CHARICSEA

I am thinking of two separate postings.  This first one seems important as context., which should have been first. The next section is the most recent.

Background:

As you know Chuck has struggled with increasingly painful and debilitating back pain for over 20 years. No treatment has helped for very long, if at all: one low back laminectomy surgery, numerous injections, a stimulator his body rejected creating life-threatening sepsis, several rounds of physical therapy, two rounds of inpatient treatment designed to eliminate or reduce his opioid medication (which never worked), and techniques we don’t even remember.

Finally, we agreed to a 360 Fusion combination Laminectomy and spinal fusion as the only option to avoid increasing opioid dosing. Dr Jeffrey Phelps, Spine Works Institute, performed what is called a 360 degree fusion, entering from the front and the back, on November 3.  The surgery was 7 hours long with Dr Phelps as the spinal surgeon. Another surgeon was standing by since they had to move organs over to get to the front of the spine.   I do not remember his discipline.  My nurse sister-in-law, Chuck’s brother’s wife Karmyn, may be able to help me here.  Dr Google could not and it is too hard to get through to the doctor’s office as it is to ask such a trivial question.

Although we have excellent health insurance, Chuck was denied admission to an inpatient rehab hospital.  He spent 6 wasted days in a skilled nursing facility (SNF) with three 45-minute physical therapy sessions. Most of the staff were outstanding but the services were “not consistent nor beneficial,” to quote Chuck On the 4th day we both noticed tremors on his hands and legs.

On the sixth day, he fell on the way into the bathroom while using his walker.  He was taken to North Hills Medical City emergency room, in N Richland Hills. Based on a family and professional appeal, Chuck was admitted to Texas Rehabilitation Hospital.  The 27 staples on his 3-inch C-shaped scalp laceration are now down to 15 as the area pops the staples out.  Texas Rehab Hospital had been approved and we left the emergency room and checked into the rehabilitation hospital. The tremors continued to worsen and on the second day of admission, the supervising RN on duty talked with the hospital consulting physician.  He recommended returning to the emergency room.  Although one was closer, we returned to North Hills, where Chuck’s records were from procedures, testing, and in-patient stays.

ER testing resulted in admission for a bruised kidney that could be physical or chemical.  He was treated with IV fluids.

A consulting neurologist has seen him every day while here.  The tremors continued and worsened. EEG, ordered by the consulting neurologist, showed no evidence of injury, stroke, TIA, or other problems. 


Next Posting

I had hoped I would do brief daily entries about Chuck’s progress but I guess not yet. Some of you just want updates to scan through so I tried to make this posting easier. Some of you among us want more information. Can I write to be all this to be all things to all people?  Probably not.  Thank you to Katherine, my daughter-in-law, for offering to help edit and post.  
 
Who could guess that the 7-hour back surgery has been the easiest part so far? 
 
These entries are also good documentation for me going forward with his recovery. 
 
  • Insurance and money
  • Medical
  • Family
  • Family Caregiver
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Insurance and money (controlling us all).
 
We are waiting for insurance approval for re-admission to the rehab hospital. After three days he was dismissed. The whole referral/approval process had to start over. I’m impressed with the rehab hospital admissions coordinator and hospital case manager, who has been checking in regularly. Once approved, Chuck will be transferred back to the same room where they have been able to leave his “stuff.” It may be the weekend before we hear anything because of the holiday. It has bee
 
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Medical
 
  • Surgery recovery
  • Fell in his hospital room
  • Complaints of pain in his knee and right hand
  • Confusion, memory, and “sundowning” symptoms
  • Testing for Parkinson’s  disease
  • Diagnosis – don’t know yet
Spinal surgeon Dr. Phelps is pleased with Chuck’s recovery, removing bandages and examining his Durabound sutures. We will see him in a few weeks. 
 
Currently, Chuck is at North Hills Hospital for a fall unrelated to the surgery,  Chuck fell Monday, 11/20, and sprained his wrist/hand. 
 
I found him sitting on the floor leaning against the bathroom door. We think he fell from the chair that PT/OT left him in because several pillows were in the chair. He did not have a gait belt on. Not sure what happened. 
 
Chuck said he fell when he got up from bed using walker. The Posey pad alarm in the chair and the bed alarm had been disconnected. I cannot see him doing it because there are so many buttons and electrical outlets, even the staff, especially several new staff, have trouble with this particular locked bed.  I can’t operate it. His primary nurse told me she suspects he has Gout.  She also told me that the “occurrence,” in this hospital’s terms, was reported and Quality Control will investigate what happened with the fall.  She didn’t think they would contact me so I will give them some time and then ask for a report. I don’t know if they will give it to me.  
 
I have asked to talk to the Hospitalist twice during Chuck’s stay. I never heard from either of them. All nursing staff and aids have been outstanding. After Chuck’s fall, his primary RN sent a text to the Hospitalist and had not heard from him by this morning.  Not sure but I will need to ask questions about chart entries. At shift change, the same nurse from yesterday said she would text the Hospitalist again. 
 
Now that he is more alert, he has been complaining about right knee pain. He was in the ER Thursday night and must have hit his knee on the bed rail during one of the more pronounced tremors. I had to ask but they did put bumpers on, changed out from the ER, and are still on his bed rails.
 
He is incontinent for the last few days. He has not been eating much. The day Chris saw him he fed himself and ate more than half. He has lost a lot of weight that he needed to but not this way. A thinner frame will be healthier and better in intensive rehab though.  
 
Diagnosis –  He has asked me repeatedly what is wrong with him. I tell him the same thing over and over:  we don’t know but once he is back in the rehab hospital he will have testing at an imaging center. My theory is some type of infection that healed caused the tremors. They suspect Parkinson’s disease.  He cannot have an MRI because the titanium “cage” in his back fusion is “mineralizing” as part of recovery. 
 
Sundowning 
 
Chuck has symptoms of sundowning, Also known as late-day confusion, sundowners syndrome, or sundown syndrome, sundowning is most often experienced by people with dementia and also with people with Parkinson’s disease and others.  It is a group of symptoms that can affect memory, thinking, personality, reasoning, behavior, and mood.  Chuck can start talking gibberish, imagining things around. I have been told that many symptoms of Parkinson’s and Sundowning can be managed.  We will wait and see what further testing can diagnose and treatment can be used.
 
 
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Family
 
My sister-in-law Karmyn Seaberg is retired from her high-level hospital job but will always be a nurse. Katherine, our daughter-in-law/daughter and working mom went through years of her father’s Lewy Body dementia. Many of the symptoms at various stages are similar to Parkinson’s Disease.  They both have been helpful. 
 
Katherine set up CaringBridge, is posting and editing,  and is sharing her experiences as a daughter navigating the health care system, complicated diagnosis process, long-term care, and supporting her mother. We are so proud of our son Chris in how he is juggling work, his dad’s, illness, and supporting Katherine and her mom through those difficult years.
 
Our youngest son, Jon, has been boots on the ground, especially lately. He recently put up a dog door and is tall enough to get a dog’s rope off the roof from an epic failed toss by yours truly. 
 
And of course, our grandsons Sawyer and Beckett are a source of love and laughter.  Our dogs have also been a source of fun and comfort, especially for me during the past few weeks both Chuck in hospitals and rehab. 
 
Chuck has said he regrets so many bad decisions he has made in his life and that these problems are the consequences. Chris and Jon’s separate hospital visits over two days seem to have brought him back because no tremors since their visits. He does not remember them being there but they both talked to him as if he was awake. 
 
I have been incredibly blessed with long-time friends and family 
 
Not only daily texts and phone calls from my BFF. My sister-in-law, cousin in AR, friend in Oregon,  and one in New Jersey plus so many here in TX are a phone call away. Can’t imagine if they were not there. I had been thinking about CaringBridge but Katherine set it up, will post, and edit it. 
 
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The family caregiver
 
Many of you reach out and say the same thing to me. “take care of yourself.”    I have even taught it and counseled people about caregiver self-care and stress management for 15+ years.  Easier said than done.  For me.  I am turning to carbs and sugar….and I have diabetes.
 
Stress – As a follow-up to starting thyroid medication, I saw my Physician Assistant yesterday.  She is highly skilled but wears me out she is so thorough. I knew my diabetes was out of control and had called the office a month ago to ask for a meter.  I got a call from a durable medical equipment company asking to verify my information.  INow they are. sending it to Medicare for review before they can order it.    This long-winded story is another example of how broken healthcare is.  Great benefits and quality care but delay, appeals, and just accessing professionals and services added to the stress and contributes to fatigue. 
 
  • Chuck and I have been married for 28 years and I miss my husband being home and our routine. He opened his eyes at the last ER visit and asked me if I  knew what I wanted.  I answered “A Coke.”  He said no and that he wanted one night at home together in our recliners with our dogs. I teared up
    • Keep up discussions with Chuck that this is temporary and will change.
    • Remind myself how much we are grateful for.
    • Continue to be grateful for family and friends always there for us.
  • For six months as his health declined, I took on more and more responsibilities around the house. Both our sons have said to ask for their help but I can do it and they have such full lives already!   Just like other caregivers are.
    • Ask for help. 
    • Accept help.
    • Be gracious about it.
  • My chronic back pain and sciatica are worse so I am using Chuck’s cane to reduce my risk of falling.
    • Start exercising more consistently.
    • Go to Yoga classes every week.
    • Use the recumbent bike, even if it is a few minutes a day.
  • I am semi-retired and still love what I do but find I am less focused and lack the interest and energy that I have had. 
    • Already done:
      • Sent an email to contract clients  will be working less 
      • Training my web manager to take on more responsibilities which she has. Awesome partner!`
  • I average 5 hours of sleep a night so I am tired.
    • Make myself leave the hospital or facility at a more reasonable time.
    • Eat better.
    • Get in bed and either go to sleep or listen to sleep-friendly music and meditations.
    • I slept better last night in the hospital recliner converted to bed than I have in weeks. I may stay here Thanksgiving Eve but definitely Thanksgiving night. So maybe sleep at the hospital or rehab center.
  • Diabetes – I had asked for a glucose monitor but here we are a month and the company said they were waiting for Medicare approval, having just gotten the doctor’s prescription.
    • Start taking prescribed injections of Trulicity once a week to manage nmy type 2 diabetes. It has been shown to  reduce the risk of major cardiovascular events, such as death, heart attack, or stroke in adults with
    • Exercise
    • Eat better
  • Social isolation, usually by choice, but
    • Spend time with Friends
      • BFF at our pedicures and sitting it in the car with sodas to chat
      • Sushi with long-time friend
      • Phone calls and text
    • Laugh more
    • Read books, listen to audiobooks, watch YouTube, watch innocent often dumb motives
    • Start scanning a century’s worth of family photos.  Doesn’t have to be all at one time, does it?
    • Find something to do that I enjoy or I can learn
      • (it wasn’t the guitar although I tried.  Didn’t want to put the time in to practice).  My travel wall and sandscapes are all done. 
      • Crochet some more dishcloths, coasters, throws, etc
      • Learn to knit?  That purling always gave me problems
      • Organize something I have put off. I enjoy seeing it done. I asked for some help with the garage for Christmas
  • Worry – Reminding myself that having come from a family of world-class worriers, I am a worrier-in-recovery.  When I start that “what if” thinking, do something else that I can see results in.  What I (or anyone) worry about never happens that way anyway!
  • Too intense and serious
    •  Play
      • With the dogs
      • Cherish and play with the grandsons when they are here, talking to them, and seeing their photos and videos.
      • Watch more funny or lightweight movies
      • Make exercise play or fun.
  • Read all those free blogs I have written or edited with my awesome web manager partner and use information from the 20-year-old website I created and am responsible for now evolving under the management of my outstanding web manager
  • Etc, etc. ???? I could go on and on

know how. Learn some new things. Just do it!

 
 
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