Anyone familiar with bone infections?

sasywtch

DIS Veteran
Joined
May 16, 2008
I'm trying to grasp all the information and I do realize that the Dis is not replaced by doctor's diagnosis. For those who do not know, my 40+ year old daughter was paralyzed from the breast down in 2016. She was in a nursing home until I was able to buy a house that fit, have renovations done. This was June of 2020 (I think the stress has got to me. I'm sure it was 2020 covid lockdowns started in April when we bought the house and we finished reno's in June). Anyway, she has always had bedsores on her tush. About twice a year she is admitted to the hospital for an infection-twice for sepsis.

Fast forward to now: My daughter was admitted last week as her wounds were bleeding profusely. I thought they'd do the medicine and be out in a few days. However, they did a bone scan and found that the infection has gone into her hips and there was no way of stopping it going further. As a naive person, I assumed antibiotics helped with the infection but learning when it gets into your bones, it's a lot different. They called in pallative care and she is home now. The doctor who was rude matter of factly with her arms crossed told her she had days, weeks, months or a year to live. The most uncaring person I have ever met. If anyone ever wonders if I'm just a talker on here and not in person, I had a conversation with her outside in the hall. I told her she was inappropriate, her attitude stunk and if she ever had anything like that happen to her, I'd hope she had a more caring doctor than she had been to my daughter. After her visit to her PC doctor at UCDavis yesterday, I'm learning a little about bone infections. I'm still not exactly clear but she has her wound care nurse coming tomorrow so hoping to get more information from her. They wanted to take her off of blood thinners which would probably kill her in no time since she has clots in her legs and I understand the reasoning of the blood flow to the wounds but it's like making the decision we had to make for my mom. To do surgery for a feeding tube or let them starve. It's a terrible position to be in. Right now she is on her blood thinners and we are watching for blood flow. Anyway, I didn't know if anyone on here was proficient in bone infections or have any knowledge. I keep thinking it's like MRSA where you have to have surgery to remove the diseased area since they told us the only way to stop it would be to cut out most of her hip bones. We did go to the bank yesterday after the appointment since it was next door to get the paperwork to add her sister to her accounts. Life sucks sometimes.
 
I am not at all familiar with bone infections, but I just wanted to tell you that I am so sorry you and your daughter are going through this. As a mom I can’t even imagine how difficult of a time this is. I hope someone here has some insight for you.
 
Wow, as a nurse, I am appalled at your doctor's lack of compassion. I'm also very sorry to hear about this. What a horrible situation. Would it be worth getting a second opinion?
 
Wow, as a nurse, I am appalled at your doctor's lack of compassion. I'm also very sorry to hear about this. What a horrible situation. Would it be worth getting a second opinion?
I don't know how anybody who gets a terminal diagnosis in such a questionable way doesn't IMMEDIATELY seek a second opinion. I'm sure the OP has other more trusted medical professionals on her DD's care team to ask.
 


Osteo myelitis can be terminal if the bone infection cannot be surgically removed. However, it can also be treated with the hopes of keeping it from spreading or becoming septic again. Usually with long term antibiotics given thru PICC line or another type of central line. Palliative care providers are usually much more empathetic and caring I hope you can find anothe.
 


I’m sorry the doctor wasn’t more compassionate for you and your daughter. I’m glad you’re seeing the wound nurse tomorrow. They have expertise with these matters. I agree with another opinion. If I recall you go to a top hospital, correct? It is hard to offer more than that without having all the information, but I will be praying for you both and hope they can find something that can help her. :grouphug:
 
So sorry that you, your daughter and all who care for her are facing this.

Praying you have an angel bring you clarity and hopeful answers through the nurse tomorrow.
 
Anyway, I didn't know if anyone on here was proficient in bone infections or have any knowledge.

Osteo myelitis can be terminal if the bone infection cannot be surgically removed. However, it can also be treated with the hopes of keeping it from spreading or becoming septic again. Usually with long term antibiotics given thru PICC line or another type of central line. Palliative care providers are usually much more empathetic and caring I hope you can find anothe.
It's been a number of years, and I'm certainly not an expert, but my mother got a bone infection after her second knee replacement surgery. They hit her with super powerful antibiotics for a long time (around 4 months if I recall correctly). It did stop the infection, but also affected her hearing.
 
Very sorry to here what's going on, @sasywtch, both with your daughter as well as you as her mom. :hug:'s As suggested above, second opinion. Maybe a third. And really terrible having to have had to deal with the doctor in the hospital. So uncalled for. Keeping you daughter, you and family in my prayers. :hug:'s
 
So sorry that you and your family are having to go through this.

Definitely get a second opinion if you can. My BIL got an infection in the toe bones of one of his feet. The first doctor he went to wanted to amputate. My BIL refused and went to get a second opinion. The second doctor wouldn't even consider amputation until he tried to get rid of the infection first. The infection was taken care of and my BIL still has his foot.
 
I'm so sorry you are going through this and having to deal
with the horrible treatment.
Someone I know has a terrible bedsore and they are desperately trying
to keep it from making it's way all the way into their lower spine.
I was told that they just keep scraping the infection out, using tools
as well as a pump, and I would think antibiotics.
It's incredibly painful when they clean it out and the patient is given
a strong pain killer under the tongue.
I know the dressing has to be changed frequently.
I don't know if that info helps you at all but I am praying for you & your daughter 🙏.
 
Wow, as a nurse, I am appalled at your doctor's lack of compassion. I'm also very sorry to hear about this. What a horrible situation. Would it be worth getting a second opinion?
For those not in the Sacramento area, trying to figure out which way to explain this. Her primary care dr is with UCDavis (wonderful doctor from the midwest). She has home health through Sutter hospital and her hospitalizations, wound care, urologist, lung dr is through Sutter. Two different hospital systems. However, her UC doctor can see test results and care from Sutter which is good. Her previous crappy pc either couldn't or couldn't be bothered. Her current pc is going to order another bone scan when she is done with her antibiotics February 28. We will see how that goes from there. My understanding has always been that infections is what is most dangerous for paraplegics.
 
I don't know how anybody who gets a terminal diagnosis in such a questionable way doesn't IMMEDIATELY seek a second opinion. I'm sure the OP has other more trusted medical professionals on her DD's care team to ask.
please see my reply to the pp. We are working with another doctor. I actually said the same thing to my oldest sister when she was diagnosed with cancer. I really wanted her to go to the cancer centers instead of you have 6 months and that's it so I understand where you are coming from.
 
Osteo myelitis can be terminal if the bone infection cannot be surgically removed. However, it can also be treated with the hopes of keeping it from spreading or becoming septic again. Usually with long term antibiotics given thru PICC line or another type of central line. Palliative care providers are usually much more empathetic and caring I hope you can find anothe.
Ah, that's the name they said Osteo myelitis! I've done the picc line so would not be against that if it comes to that. I have my little tray with the instructions on it. alcohol swab, saline needle, alcohol swab, medication, alcohol swab I think I'm close-going from memory here. The pallative care doctor that came in was far nicer than the hospital doctor.
 
I’m sorry the doctor wasn’t more compassionate for you and your daughter. I’m glad you’re seeing the wound nurse tomorrow. They have expertise with these matters. I agree with another opinion. If I recall you go to a top hospital, correct? It is hard to offer more than that without having all the information, but I will be praying for you both and hope they can find something that can help her. :grouphug:
The hospital she goes to is known for their heart surgeons. They actually transferred my xhusband from Reno down here to this hospital last year for a last ditch effort. She also has UCDavis which has the best trauma unit. Thank you all.
 
I'm so sorry you are going through this and having to deal
with the horrible treatment.
Someone I know has a terrible bedsore and they are desperately trying
to keep it from making it's way all the way into their lower spine.
I was told that they just keep scraping the infection out, using tools
as well as a pump, and I would think antibiotics.
It's incredibly painful when they clean it out and the patient is given
a strong pain killer under the tongue.
I know the dressing has to be changed frequently.
I don't know if that info helps you at all but I am pray
She had something done a few months ago by the wound care doctor at the hospital wound clinic. They scraped and took two tunnels and made into one. (I'm not in the medical field so have no idea how to explain it. She would joke with you and tell you that's the benefit of being paralyzed, she didn't need to be put out or have pain killers for it. Thank you.
 
Thank you all for your thoughts and prayers. I've been kind of reading on here a little today but avoiding the other hot topics for a week until my stress level goes down some. I'm just rewatching Hallmark for mindless tv. I have a funeral to go to tomorrow morning as my best friend's little (well she's 63) sister passed away recently.
 

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