Waiting
It seems that five or so years of knowing that things would come to this does not make it easier when things actually come to pass. Then the hip fracture happened and I knew that the situation with Jane would accelerate faster than we could image.
As I write this, Jane is laying in a bed in a Hospice facility. Monday morning brought quite few pre-dawn phone calls that cemented the feeling that she wouldn't pull back from the near death experience this time.
First, a phone call around 5:30 to make sure that they still had my approval for the
debridement. Of course you do, she doesn't stand a chance without it. Her body is in no shape to fight off the Acinetobacter, so this might give her a chance. Two more calls to make sure that transfusing blood was okay. Then another call to tell me the surgery was off because her platelets were too low.
Even in my sleep deprived stupor, I knew that a body that switches from extremely low platelets to one with far too many back to extremely low again is tired of the battle. Her organs had lost the ability to regulate themselves. It was a bad sign in a string of bad signs.
When I had woken up properly and dropped GameTeen at school, I called the nurse assigned to her and asked what they were going to do, now that they weren't going to do the debridement. "Oh, Dr. M came in and said the debridement has to be done. We have to take the risk of doing it." I asked if she was still in post-op and found that they do these procedures in-room under local anesthesia. She was several hours past surgery and bleeding more that is normal, so they were applying pressure and would be applying a wound vac shortly.
I requested that Dr. M call me, which he did a few hours later. "We did the procedure, but she's still bleeding." he started. He seemed to be reluctant to tell me that her drug allergies and heart issues really limit is treatment options. I explained what we've seen: numerous courses of antibiotics really limited what be used on her, and the tigecycline he has currently prescribed really looks like his only choice, despite it being bad for Jane.
I reminded him of our conversation two weeks ago, in which he'd asked me if Jane had a DNR and asked his opinion if as proxy, I should complete one now. He laid the cards out on the table, that a patient like Jane with kidney failure, heart failure, and respiratory failure doesn't usually bounce back from something like this. Then we talked about the fact that Jane thinks it's 2007 and he mentioned well yes, the dementia seems to be pretty advanced, too. He was matter of fact about something that prior to the hip fracture, was not really a player in her situation, as no doctor had ever mentioned it.
Our talk moved to the fact that more than anything, Jane wants to go HOME, she wants to be able to get on her scooter and go where she wants, when she wants. The fact that she will never be in a position to do that again would just devastate her. He said he'd have the DNR paperwork ready and the nurses would call me later to handle it.
So, Monday night, Ed and I went over to the hospital and signed the DNR. While we waited, I mentioned to Ed my wonder whether they'll continue to treat her on this unit or move her to Palliative care. We both thought that with the infections, they'd leave her in place.
Yesterday morning, as I was bringing Chef to school, my phone rang in the car. I returned the call as soon as I noticed the hospital name on the caller id and Dr. M
tells me he'd consulted with Palliative care. He hands the phone to a nurse from that unit and we talk about how she's made some inquiries and found a bed in the local Hospice facility. Would we be interested in moving Jane there? (after going into a two minute monologue about Hospice I didn't have the heart to interrupt.)
An hour later, we were at the hospital again, waiting for the nurse from Hospice. In just the past few days, Jane's experienced a rapid fall off. When we arrived, she was being bathed, which normally wakes a patient up, but she was sleeping to beat the band. Nothing Ed did got a rise out of her. She spoke in her sleep, but it was unintelligible. Her breathing was labored at times, despite the oxygen cannula.
Then we met from a nurse from the Hospice. She was dressed in a lot of lavender and very upbeat. I thought that if Jane wakes up and sees her, she'll probably be raving about her purple butterfly earrings. We fill out the paperwork and have a good conversation. She asked about Jane's favorite foods and we laughed that if a diabetic shouldn't eat it, Jane will definitely want it. Ultimately, their goal matched ours, that Jane be free of pain and comfortable.
She was transported yesterday afternoon.
As I write this, Jane is laying in a bed in a Hospice facility. Monday morning brought quite few pre-dawn phone calls that cemented the feeling that she wouldn't pull back from the near death experience this time.
First, a phone call around 5:30 to make sure that they still had my approval for the
debridement. Of course you do, she doesn't stand a chance without it. Her body is in no shape to fight off the Acinetobacter, so this might give her a chance. Two more calls to make sure that transfusing blood was okay. Then another call to tell me the surgery was off because her platelets were too low.
Even in my sleep deprived stupor, I knew that a body that switches from extremely low platelets to one with far too many back to extremely low again is tired of the battle. Her organs had lost the ability to regulate themselves. It was a bad sign in a string of bad signs.
When I had woken up properly and dropped GameTeen at school, I called the nurse assigned to her and asked what they were going to do, now that they weren't going to do the debridement. "Oh, Dr. M came in and said the debridement has to be done. We have to take the risk of doing it." I asked if she was still in post-op and found that they do these procedures in-room under local anesthesia. She was several hours past surgery and bleeding more that is normal, so they were applying pressure and would be applying a wound vac shortly.
I requested that Dr. M call me, which he did a few hours later. "We did the procedure, but she's still bleeding." he started. He seemed to be reluctant to tell me that her drug allergies and heart issues really limit is treatment options. I explained what we've seen: numerous courses of antibiotics really limited what be used on her, and the tigecycline he has currently prescribed really looks like his only choice, despite it being bad for Jane.
I reminded him of our conversation two weeks ago, in which he'd asked me if Jane had a DNR and asked his opinion if as proxy, I should complete one now. He laid the cards out on the table, that a patient like Jane with kidney failure, heart failure, and respiratory failure doesn't usually bounce back from something like this. Then we talked about the fact that Jane thinks it's 2007 and he mentioned well yes, the dementia seems to be pretty advanced, too. He was matter of fact about something that prior to the hip fracture, was not really a player in her situation, as no doctor had ever mentioned it.
Our talk moved to the fact that more than anything, Jane wants to go HOME, she wants to be able to get on her scooter and go where she wants, when she wants. The fact that she will never be in a position to do that again would just devastate her. He said he'd have the DNR paperwork ready and the nurses would call me later to handle it.
So, Monday night, Ed and I went over to the hospital and signed the DNR. While we waited, I mentioned to Ed my wonder whether they'll continue to treat her on this unit or move her to Palliative care. We both thought that with the infections, they'd leave her in place.
Yesterday morning, as I was bringing Chef to school, my phone rang in the car. I returned the call as soon as I noticed the hospital name on the caller id and Dr. M
tells me he'd consulted with Palliative care. He hands the phone to a nurse from that unit and we talk about how she's made some inquiries and found a bed in the local Hospice facility. Would we be interested in moving Jane there? (after going into a two minute monologue about Hospice I didn't have the heart to interrupt.)
An hour later, we were at the hospital again, waiting for the nurse from Hospice. In just the past few days, Jane's experienced a rapid fall off. When we arrived, she was being bathed, which normally wakes a patient up, but she was sleeping to beat the band. Nothing Ed did got a rise out of her. She spoke in her sleep, but it was unintelligible. Her breathing was labored at times, despite the oxygen cannula.
Then we met from a nurse from the Hospice. She was dressed in a lot of lavender and very upbeat. I thought that if Jane wakes up and sees her, she'll probably be raving about her purple butterfly earrings. We fill out the paperwork and have a good conversation. She asked about Jane's favorite foods and we laughed that if a diabetic shouldn't eat it, Jane will definitely want it. Ultimately, their goal matched ours, that Jane be free of pain and comfortable.
She was transported yesterday afternoon.
Comments
I am sending strength from downunder while you sleep. xxx