a support person.

On Friday, we were in Kohl's with a mission to find something Jan could wear to Tessa's WKU Presidential Luncheon. A man we've traded vehicles with since 1997 was in the store. We spoke to him and he said he knew what she was going through. Sure enough, 12 years later, I finally noticed his pin scars.

At least we are seeing that others do survive this, despite the medical profession's best efforts to make it nearly impossible to remain sane and healthy.

We finally, after two days of trying, got an appointment back at Bilkmore for Jan 29th. We still have to do x-rays at Bilkmore but they assure us that it will not take long. The appointment is at noon and they say we only need to be there 30 minutes early to get the x-rays. If this goes poorly and turns into another seven-hour day I'm going to demand they allow us to get the images in Bowling Green because seven hours out of the house in a halo is sheer torture!

Despite the myth of the halo's immobilization, it does not prevent movement of the cervical (neck) vertebrae. Jan's neck pops all the time. Getting into the car on Friday caused something to cause her great pain. She says it feels like her neck shifted and is pinched. I'd call the nurse but it will take them the weekend plus two days to just tell her to take more pain medications. The vest is also causing pain in her lower back around the lower lumbar area.

The pins are looking better after Jan called back and we finally got them to look at the picture I uploaded. They said it was normal. I would know how? It wasn't like they gave us any instruction or guidance. Oddly enough, the rear pins that I was afraid would become infected because of the unshaven patches and the ground in hair look like the day they were put in.

The front pins looked the same from day one to day 22, one day after tightening, when they broke through the skin and opened up a slit in her forehead. They've both broken through now and when they finally called us back, wait for it, two days later, they said use a triple antibiotic like Neosporin. After cleaning them three times a day, alternating between hydrogen peroxide and Neosporin, they look as good as can be expected of a recent, to-the-bone gash. The scalp cuts she had were not this deep, just longer.

I swear these people have done her, and to a lesser degree me, a great disservice. They have done absolutely the bare minimum, maybe less, to get her through this and not a thing more. When it takes six days to get a nurse to call you back, that's beyond ludicrous. Maybe I should be grateful that we normally have a 48-hour turnaround on calls? Are my expectations too high?

I'm going to have tattooed on my chest the following:

If I'm not dying, I want a second opinion!
DO NOT TAKE ME TO BILKMORE No residents allowed to touch me!

That was not a joke! Maybe I'll have a custom medic alert bracelet made instead. I hate needles. Perhaps we will soon have an implantable RFID chip available that is tied to our medical records, a living will and specific orders. Should I start such a service and retire on the proceeds?

Day 31 - Seventh Day on Antibiotics

For a refresher, here's the pin site as I found it last Wednesday.



This is the same site one week later. I'm not sure I see any improvement. Just as much redness and more scabbing.