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.

Day 30 - Popular (Second) Opinion

Jan is in bed (the recliner) so I can finally get the results posted. We saw the doctor in Hermitage this afternoon for a second opinion. He was very nice and made a lot of sense. He actually talked to us in an intelligent way and didn't treat us as if we were stupid. He says the break is bad but is better than it could be.

This image identifies the different types of C2 odontoid fractures. Type I generally is only treated with a collar. Type II, where the whole tip is broken, fail to heal in 50% of cases.

Jan's break is a type III. A type III fracture is when the pin and the front of the vertebrae is broken off as a single piece. It is through the body of the vertebrae, which usually heal quite well. Her's is all the way down to the bottom. He says there is less than a 25% chance she'll need surgery. Much better than a type II.

The x-ray is a frame from Jan's ER CT scan. It is a slice viewed from the front. It goes farther through the body than the typical type III in the illustration. The doctor thinks that should lead to good union (healing) of the two parts.

Jan really liked him and wished we'd have gone to his hospital to begin with. I think it has something to do with him saying young people heal well.

He was shocked they didn't shave the rear pin sites, as indicated in the instructions for the vest. It keeps the chances of infection way down. He also didn't like the particular model of vest as they are more cumbersome than the ones he uses. Imagine that, $6,300 for the Yugo of halo-vests! You can buy a good used Honda for that kind of money.

In addition, he was surprised they didn't keep her 24 hours because you are supposed to check the screws in 24 hours. He said he would have kept her for a day for observation and then she and I would have been instructed on how to care for the pins. I guess that is the problem with teaching hospitals. If there is anything requiring surgery, she won't be having that at Bilkmore!

In the end, he says they did the proper things to protect her neck but they could have been a lot better about her treatment in general. He would have done much the same thing. He also said that it might have been treatable with just a collar but he would not have done it.

We probably could have gotten him to take the case as they asked us at check-in if we wanted that. The problem was his office hours are one day a week in Bowling Green and the next slot was in March! We could have continued to drive to Nashville to see him but he recommended we stay with Bilkmore. Jan was fine with that and I suppose I am, too. At least we have some valuable information and Bilkmore is the only place responsible should there be issues.

Now we come to Jan's next appointment at Bilkmore on Jan 23rd. The NP has ordered a CT scan to "make us feel better" about the treatment. The second opinion doctor says that the only reason to order a test is if you are going to do something or change treatment. He says there is no way they are going to take her out of the halo at six weeks so why do it. I agreed and Jan is considering canceling the appointment in favor of me going to the luncheon on the 23rd with my father and Tessa. She wants to push it to the next week with just an x-ray.

Instead, we are going to see if we can just get x-rays in Bowling Green to avoid the hassle at Bilkmore with the shuttle and the extended duration between imaging and NP appointment. For a 10:00 AM imaging appointment, we need to leave by 8:45 AM. The visit with the NP is at 12:30 PM and you just know she'll be running late. At the last appointment she was 30 minutes late and the visit lasted an hour and a half. Even if we make this one shorter, it will still be at least 2:00 PM before we are done and another hour to get home makes it an all day affair.

Day 30 - Counseling and Second Opinion

Day 30, 54 to go!

Yesterday we went to see someone for counseling. I think we both have a lot of trauma related issues, me so more than Jan. We went to Sam's before my chiro appointment to get out and pick up a few things. It tires her out but she needs the exercise and to build some stamina. Another person came up to her in Sam's and said she went through a halo treatment, knew what she was going through and it gets better. The poor woman looked like she was near tears as if it brought back bad memories. It kind of tore Jan up, too!

The counselor said we are experiencing all the normal thoughts and emotional symptoms after such an experience. He recommended we see someone else that deals more with this sort of thing since he was more of a marriage counselor. We may need marriage counseling eventually but not at the moment. One of the people he recommended is a WKU person so Jan is going to contact them.

We've gotten all of our records and images together for the doctor to examine her and give a second opinion. I'm hopeful but not overly so. Realistic expectations need to be the norm.

A friend from Jan's church brought over the evening meal on Monday. It was wonderful barbeque meatballs, fixings and even an apple pie with ice cream. It is so comforting to know that everyone is praying and thinking about Jan when she really needs it. The next door neighbor is bringing supper on Wednesday. Who knows, I might actually gain back the 15lbs I lost in the first three weeks! I haven't weighed under 155 since my first year of college in 1980! All my belts are in the last hole and still loose!

I think after a full month we are starting to settle into a routine. I expect to not update but every couple of days from now on. I'll make exceptions for news that is out of the ordinary, such as the second opinion later today. You can still email Jan directly. She usually does an hour or so a day in front of the computer. It breaks up the day and gives her a reason to get off the couch.

Now, if we could just get that antibiotic finished and keep the pins clean, we'll have smooth sailing for the next seven weeks, five days.

Day 28 - Four Weeks Today

Despite it being a grim four week anniversary of the accident, things should be looking up. We are one third of the way through.

Yesterday was good in that Jan had her night guard modified by Charlotte and my mother fixed supper for us while we were in town.

Charlotte was absolutely great about staying late and working us all in. I thank her greatly for taking the extra time to get Jan squared away with her guard and being careful with the halo. She even found a couple of small bean bag hot/cold packs we could fit in Jan's collar area to relieve her tight neck muscles.

Mom made a great pot roast and fixings, including a peach cobbler! I think everyone left pretty stuffed. She also fixed the hem on some of Jan's new slip-on pants that were too long. When in a halo, slip-on clothing is a must.

We are still finding it tough to get in all four of the antibiotic pills. She wants to take a Nexium in the morning but if she has to wait to wake up, it is late in the day before the first dose of antibiotic. If I wake her to get the Nexium down so she'll take the antibiotic in half an hour, I'm the bad guy for waking her.

On the way home yesterday, we drove by the Kentucky Building and Jan showed Tessa where her and her grandfather need to go for the luncheon on the 23rd. That is CT scan day at Bilkmore. With any luck it will show some healing and give us an indication of what to expect.

If I sit quietly for too long I am still reliving the crash in minute detail, desperately thinking about what I might have done differently. It all seemed to go in slow motion as I heard the faintest of pops when the tempered glass blew out of the door, the crinkle of the windshield and then the rear window as it disappeared into a million pieces. People say these things happen so fast but the detail and clarity with which I remember it is all too real. As an intelligent person, I know I should let it go. Easier said than done, especially after only four weeks.

Day 27 - Travel to Dental Appointment

Day 27, 63 remaining if all goes according to plan.

Jan got all cleaned up and even put in her earrings for a new picture. She's even trying to smile. We will pick Tessa up in a bit and we have to get Jan suitably medicated to withstand the trip. Hopefully we can get her night guard refitted to help keep her jaw in alignment. She thinks that is part of her neck muscle problems.

You may notice her tool kit taped to the front of her vest. That is in case of cardiac emergency, they can use it to remove it for CPR or other life saving emergencies. Apparently, they do this for all halo-vest users, not just her so no need to freak out. It is standard procedure.

Both of us slept pretty good last night. That's a big improvement. Sleep is one of those things you can't catch up on. Once you lose it, it can't be gotten back.

You can see her reading glasses hanging off the front of the vest where I clipped some of the lining away. You can see her neck now instead of a head perched on a pile of wool! She needs a new pair and we'll pick some out while we are out today. Not being able to move your head makes reading more difficult so anything we can do to alleviate the strain is good.

Day 26 - Confirmation! Second Opinion

It was confirmed this evening. Jan has an appointment in Hermitage, TN for a second opinion. That will go a long way toward easing out minds. The chiropractor I'm seeing knows of this neurosurgeon and thinks he will give us an honest opinion. This should decide if, despite the less than stellar communications and complete lack of compassion, Bilkmore is doing the proper thing. Just an eight page patient information packet between us and confirmation!

On another front, today was a really good day because the night was pretty good. She had very little pain but was a little dizzy when we washed her hair. That was a first but she thinks it was the antibiotic which is the only change lately. The infected pin is scabbed over and we are trying to keep it clean. Any infection should be dying off now. The last scabs on her scalp are finally coming out. I think they are just held in by the hair but they will come out when they are ready.

After we had her all cleaned up we went to my chiro appointment. The doctor hugged her. I doubt she will be going back to him any time soon due to her injury but he really likes her. It makes me feel better to know everyone that sees her wants her to get better as quickly as possible.

From there we dropped our daughter's latest ACT scores off at the college. They weren't in the system yet and the deadline is the 15th! It helps to know some folks and/or work there.

After that we went to lunch at Buckhead. People looked but most seem to have a touch of pity in their eyes. From there we went to her office to drop off a book that another instructor will need to teach a class she isn't going to be able to handle. Her coworkers that were there were all a little shocked but glad to see her. At the end of this visit she was very tired and needed a pain pill. She only had two regular pain pills today and that was after all the traveling around. The situation is definitely being improved by a good night's sleep.

After a short nap the good people from her church brought over another really nice meal. Everyone has been so thoughtful and helpful. I don't know that we'll ever be able to thank them all. We aren't great cooks ourselves but I hope we can repay them in some like fashion some day.

A family member sent us some information on the best neurosurgery hospitals and clinics. Bilkmore isn't even rated. Mayo Clinic in Rochester, MN is the number one.

Just knowing we are making some progress is a great relief. Between that and taking another Ambien last night at 10:30 PM when she went to bed, I didn't wake up until the alarm went off at 6:00 AM. That's the first real night's sleep I've had in nearly a month.

It is time for her last antibiotic of the day. Tomorrow we go to Leitchfield for a dental appointment. This is our family dentist that we've seen forever. They are friends and are very good about working around our current situation. The greatest dental hygienist around is going to take care of Jan's teeth. She has cleaned a person in a halo before so she knows what to expect. Jan's already deciding what medicine she needs to make the trip bearable.

While we are in the metro Leitchfield area we'll visit my mother. She's got a roast on and she will hem some of Jan's new clothes that are halo wearer friendly.

Day 25 - The Emotional Rollercoaster Continues

Our daughter has an awards luncheon for being one of the top students in the county on Jan 23, 2009. WKU is putting it on and rumor has it this is a prelude to some sort of scholarship. It will be held at the Kentucky Building on WKU's campus.

As it is, I was supposed to attend with her since Jan doesn't want to go but the only appointment we can get with the Bilkmore Neuro Clinic and the prerequisite CT scan is, wait for it, Jan 23, 2009. Since the CT scan is at 10:00 AM and the meeting with the NP is at 12:30 PM, there's no way either of us can make it. We've tried to get it rescheduled and the best they could do was scans one day and see the NP another day. LOVELY! Travel is the absolute worst for Jan due to her head and body being locked together. Every bump and crevice on I-65 transfers to her head and it makes her nauseous and gives her a headache.

My dad, her grandfather, has graciously agreed to join her in my place. Tessa says she's OK with it but it breaks Jan's heart that neither of us will be with her for what should be a happy moment. I hope she understands that her mother's health and well being is a top priority and that we love her despite our inability to attend.

All of the above contributed to today being a bad day. The most minor of bright spots was the check for the totaled car. I'd give twice that if it would make her whole again any sooner. Interestingly enough, I deposited it and they put an 11 day hold on the funds. I told them I didn't care, just put the check in the bank and let me finish getting groceries! Everything pisses me off!

I think I have found a doctor that will see her for a second opinion! He has an office in Bowling Green but to see him faster, as in this coming Tuesday, we are going to his Hermitage office. The hope is that if he'll take her, we can see him in Bowling Green. At any rate, a second opinion is what I really need for peace of mind. All I have to do is fill out the new patient forms they directed me to on the web. Cross your fingers!

Jan has called the NP twice. Once on Tuesday and again today. They just won't call us back. They have abandoned us! We were reading her medical records of the ER visit and discovered she also has a T2 and T3 endplate fracture. Why didn't anyone tell us this? Is this not the most ridiculous thing you've ever heard?

The scoop on the new pain med is mixed. She took it at 10:00 PM and woke up at 4:30 AM. It may take some adjusting. She is going to try 10:00 PM again tonight and see if it results in a pattern.

Getting four antibiotics down in the day is tougher than we imagined. She hates to take them on an empty stomach so she is still going to have to take one at bedtime, empty stomach or not.

I don't know if I mentioned it before but her front (anterior in medical BS) pins have always looked like the skin on her forehead had a bit of a bunch above the pin and the skin was pulled tight below the pin. It has now self corrected by effectively ripping her forehead to relieve the bunch/tight skin. The NP accused her of holding her eyebrows up when they put the pins in and I know she did not. Dr Second-Year-Resident inflated her forehead with about 10cc of xylocaine in each pin site that swelled the skin. Once the swelling went down from the local, the skin was pulled and bunched.

I have a request from the patient. Would people please stop saying the time will pass quickly. She's desperately tired of hearing that and it does not help her spirits. It only reminds her that she isn't even to the half way point. More than once she has wished they'd put her in a coma and wake her when she's healed.

I'm a realist and not much for blatant, unrealistic optimism. My statements about the situation are deemed to be negative at times. For instance, some loony doctor in the ER told her after the halo went on that she might only have to wear it for six weeks. He must have been using the extra morphine they said they gave her because NOBODY gets out of a halo in six weeks and I told her so. Unrealistic expectations are the root of depression and I'm afraid of that now.

Yes, we are thankful she is alive, that I'm alive. We are overjoyed that she is not paralyzed and ecstatic because she should make a full recovery but that is no reason for her to have been treated the way she has. She shouldn't have to pay for living by being made miserable at the hands of uncaring doctors. It certainly doesn't instill trust in the providers.

We are seeing someone on Monday to help us work out the grief and pent up feelings left by this traumatic experience and I'm not talking just about the accident. I know I have so much anger toward the medical profession that it affects my objectivity but my gut says keep fighting because I can't depend on the professionals.

My sister and aunt, both nurses, said that the NP telling me, "Why don't you treat your wife if you can do it better!" was completely unprofessional. Trust me, I am documenting these things for future reference!

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 23, Part 2 - Planned Excursion

Jan wants to go somewhere tomorrow and I'm all about accommodating her wish to get out of the house. It takes about an hour to wash her hair, get cleaned up and a new t-shirt wriggled under the vest. The portion I trimmed away in the front and back of her neck opening was agreed to by the NP for anyone that thinks I'm being reckless. I assure you I am not doing anything to harm her or endanger her recovery. Most of the time I feel like I'm the only one that is trying to make it as fast and painless as possible. The medical people certainly have little regard for the mental state of anyone wearing one of these things. Heal the spine, damn the person!

One thing I forgot to mention yesterday. The NP and the halo expert both said the long protruding bar in the back may account for some of her discomfort when laying on her back. I doubted it because it is resting against a quarter inch of hard plastic which is then padded with massive amounts of lamb's wool. They nonchalantly loosened all the attaching points for the offending bar and proceeded to push it up. When I saw six inches more of it going up above her head, I vetoed that! She can barely get into a Honda Pilot, a very tall vehicle, with the existing height. If it stuck up six more inches she'd be bumping it and hanging it on everything in sight. You can't make a 5'6" woman suddenly have to deal with a 6' stature! I asked if I could chop it off with a cutoff saw and they didn't seem to like that idea. I'm telling you, this is a mechanical problem and these people must have never seen an erector set as children.

At any rate, her medication is doing wonders. She takes it at 8:30 PM and it knocked her out at just before 10:00 PM last night. She wakes up at 5 AM and takes a valium and rests a bit more before getting up. Once she's up and has had breakfast, she lays back down for a few hours for a nap. She is going to try taking it at around 10:00 PM tonight to see if she can sleep until 6:30 AM and then stay up.

She's sleeping so much better that she finally bugged me enough about the tingling and numbness I have between my shoulder blades when driving to go see her chiropractor. I did mention this to the GP when we had our shared visit on 12/23/2008 that it had started after the accident. I said it gets numb and tingles like it is asleep between my shoulder blades when I drive or have to have my unsupported arms in front of me. He said take advil or motrin without even touching me or seeing exactly where I was indicating. Jan says I don't complain enough. I was unaware that was a trait I needed to develop.

The chiropractor x-rayed me and did some e-stim, which is also called a TENS unit, on the first day. They put four pads on my back and the tingle of the e-stim feels just like the tingle without the numbness. Strangest sensation, indeed.

I got the results of the x-rays yesterday. My neck has lost the curve from C1 to about C4 when viewed from the side. My neck has a very slight "S" when viewed from the front. It would appear Jan's spine is in better alignment than mine! The chiropractor said it was definitely from the accident. This is just a cell phone camera shot so the detail isn't good but it is pretty obvious from all the spine pictures I've seen lately.

I also told the GP at the same visit that I wasn't sleeping much and he suggested benadryl. That was a flop! The dramamine didn't seem to have much impact either. I stopped short of combining Wild Turkey and benadryl.

Jan then called in and got me a prescription of Ambien. I took the first one last night about 11:30 PM. I wasn't really tired but I needed to get some sleep. I immediately went to bed upon taking it as it is supposed to take effect in 15 minutes. I closed my eyes and the next time I opened them I looked at the clock. It was now 12:00 midnight. I closed them again and tried to fall asleep. When I opened my eyes again it was 12:30 AM. One more time I tried to drift off and again I saw 1:00 AM on the clock. This is actually worse since I was getting midnight to 3:00 AM and then an hour between jolting awake episodes. Luckily, I was out from 1:00 AM to 6:00 AM.

Is that an improvement? Five contiguous hours is better than three but I wouldn't call it a night's rest. Have you ever had those dreams where you are falling and are jolted awake with every muscle in your body tensed as if to brace for impact? That's what happens to me constantly through out the night. My heart is racing, I have a bad feeling and I braced for impact. I do not remember the dream as much now but I suspect it is still something accident related.

Day 23 - New Medication, New Modification

The timed release pain medication let her sleep from 10:00 PM last night until 5:00 AM this morning. She took a muscle relaxer for her neck cramps then and rested a bit more. She's up and around, feeling better.

She says I'm too negative about some of the stuff yesterday and that she is OK with the results so I should chill out. I am going to trim a bunch of the lamb's wool off of the parts of the vest liner that her body absolutely cannot contact, such as the back of the neck and the V in the front. This will let her have a little more sense of freedom from the scratchy wool. Due to the way this thing works, if she could touch those areas, it would NOT be working.

It is obvious that if this halo-vest is the pinnacle of medical technology for spine immobilization, the pinnacle isn't very high. It is also quite apparent that the people designing these things have never even attempted to put one on. It looks OK but the lining and design do not match up to the stated goal of the device once applied to a human form. For $6,300 you'd think they could at least make it a more custom fit. Perhaps Apple should get into medical devices. The margins are certainly excellent. BTW, the same halo-vest in other parts of the world is only $1,200 so that's a 500% mark up!

I've trimmed off some of the lamb's wool in the front. She says it feels a little less hot and smothering. That's a good sign! I'm going to work on the back at her next bath.

Here's a picture of the piece I cut out, only about a half inch wide but it made a big difference. I will get a new picture of her when she's ready that shows how the modification looks.

Here's the t-shirt mod in case any other halo wearers or halo support persons need a visual of the process. First is the normal shirt and second is the modified item with the slit back.

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.

Day 22 - The First Check Up

It was three weeks ago today that Jan was placed in a halo-vest for treatment of her type III odontiod C2. The pain has been increasing and her pain medication has increased to double her original tolerance. The first week she was taking three pain pills but lately she has been taking five or six a day.

We've got a list of questions for the clinic visit and something has to be done. My aunt, who is a nurse and ran a home health care business in North Carolina says that if they can't do something to help her, we should contact the Mayo Clinic in Florida. She believes they can work miracles!

This is pre-visit and everything following this will be post-visit.

Day 21 - Lunch Out With Family

My father typically has a lunch at a nice restaurant for the family as our Christmas present. I'd much rather us all get together than worry about presents. It brings back more of the reason for Christmas. It is about family and isn't about blatant consumerism.

We usually do this gathering in Bowling Green as there are plenty of good places to eat. We've picked Longhorn for today's outing. My dad, to his credit, said he wouldn't have it unless Jan went along! She is still very apprehensive about going out in public but she can't stay home for nine more weeks. She has to get out and move around. Otherwise, she'd be no better off than being in a hospital bed in traction like they used to do in the barbaric days of old.

She was feeling a little sorry for herself this morning. She even threatened to not go to lunch. I'm trying to impress upon her that she has to complain to the doctors and nurses tomorrow or they are just going to let her suffer for nine more weeks. They obviously won't listen to me. I can't help her if she won't help herself at least when we go to the checkup.

Lunch really wore on her today and she is resting now with half of a valium and a pain pill. Her left shoulder and arm are really sore for some reason.

While we were at lunch, my dad and his sister recommended we check into the Mayo Clinic in Florida. She says they can fix other doctor's mistakes. Something has to be done and I'm investigating every possibility. If tomorrow goes badly, that's the next step.

Day 20 - Clarifications

Someone asked how Jan was. First, she is neurologically intact. That means all her toes and fingers work just fine. No wheelchair and no paralysis. The halo is to stabilize her neck while it heals. Today is three weeks with nine to go without divine intervention. If I can finagle her out of it a week or two early I will. We are thankful for that. Now we just need to get it adjusted so that it is more comfortable for the rest of her sentence.

She actually gets around pretty good considering she can't twist her body from the base of her rib cage up and her head is completely encased in, as she calls it, the bird cage. She can generally stand and sit unassisted but sometimes an awkward position requires assistance. Her dean loaned her a lift recliner and it has been a Godsend. Not being able to see behind you makes sitting an act of faith. The counter height kitchen table with the tall chairs are another fortuitous item. She can easily and confidently seat herself in them.

She is sleeping most nights in the recliner. She can not lay flat on her back and sleep. The couch sometimes is her daytime resting spot where she will take the pressure off her behind. She can lean over on the couch or love seat and prop pillows in such a way as to relieve the pressure of the vest for a time.

Most mornings, if they are good mornings, she will make her own breakfast. The first week was all bad mornings and she was quite helpless. She has made remarkable progress in dealing with the extra 12 pounds on her head. Worst thing is she will sometimes hit her halo bars on a cabinet door because she can't see it or doesn't realize how far it sticks out when she tries to close it.

Getting in and out of cars is quite difficult. She can't see the door frame and I initially had to guide her in and out. She's had enough practice that she can almost do it herself but I give direction to make sure she doesn't bang the halo, which hurts.

I've procured a handicap placard for the car so I don't have to drop her off at the door and run back from a parking space. She can walk but uneven ground is scary due to the tripping hazards. Steps are also a big fright. She can't see anything on the ground closer than about eight feet in front of her.

We've discovered the easy way to wash her hair. First, we thread a small towel through the back bars and tuck it in so that water will not get on the lamb's wool liner. Next, she lays in two front-to-front kitchen chairs such that her head is suspended over the bathtub. I stand in the tub and pour warm water over her scalp and wash it in a manner similar to how a beauty shop would do it. We then blow dry it to keep water out of her vest.

The sponge bath can be partially done on her own now. I still have to get under the vest for her along with the top of her forehead, under arms, shoulders and back of her legs.

She can dress herself except for the halo specific things. The current favorite is the v-neck shirts we purchased. We slit them about a foot from the rear neckline down. She then steps into them like a dress and we wriggle them up under the vest.

I'm filling out paperwork on renewing my passport. I'm thinking when this is all over we should go somewhere to try to forget the months this has robbed from us.

Tomorrow is the first visit at Bilkmore's Neuro Clinic. She's got everyone's phone numbers in case I get arrested because I don't intend for them to just push her back out without making at least some positive adjustment to her vest and her head orientation.