11 Weeks today! Day 77, three to go. The ending to this book has not been written but this chapter is nearly over.
I've been doing what I usually do late at night, reading. This time I'm reading up on doctor-patient relationships. Jan has the right to be an integral part of her treatment. So far she has been treated like a passive bystander. I've printed the patient's rights and responsibilities information and will be taking it to the appointment with us. If she is given any flack over her requests, I'm going to show them, in their own black and white document, where her wishes must be considered equally. So far, I would have to say I do not believe these people are challenged very often and certainly not very aggressively.
Speaking of aggressive, I've been accused of being very aggressive about my wife's treatment. To those critics, I ask what you would have done differently if your loved one was in a similar situation? I certainly have asked myself that many, many times. There are certainly things I could have done and should have done differently.
If we had been fully informed of the consequences known to be associated with halos, I'm pretty sure that other options would have been thoroughly discussed before this thing was put on in haste. Pin loosening is the most frequent problem followed by site infection, neither of which are pleasant. Nobody described this vile thing to Jan or I before it was assembled. The sheer shock of seeing it on a person is enough to scare someone. You'd have to agree, any time the medical world does anything in six hours, that was lightning fast compared to the first two week appointment taking three weeks and the second two week followup appointment at the six week, four day mark, only to be outdone by the third two week appointment at 11 weeks, three days!
The use of the halo in the first place is my biggest regret. While a halo might be standard treatment for upper cervical fractures, it is not the only accepted treatment. There are other options for completely non-invasive immobilizations like a minerva collar that are better tolerated and certainly have lower risk of infection since the skin is not violated. Of course there is surgery if it were bad enough, which the NP stated she would have had herself. I still can't believe she said that. How do you trust people like that? Perhaps you can see why I have doubts about the validity of the limited information we've been given. I truly believe they saw a training opportunity for a wannabe doctor and let the dog loose on fresh meat.
Did I misplace my trust in doctors? Did I put too much faith in the wisdom of others? Was I not a strong enough advocate? Should I have been an even more demanding bastard to get what she deserved rather than what they were willing to give? I tried my hardest and best with what I was given and could learn. Was it not good enough? I certainly was lacking in my ability to get her the best care she could. The choices we make limit our options.
For this trip, unless she is now a surgery candidate due to non-union, the halo will come off on Wednesday. She has actually gone backwards on pain. She went from no narcotics for a few weeks to now using multiple pills a day and the timed release one again at night. And once she starts the narcotics we have to reintroduce the additional medications that are required to keep her digestive tract functioning.
The attitude has been, "she's in a halo, she's not going any where, see you in 12 weeks." Never mind that she broke four bones in her spine and she's developing problems BECAUSE of the treatment method!
I probably could have had her seen more often but the results were so universally frustrating and pain inducing that I figured the fewer exposures to anyone related to Bilkmore was less of a chance for them to inflict misery on her. With their scheduling and appointments, it seems like they wanted to see her less than they did. At least she will be seeing the doctor for the final visit with the halo.
I really desire for her to be done with them when the halo comes off but I know it will only change the mode of torment rather than end it. The weight and rigidity of the halo will be gone but the stiffness and pain will remain until the neck muscles recovery from lack of use.
Some medical professional will eventually have to release her from the collar, although it will merely be a documentation formality since the collar is velcro rather than bolts. The whole thing is a catch 22. She can't remain off without confirmation she's being treated by the doctor but she can't return to work until the doctor releases her!
I just wish the fear, uncertainty and doubt had been this easily cleared away in the beginning instead of at the end.
Congrats, Bilkmore, you now rank lower than Greenblew on my list of places I'd die before being taken to under any circumstances, including an emergency! You can put that on my tombstone.
I've been doing what I usually do late at night, reading. This time I'm reading up on doctor-patient relationships. Jan has the right to be an integral part of her treatment. So far she has been treated like a passive bystander. I've printed the patient's rights and responsibilities information and will be taking it to the appointment with us. If she is given any flack over her requests, I'm going to show them, in their own black and white document, where her wishes must be considered equally. So far, I would have to say I do not believe these people are challenged very often and certainly not very aggressively.
Speaking of aggressive, I've been accused of being very aggressive about my wife's treatment. To those critics, I ask what you would have done differently if your loved one was in a similar situation? I certainly have asked myself that many, many times. There are certainly things I could have done and should have done differently.
If we had been fully informed of the consequences known to be associated with halos, I'm pretty sure that other options would have been thoroughly discussed before this thing was put on in haste. Pin loosening is the most frequent problem followed by site infection, neither of which are pleasant. Nobody described this vile thing to Jan or I before it was assembled. The sheer shock of seeing it on a person is enough to scare someone. You'd have to agree, any time the medical world does anything in six hours, that was lightning fast compared to the first two week appointment taking three weeks and the second two week followup appointment at the six week, four day mark, only to be outdone by the third two week appointment at 11 weeks, three days!
The use of the halo in the first place is my biggest regret. While a halo might be standard treatment for upper cervical fractures, it is not the only accepted treatment. There are other options for completely non-invasive immobilizations like a minerva collar that are better tolerated and certainly have lower risk of infection since the skin is not violated. Of course there is surgery if it were bad enough, which the NP stated she would have had herself. I still can't believe she said that. How do you trust people like that? Perhaps you can see why I have doubts about the validity of the limited information we've been given. I truly believe they saw a training opportunity for a wannabe doctor and let the dog loose on fresh meat.
Did I misplace my trust in doctors? Did I put too much faith in the wisdom of others? Was I not a strong enough advocate? Should I have been an even more demanding bastard to get what she deserved rather than what they were willing to give? I tried my hardest and best with what I was given and could learn. Was it not good enough? I certainly was lacking in my ability to get her the best care she could. The choices we make limit our options.
For this trip, unless she is now a surgery candidate due to non-union, the halo will come off on Wednesday. She has actually gone backwards on pain. She went from no narcotics for a few weeks to now using multiple pills a day and the timed release one again at night. And once she starts the narcotics we have to reintroduce the additional medications that are required to keep her digestive tract functioning.
The attitude has been, "she's in a halo, she's not going any where, see you in 12 weeks." Never mind that she broke four bones in her spine and she's developing problems BECAUSE of the treatment method!
I probably could have had her seen more often but the results were so universally frustrating and pain inducing that I figured the fewer exposures to anyone related to Bilkmore was less of a chance for them to inflict misery on her. With their scheduling and appointments, it seems like they wanted to see her less than they did. At least she will be seeing the doctor for the final visit with the halo.
I really desire for her to be done with them when the halo comes off but I know it will only change the mode of torment rather than end it. The weight and rigidity of the halo will be gone but the stiffness and pain will remain until the neck muscles recovery from lack of use.
Some medical professional will eventually have to release her from the collar, although it will merely be a documentation formality since the collar is velcro rather than bolts. The whole thing is a catch 22. She can't remain off without confirmation she's being treated by the doctor but she can't return to work until the doctor releases her!
I just wish the fear, uncertainty and doubt had been this easily cleared away in the beginning instead of at the end.
Congrats, Bilkmore, you now rank lower than Greenblew on my list of places I'd die before being taken to under any circumstances, including an emergency! You can put that on my tombstone.
That's really scary how her pain has gotten worse, not better. Pain is the body's way of saying that something is wrong. I hope that this new pain isn't happening because her neck has been re-injured.
ReplyDeleteIf it were me, I'd be taking a tape recorder to that appointment tomorrow. I'd also request a copy of her medical records, and not leave until you either got them, or you're escorted out my security. That way they won't have a chance to do a whole lot of altering.
Having said all this, you might want to ask someone else to accompany you and Jan to tomorrow's appointment. Preferably someone who isn't emotionally involved who can ask the questions you fail to think of, because you're too angy to think at all. Also, it would mean that there is someone else to take Jan home if you decide to stick around until you get a copy of those records.
just my two cents
I'm hoping it doesn't come to that. I'm hoping the doctor is more professional and doesn't make stupid remarks like the NP did about choosing surgery over a halo. My blackberry records quite well so that will be my recorder and we have already thought out a lot of questions and wrote them down, things like when can she start PT, when can she drive, etc.
ReplyDeleteAs for medical records, I have everything up until Jan 5, 2009. I can get those on the next trip easily enough with the exception of the actual records for the day we are there.
I hope it doesn't come to that either. Still, it never hurts to be prepared. Besides, Vandie hasn't missed an opportunity to make your life more difficult than it should be. I can't see this time being any different, can you?
ReplyDeleteBTW, are you sure she's going to be seen by a DOCTOR and not another sleep-deprived resident?
Yes, this time it is confirmed it will be the actual neurosurgeon that is listed on her paperwork and not the nurse practitioner. We specifically made sure of that with the clinic manager. Supposedly, he has been reviewing her x-rays and records and is familiar with the case. He is also in the childrens hospital which is a full block away from the neurosurgery clinic.
ReplyDeleteGood luck tomorrow.
ReplyDelete