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.