Hey gang,
Richard here, from Lisa central. It's a quiet Sunday afternoon, of the type we haven't had in, well, never, since Michael was born 20 months and four weeks ago. That was two weeks before that terrible night when a genetic killer lying silent and deadly and awakened by Michael's birth tried everything it could to rob Lisa of her chance to enjoy the life she worked so hard to have.
By fighting back so hard, Lisa gave us all the chance to see how the very worst can bring out the very best in so many. By fighting and winning, Lisa gave doctors the chance to solve the mystery of her father's terribly premature death when Lisa was just twelve. The answer to what took her dad and almost claimed her, a genetic condition call "type 3 long qt syndrome", has come in time to identify its presence in our son and to test her brother and niece. Michael now gets medicine twice daily to help keep chemicals in balance that conduct the electrical current that keeps our hearts beating. Fortunately, the stuff tastes good enough he insists on getting it.
We brought Lisa home in June. Wow. It's hard to believe it's been 4 months already. We've had so much going on getting her settled in, modifications to the house, managing the inevitable crisis that I haven't had time to turn around. Dad has continued to do his amazing job of keeping everyone updated. Folks have been so patient for more details so let me hit the highlights.
When I last kicked in here, we were still in at select specialty hospital, the long term acute care facility located in phoenix at St. Josephs hospital. Lisa was stable enough to be moved and that was what our insurance company blue cross had been demanding since the end of February.
But while Lisa was ready to leave select, to bring her home, we needed key modifications for our home to be safe and comfortable. We also needed someone special to move into our home and help care for Lisa during the day while I worked. I posted on websites and publications in the field from all over the country and inquiries literally all over the world.
We continually were defeated by the math. Folks with the experience were either from other countries and no way to get here quickly, or were here and far more expensive than we could afford. Folks from here we could afford were really nice people but lacked the experience to do all the things Lisa needs. Home health care agencies were prohibitively expensive. We earn too much to qualify for assistance and not enough to afford the available applicants.
While I was chasing my tail to find a caregiver and getting the financing and other logistics for the home modifications, Blue Cross decided to make their point and stopped covering Lisa's stay at select. The retail cost for Lisa's care was running between 60 and 90 thousand dollars a month. A bit more than my salary as a deputy Pima county attorney could handle. Pressure was being applied to move lisa out of select to a lower level of care, but none were available that could meet lisa's needs and would take us in light of the lack of coverage. But with each new facility, a new discharge date would be announced only to be postponed because of these issues. The stress was unbelievable.
Just when things were starting to get desperate, we met Patrice. After 15 years as a certified nurse's assistant, she was back in school and in a period of transition in her life. It was a perfect match. Patrice went to phoenix, stayed with Lisa at select, worked with the staff that had become extremely protective of her, (they had vetoed a previous candidate) and was universally approved. We had our caregiver.
While Lisa was stable enough to leave select, she was by no means in the clear. Her cardiac arrest-caused brain injury had left Lisa's body stiff with spasticity and a host of interconnected complications. Lisa was still fighting to regain weight from a loss caused while tube feedings were reduced during hyperbaric treatments to help her spasticity. The weight loss slowed the healing of a couple of wounds caused by casts and splints used to try and control muscle contractures from the spasticity. Gaining the weight back in turn was slowed by an infection in her intestinal tract that was stubborn and drug resistant. Increasing the tube feedings caused regular bouts of infections in her lungs cause by aspiration of her tube feedings. These infections had to be treated with anti-biotics that wreaked havoc with the healthy bacteria in her gut, complicating that infection.
Obviously, the way to break the cycle was to get Lisa out of the hospital and back home. But still, leaving was hard in many ways. While the folks in the business office at select were taking care of, well business, the others were taking care of Lisa. Our nurses and cna's were simply amazing. Lisa was cared for by a pretty regular crew day and night who came to know and love her as we do them. Lisa's doc's had her condition down so well, they were treating complications before they could get out of hand. Connie, Deb, Maureen and Marty, Lisa's therapists never gave up on Lisa and have continued to help us even after we came home.
But more than the medical help, it was hard to leave our spiritual family. Every week, our little family took the elevator down to the chapel to attend church together. Michael's baptism, first birthday and first public addresses (!) all happened in the St. Joe's Chapel. Father Milt provided comfort, strength and support; he and Father Bill never batted an eye on the amazingly few occasions when Michael insisted on being heard. Our brothers and sisters in the parish never failed to offer prayers and kind words to Lisa, praise to Michael and support to me.
While we are so glad to be home we miss the people in phoenix who made our fight possible- none more so than our friends who've come to be known as "lisa's rangers". Warriors and dragon-slaying prosecutors all, they were the picture of selfless kindness in caring for Lisa, Michael and me.
I'm often told I have no idea how many people pray for us, and I know that's true. Just when I was wondering how I was going to get all modifications done to our home due to cost overruns, a call came from old friends in law enforcement from Oklahoma. With the blessing and support of our friend and former boss, Oklahoma attorney general Drew Edmondson, training for law enforcement officers was held with the proceeds going to Lisa's fund. Prosecutors from all over America sent help after an outreach by my colleagues in the national district attorney's association. More unbelievably generous help came from my wonderful step-mother's family, as well as my dad's family. Just as earlier help from Lisa's colleagues in federal service got us the leave time we needed to keep our roof over our heads, this help made it a home for Lisa again.
With a caregiver and home modifications in place we brought Lisa home- and immediately had trouble. Her feeding tube, replaced right before her discharge, clogged. One of the really great doc's we've found since coming home told me that stuff like this was going to happen for the first month or so while we got settled in and that was really true.
We had trouble with equipment, supplies and vendors. But somehow after a month or so, stuff started coming together. Okay, it's actually been longer than that but today:
- Lisa's gotten an additional tube dedicated to feeding. It's lower in her intestinal tract, isn't clogging and allows her to get a volume of nutrition that has allowed her to regain her weight without overfilling her stomach. Since it's been in we've had no aspiration and no more lung infections.
- With the extra nutrition and great care from Patrice, her wounds from the splints and cast have healed beautifully.
- The stubborn infection in her intestinal tract is gone, gone, gone.
- We've gone longer without any major problems than at anytime since this started. I attribute this to the consistency of care Lisa's getting (it's just Patrice during the day, me at night and we alternate weekends), the lack of commotion and the resultant rest, and the lack of opportunistic bugs and viruses.
- Patrice has most all the vendors whipped into shape. Supplies and medicines are delivered or picked up on a schedule that keeps us in stock. We have just about everything we had in the hospital (with the significant exception of a hospital- quality bed and mattress- but we're working on that) right in our home.
- Lisa's doctor makes house calls as does his nurse practitioner. Lisa can get x-rays and labs done here at home. Her speech and other therapists also see her here at home. While her baclofin pump and other services require office visits, we have a public transportation van that takes Lisa and Patrice to those during the week.
- Lisa's routine and the modifications made possible by those family members and friends mentioned earlier, gives her time for rest, a shower in her own shower, time sitting on our master bedroom patio, (see picture) joining us downstairs while I cook dinner and for a movie or reading to Michael- in short to be fully part of her family's life in our home.
The insurance coverage for Lisa's stay was the "death star" looming over our existence, at least our financial existence. I'd sent in an appeal that blue cross insisted be called an "application to reconsider denial". I spent some time trying to make as strong a case as I could. I simply couldn't believe after everything blue cross has done to give Lisa the best chance for the best recovery possible they'd leave us in the lurch. Well their answer came after we got Lisa home in June. I was in the middle of a 6 week murder and racketeering trial and to glance at the 12 page letter, you'd think we were sunk. But a more careful reading revealed that while blue cross didn't believe they had to pay, they were going to make an exception for Lisa- whew!
So, instead of another round of appeals and/or a lawsuit or worse, bankruptcy, we have half a million dollars in medical bills run up between February and June covered! More recently, blue cross has agreed to consider whether they'll cover the kind of bed and mattress Lisa had in the hospital rather than the dinky home health care bed she now has. Normally, we'd have to buy the bed hoping they'd pay, but their kind of pricey so, knowing up front will be really helpful. We hope to hear from them this week.
Our local church with Father Liam has welcomed us back with open arms. Our public shuttle service doesn't go on the weekends so Lisa hasn't been able to go yet, but we're working on that as well. Michael's Godparent's Jack and Napua Davis are keeping close tabs on Michael's attendance, and I'm determined not to disappoint them.
As you can tell from dad's updates, he and Sherry are doing great. Sherry has started working again as a nurse practioner at a local clinic. Dad and his new best friend, his grandson, have a grand old time everyday; I really can't tell who enjoys it more between them. They are a real blessing to Lisa, Michael and for sure, me.
Back in January I warned the folks wanting to discharge Lisa ASAP, that me getting everything done I had to would be complicated by the busiest trial schedule I'd had in years. This had started in June of '06 when I'd come back from trying a pretty nasty case in Oklahoma to start a series of trials in a 40 defendant racketeering case. All the cases I'd been continuing after Lisa got sick were coming up for trial with no way to avoid or delay longer. These were big bad cases with big bad guys and I needed to – as my old boss Bob Macy would say- cowboy up.
Well, it was about as bad as I thought it would be, but I had tons of help from the wonderful staff and the cops I work with, a little luck and pretty good jurors. All the bad guys in all those cases got convicted, in fact it went so well, my boss nominated me for Arizona prosecutor of the year, and despite some really terrific nominees from other jurisdictions, I got the nod! Sherry brought Michael to the award ceremony and one of my co-workers thought it'd be nice to give him a piece of cake. With frosting. There are some pictures of the smearing, but that will be for another time…
One of the best parts of having Lisa home is that instead of loading up and hauling Michael back and forth to phoenix each weekend, we're able to do normal family stuff. I've got the yard back in shape, with flowers in containers on Lisa's patio, and fall vegetables planted. I am so excited to finally get to plant Lyle and Susie's pole beans. They are up and climbing! Here in the desert this is a great time to grow with days warm and nights cool.
Ok gang, that's a not very brief run-down of how we're doing. Lisa is home with her family and we are living our lives, thanks to the countless prayers and help from so many of you.
Richard Wintory
