What a mixed bag of treats and tricks for our little family this, Michael’s first Halloween. The treat has been Lisa’s been stable and doing well since finishing off her course of antibiotics last weekend. No fevers, vomiting or its evil companions- aspiration and infection.
At midweek I visited with Lisa’s neurosurgeon, who, after consultations with colleagues and much review and reflection, concluded that Lisa would not benefit by relieving the small amount of pressure caused by Cerebral Spinal Fluid (CSF) reabsorbing too slowly into the body. The thought had been that a shunt draining excess fluid might help Lisa regain some of her ability to interact with us. Dr. Theodore believes that Lisa, upon closer examinations isn’t showing the kind of impairment typically caused by hydrocephalus. Dr. Theodore is also concerned about a particular risk as well. Draining CSF may cause the remaining healthy brain matter to fold in on itself tearing tiny blood vessels that could cause bleeding in Lisa’s brain. These subdural hematomas can be treated but would be a significant complication and setback that simply outweighs any possible benefit in Dr. Theodore’s view. While I know Lisa would want me taking reasonable risks to get back her ability to participate in her world, this doesn’t seem like one to me, so ‘nuff said.
Ruling out the shunt put us back on track to work on the mix of medicines in Lisa’s pump- or so I thought. We’d been on hold for infections, antibiotics and the shunt assessment but at midweek, we got our first trick of the week. Lisa’s blood pressure dropped due to her becoming dehydrated. The dehydration was a likely caused by her tube feeding being held during the day, so when she was loaded up with fluids her BP popped back up. Still, the medicine that has helped Lisa’s spasticity, clonodin, lowers blood pressure so her med mix is on hold for the time being.
This puts Dr. Theodore and his colleagues back at the plate. Lisa’s brutal muscle tone is threatening her ability to bear weight on her feet. If medicines can’t relieve the spasticity by chemically blocking the messed up signals from damaged portions of Lisa’s brain than the surgical options used before baclofin and clonodin (and still used regularly in pediatric cerebral palsy cases) are still available. Lisa will be evaluated next week to see if these may be of some help.
Tough stuff! But, again all more or less than what we’d expected. I figured Lisa’s due to begin hyperbaric in a few weeks, so that gives us some time to work through these issues to see if we couldn’t get the long hoped and prayed for breakthrough.
So, then comes the big trick: Lisa’s caregivers have decided it’s time to discharge her from neuro rehab, at least until the hyperbaric starts at the end of November. I had been assured that I wouldn’t have to worry about Lisa being moved out before then but other concerns have arisen. Mostly, the concerns are the original ones. Lisa came to the unit, not to rehab but to protect her ability to rehab, with the hope and expectation being that the baclofin pump would work its magic and we’d get to work. The result after four months has been a stalemate without significant progress, at least as measured in terms of regaining function. The continued use of restorative therapists to maintain the status quo has taken a toll on folks who’ve struggled mightily on Lisa’s behalf so if they need a break I want to at least know where they have in mind for us to go.
While we’re deep in discharge planning for home modifications and equipment acquisition, Lisa is not medically stable enough to come home. The obvious choice would be for Lisa to rejoin her old friends back up at Select Specialty Hospital, the long term acute care facility that was our first home at St. Joes from the end of March through June. The therapists and key members of the nursing staff know and care deeply about Lisa. Lisa’s doc’s here would be her docs there as well. Her trip would be in a gurney, not an ambulance.
Time for the next trick. The corporate folks at Select won’t accept Lisa back as a patient. The problem isn’t money, and she’s medically appropriate, but they’ve asserted they have the right to refuse a patient and they’re refusing Lisa, “respectfully.” I’m pretty certain I know why this has happened and I’ve reached out to folks I know in Select to see if I can do anything about this, but at least for another week or so I really won’t have anything to offer them.
All the alternatives are ugly. There is one medically appropriate facility, about which we’d heard bad things, but Lisa’s docs are comfortable with, but they don’t take our insurance. Negotiations to follow.
“… in sickness or in health…” Vows Exchanged. Lisa and Richard. 10/09/ 2004I really can’t put a happy face on this. I’d hoped to use these few weeks of anticipated medical stability to really see how Lisa could do with traditional approaches before the hyperbaric treatments start. I also wanted to concentrate on learning and acquiring what I need to care for and protect Lisa at home. Now, I’ll need to do what I’ve done in each new placement to make certain Lisa’s safe, and cared for by folks who care about her. Fortunately, I’ll be able to count on Lisa’s Ranger’s, Yolanda and the other friends and family I’ve learned to trust to do what Lisa needs.
Another sad transition happened this week I’d been putting off. Lisa’s had no stronger group of friends than her ICE co-workers. Her supervisors, Pat and Kimberly have, in a word, been super. Her federal colleagues, some, friends known to her, others we have never met, have all become family. They (along with many of our other friends in federal service) offered prayers, cards and notes of support and, to help us keep our roof over our heads, donated their own annual leave time. That’s right, while they could have used their annual leave to spend time in Las Vegas casinos, the parking lot of Hoover dam, or the opera in Tucson, these folks instead sacrificed so that Lisa will have her home to come home to.
I’ve been forced to acknowledge that whatever improvement Lisa makes, she won’t be returning to work as a trial attorney for ICE. Applying for social security disability wasn’t too hard; their standard is 5 months of disability. But as Lisa’s donated time is running out, I have to actually end her career as a prosecutor, in order to apply for her disability retirement. I’ve used the months of donated leave the way they were intended, to buy time for Lisa to prove her first neurologist who said Lisa wouldn’t ever be a lawyer again, wrong.
Now for the last trick: turns out the time for the paperwork I submitted this week is two months on an expedited track, our donated leave time will run out some time in November. Well, this one’s on me. I just couldn’t bring myself to do this any sooner. -- Richard
On the home front, Mich
ael discovered that apples are not only applesauce. Here is proof:
Michael in the last two-weeks has become a Tasmanian devil. He stands in his walker and runs around like a whirlwind. Wants to touch everything-taste everything-see everything and feel everything. He discovered that Tosh our Scottish terrier has a beard worth pulling, a water bowl worth tipping and food worth biting. His four teeth work like a beaver on everything. He loves graham crackers, Melba toast, Matzos, and expecially bananas. He wakes up smiling and melts our hearts. He continues to sleep throughout the night, loves his naps and car rides. He is an expert at charming, literally everyone he meets and gets perfectly proper adults to make funny noises and faces for his entertainment. I am so proud that Richard includes him in every one of his trips to be with Lisa, and I know in my heart Lisa feels their presence.
Michael – mlwintory@msn.com
At midweek I visited with Lisa’s neurosurgeon, who, after consultations with colleagues and much review and reflection, concluded that Lisa would not benefit by relieving the small amount of pressure caused by Cerebral Spinal Fluid (CSF) reabsorbing too slowly into the body. The thought had been that a shunt draining excess fluid might help Lisa regain some of her ability to interact with us. Dr. Theodore believes that Lisa, upon closer examinations isn’t showing the kind of impairment typically caused by hydrocephalus. Dr. Theodore is also concerned about a particular risk as well. Draining CSF may cause the remaining healthy brain matter to fold in on itself tearing tiny blood vessels that could cause bleeding in Lisa’s brain. These subdural hematomas can be treated but would be a significant complication and setback that simply outweighs any possible benefit in Dr. Theodore’s view. While I know Lisa would want me taking reasonable risks to get back her ability to participate in her world, this doesn’t seem like one to me, so ‘nuff said.
Ruling out the shunt put us back on track to work on the mix of medicines in Lisa’s pump- or so I thought. We’d been on hold for infections, antibiotics and the shunt assessment but at midweek, we got our first trick of the week. Lisa’s blood pressure dropped due to her becoming dehydrated. The dehydration was a likely caused by her tube feeding being held during the day, so when she was loaded up with fluids her BP popped back up. Still, the medicine that has helped Lisa’s spasticity, clonodin, lowers blood pressure so her med mix is on hold for the time being.
This puts Dr. Theodore and his colleagues back at the plate. Lisa’s brutal muscle tone is threatening her ability to bear weight on her feet. If medicines can’t relieve the spasticity by chemically blocking the messed up signals from damaged portions of Lisa’s brain than the surgical options used before baclofin and clonodin (and still used regularly in pediatric cerebral palsy cases) are still available. Lisa will be evaluated next week to see if these may be of some help.
Tough stuff! But, again all more or less than what we’d expected. I figured Lisa’s due to begin hyperbaric in a few weeks, so that gives us some time to work through these issues to see if we couldn’t get the long hoped and prayed for breakthrough.
So, then comes the big trick: Lisa’s caregivers have decided it’s time to discharge her from neuro rehab, at least until the hyperbaric starts at the end of November. I had been assured that I wouldn’t have to worry about Lisa being moved out before then but other concerns have arisen. Mostly, the concerns are the original ones. Lisa came to the unit, not to rehab but to protect her ability to rehab, with the hope and expectation being that the baclofin pump would work its magic and we’d get to work. The result after four months has been a stalemate without significant progress, at least as measured in terms of regaining function. The continued use of restorative therapists to maintain the status quo has taken a toll on folks who’ve struggled mightily on Lisa’s behalf so if they need a break I want to at least know where they have in mind for us to go.
While we’re deep in discharge planning for home modifications and equipment acquisition, Lisa is not medically stable enough to come home. The obvious choice would be for Lisa to rejoin her old friends back up at Select Specialty Hospital, the long term acute care facility that was our first home at St. Joes from the end of March through June. The therapists and key members of the nursing staff know and care deeply about Lisa. Lisa’s doc’s here would be her docs there as well. Her trip would be in a gurney, not an ambulance.
Time for the next trick. The corporate folks at Select won’t accept Lisa back as a patient. The problem isn’t money, and she’s medically appropriate, but they’ve asserted they have the right to refuse a patient and they’re refusing Lisa, “respectfully.” I’m pretty certain I know why this has happened and I’ve reached out to folks I know in Select to see if I can do anything about this, but at least for another week or so I really won’t have anything to offer them.
All the alternatives are ugly. There is one medically appropriate facility, about which we’d heard bad things, but Lisa’s docs are comfortable with, but they don’t take our insurance. Negotiations to follow.
“… in sickness or in health…” Vows Exchanged. Lisa and Richard. 10/09/ 2004I really can’t put a happy face on this. I’d hoped to use these few weeks of anticipated medical stability to really see how Lisa could do with traditional approaches before the hyperbaric treatments start. I also wanted to concentrate on learning and acquiring what I need to care for and protect Lisa at home. Now, I’ll need to do what I’ve done in each new placement to make certain Lisa’s safe, and cared for by folks who care about her. Fortunately, I’ll be able to count on Lisa’s Ranger’s, Yolanda and the other friends and family I’ve learned to trust to do what Lisa needs.
Another sad transition happened this week I’d been putting off. Lisa’s had no stronger group of friends than her ICE co-workers. Her supervisors, Pat and Kimberly have, in a word, been super. Her federal colleagues, some, friends known to her, others we have never met, have all become family. They (along with many of our other friends in federal service) offered prayers, cards and notes of support and, to help us keep our roof over our heads, donated their own annual leave time. That’s right, while they could have used their annual leave to spend time in Las Vegas casinos, the parking lot of Hoover dam, or the opera in Tucson, these folks instead sacrificed so that Lisa will have her home to come home to.
I’ve been forced to acknowledge that whatever improvement Lisa makes, she won’t be returning to work as a trial attorney for ICE. Applying for social security disability wasn’t too hard; their standard is 5 months of disability. But as Lisa’s donated time is running out, I have to actually end her career as a prosecutor, in order to apply for her disability retirement. I’ve used the months of donated leave the way they were intended, to buy time for Lisa to prove her first neurologist who said Lisa wouldn’t ever be a lawyer again, wrong.
Now for the last trick: turns out the time for the paperwork I submitted this week is two months on an expedited track, our donated leave time will run out some time in November. Well, this one’s on me. I just couldn’t bring myself to do this any sooner. -- Richard
On the home front, Mich
ael discovered that apples are not only applesauce. Here is proof:Michael in the last two-weeks has become a Tasmanian devil. He stands in his walker and runs around like a whirlwind. Wants to touch everything-taste everything-see everything and feel everything. He discovered that Tosh our Scottish terrier has a beard worth pulling, a water bowl worth tipping and food worth biting. His four teeth work like a beaver on everything. He loves graham crackers, Melba toast, Matzos, and expecially bananas. He wakes up smiling and melts our hearts. He continues to sleep throughout the night, loves his naps and car rides. He is an expert at charming, literally everyone he meets and gets perfectly proper adults to make funny noises and faces for his entertainment. I am so proud that Richard includes him in every one of his trips to be with Lisa, and I know in my heart Lisa feels their presence.
Michael – mlwintory@msn.com
