Upate
NOV 16
Update on FLA Medicaid
Dave and I we went to the Social Security Office while we were home in Panama City because when I was at the hospital for Billy’s CT Scan, the one that I didn’t attend for whole bunch of mix-ups, I got a call from someone who said they were reviewing Billy’s case but needed all of his medical records. OK, great. I’m at the hospital, well before end of day, I’ll just take care of that now. Instead of trying to find the Medical Records Office I’ll just call. Another roadblock. “I can’t release those records without a Power of Attorney.” Allow me to remind you that our morning began at the lawyers’ office to start the paper work for just that thing!NOV 15 , 2024
The Interdiction Hearing
We are very close to the end of the civil court case. Dave and I went to court to be appointed curators Billy’s estate, allowing us to make decision on his behalf while he is unable to communicate. Neither Dave nor I been in a courtroom except for jury duty. Everything happened “just like on TV.” It was all very interesting. Dave and I were sworn called to the stand. I was called first . Once I sat down our attorney approached me, with the judge’s approval, of course, and presented me with the same 5 exhibits that he had given to the judge. The answers to the questions that were to be asked were highlighted on my copy. Exhibit A was about the Incident Report. After about 5 questions, the judge interrupted the attorney saying “Are all Exhibits going to be this lengthly?” The answer was “Yes, your Honor.” The judge called all attorneys to the bench. At the of the consultation, the judge announced that she would review all exhibits in her chambers. After about 20 minutes, she retuned to the bench, the proceedings continued and we are now able to make decision on Billy’s behalf.NOV 14
Matt’sVisit
Billy had a visitor today! A colleague from Revive swapped schedules so that he work the New Orleans show so that he could visit with Billy. It was a great day, just having company for a little while. And I appreciate the stories they bring. It’s evident that they know Billy’s strength back and spirit. The most common sentiment is “If anybody can come back from this, it’s Billy.” I stepped out of the room to take a phone, which gave Matt some time to spend alone with Billy. We talked about Billy’s mouth movements. Doctors will tell you the movements are reflexes. Anyone else will tell you that Billy is trying to communicate. Matt strongly is definitely on the commutation side.When I had Dr. Lee’s ear yesterday, I asked him about. He explained that if movements are always the same pattern, the movements are reflexes. If the movements are different, then he is trying to communicate. This gives me hope.New Surgery Date Mix Ups
A lot of you sent so many well wishes for what Dave and I were expecting to be a surgery to adjust Billy’s shunt. If you recall the report after Billy’s last CT scan showed that the ventricles in his brain had widened and Dr. Lee would set a date for surgery. Dr. Lee did say the surgery was less surgery and more a procedure that could be done in the ambulance bay as an Outpatient. You may also recall that was the visit that neither Dave nor could attend, so we did not get the report from the horse’s mouth. I got a call 3 days later from someone else in the Neuro Surgery department who could have used the word “procedure” and I processed that word to be the same as “surgery” BUT the first time I looked at the Almighty Portal, IT said SURGERY in the afternoon, maybe 2 o’clock; the next time I looked, it said SURGERY but with a 10:30 am time a week later.2 days ago I happen to call the hospital with a question about the surgery. That’s the when we found it was changed to a consult and it’s 2 weeks with the excess water on his brain.Now it’s November 27. Nan and I wait for almost 3 hours for Dr. Lee to show up on the scheduled ZOOM consult. I received one call from the doctor's team telling me that Dr. Lee has busy schedule. But he WILL call. He did call and made a house call to Ferncrest. The procedure to regulate the shunt less than 3 minutes.Our Q/A session took a little longer. See below.Dr. Lee said that Billy is now and has been out of a coma since he was able to open his eyes. He is now in a vegetative state.
A coma is a state of unconsciousness, while a vegetative state is a state of wakefulness without awareness:
Coma
A person in a coma is completely unconscious and doesn't respond to external stimuli. A coma is a medical emergency that can be caused by a number of things, including head injury, stroke, cardiac arrest, and drug overdose.Vegetative state
A person in a vegetative state is awake but shows no signs of awareness. They may open their eyes, move, and have sleep-wake cycles, but they lack cognitive function. A vegetative state can occur after a coma, when a person has recovered enough to be awake but not aware. It's also known as unresponsive wakefulness syndrome.
A vegetative state can be permanent, but awareness may improve over time. Treatment is usually supportive care.
It can be difficult to distinguish a coma from a vegetative state, and a physical exam alone may not be enough. Imaging tests like CT scans, MRIs, and PET scans can help.
There is no way to determine how close Billy may recover to normal until he comes out of his vegetative state.
The procure to regulate the shunt (open the valve) may not show any outward changes. His CT Scans will be scheduled every 6 months.Yes,I should continue with his exercise , but may want to wait until he begins to move on his own to invest in a paid therapist.
I know this is a lot to take in. You can always drop a comment or question in the box below.