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.
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.
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