Tuesday, August 21, 2012

The Scott Jones & Family Benefit and Talent Show

For those of you who have not yet heard, there will be a benefit concert in Wilmington, NC featuring two nights of live bands, many that Scott played in or played alongside.  The show will take place on December 28 & 29 and here is the lineup:


Night 1, Dec 28 - ATU, After Forever, From Beyond, Betrayer, Second Thoughts, Scott Renner & Friends, Bad Rabbi & the Heretics, (T)Ex Svengali.

Night 2, Dec 29 - Quickbread which is Brickbat with Mac McNeilly [of the Jesus Lizard] sitting in for Scott, Rural Swine, Mullet Revolta, The Crack, White Bikes, The Hedgetoads, The Neons, Sweetfeed, The Squirrels.


Here is a link to more information:

http://www.facebook.com/events/112809528864051/

All proceeds will go towards the Scott Jones Medical Fund.

A HUGE thanks to everyone on both coasts working very hard to pull this event together!

Scott and Floyd

Last weekend Scott and Floyd were reunited for the first time since his accident over four months ago.  Jen was understandably a little nervous about the big event because both Scott and Floyd are at a stage right now where it is difficult to predict how each are going to react in any given situation.  When Jen arrived she asked Scott if he knew who was there to visit him today and he replied, "Floyd."  (I'm not sure if he remembered that from her telling him the day before or if he was reminded by the nurse five minutes beforehand but, in either event, it was amazing demonstration of short term memory skills which is something typically very difficult for people impacted by TBI.)  Scott, on seeing Floyd, said exactly what he always says to him, "hey buddy!"  They had a great reunion and it has been a huge relief for Jen to be able to bring Floyd with her to Vallejo on the weekends now.

Saturday, August 18, 2012

The Latest

Scott is still in the rehabilitation facility in Vallejo and continues to make good progress.  This week, for the first time since the accident, he was able to read a few simple sentences.  It seems that he is currently making the most progress in his cognitive development and that his physical progress has slowed down for now.

The rehabilitation program at Vallejo is typically a three week program.  At the start a team of rehabilitation specialists meet with the patient and family to set some goals and, at the end of the three weeks, the patient typically discharges home. 

Scott has been at the Vallejo facility for three weeks already.  However, Scott has not yet met the rehabilitation benchmarks that were set for him - things like self-feeding, being able to come to a standing position on his own, etc. 

This has been an extremely stressful time for Jen because, while he is making great progress and receiving excellent care in the Vallejo facility, she has been told that he is not progressing at a rate that would allow him to continue to stay in Vallejo.  (My understanding is that this has something to do with their funding and a need to show a certain rate of progress in order to keep their ratings high and funding up.)

Jennifer is fighting hard to ensure the best possible care for Scott to try to keep him in Vallejo.  She has contacted health care attorneys and filed formal complaints about his impending discharge.  Despite this, it is likely that he will be discharged early next week.  The question of where he will go next is especially stressful.  Doctors at the rehabilitation facility have confirmed that it is not safe at this time for Scott to go home, yet he only has a few weeks left of nursing care coverage on his insurance.

The Safety Issue:

I've been reporting mostly on the great strides he has been making and on his milestones such as tying his shoe and reading simple sentences.  But, it is important to understand that his general state is one of confusion and inability to appropriately respond and communicate.  Right now, he remains a solid V on the Rancho Level of Cognitive Functioning Scale (confused, inappropriate, non-agitated):

http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&ved=0CG4QFjAD&url=http%3A%2F%2Fwww.rancho.org%2Fresearch%2Fbi_cognition.pdf&ei=JTIwUJbYC8WYiALIw4CABA&usg=AFQjCNFhNIEnKrWBCs-eQC13Sidp9_ZPrQ&sig2=gTksh1a_CIFIvZWtb1bLcQ

This means that although he demonstrated this week that he can read simple words, he may not be able to do it next week.  His skills are not consistent yet as his brain works hard to repair, rebuild and rewire itself. 

As a result of his current cognitive and physical state, when Scott does come home, he will require round the clock supervision and care.  He cannot safely be left alone.  He is unable to walk or stand without the assistance of two people and, especially in the familiar surroundings of home, he may try and do just that putting himself at great risk of injury if left alone.  So, he will require supervision when Jen steps out of the house to take Floyd to school, walk the dogs, run to the store, etc.  And, should she need to take Scott anywhere, such as to a doctors appointment, she will need assistance lifting him, getting him safely down stairs which he is unable to navigate at this time.  (With ten steps to their front door, a steep hill out front of their house, and a two year old in tow, it is a bit staggering to even imagine the logistics of this endeavor and how it is even going to work.) 

In addition, Scott requires nursing care.  Among other things he is on a feeding tube and currently on a number of medications common to people with TBI injuries which have to be administered through a combination of the feeding tube and injections.

So, while we are all extremely anxious for Scott to hurry up and come home, the prospect of him being home - and the care and supervision he requires right now - is a bit overwhelming.  

Once Scott is discharged home, none of this care will be covered by insurance.  Insurance will cover three hours of at home rehabilitative therapy each week but, compared to the three hours a day he receives now, it will not be enough.

(That's why the donations that have come in from friends and family are so appreciated, THANK YOU!!  Jen has been saving them to go towards care and rehabilitative costs for when he comes home.)

So, at this stage it is unclear when he will be discharged from Vallejo.  Our hope is that he will be accepted back in to the nursing facility in San Leandro where he can continue to receive the round the clock care and supervision that he needs and also get daily physical, occupational and language therapy.  If he is accepted back in to the San Leandro facility he will hopefully be able to stay there for the three or so weeks he has left of nursing care coverage on his insurance.




Sunday, August 12, 2012

Progress Update

Scott is still in the rehabilitation facility in Vallejo.  I was able to finally visit him yesterday after two weeks of being out of town and he has made great progress.  For the first time since his accident, he was actually initiating conversation rather than simply responding to my questions.  He looked bright, alert and focused and his voice was stronger than the mere whisper it was last time I saw him.

I did not see any of his therapy sessions, he had finished for the day already, but Jen tells me he is progressing well.  This week he was able to correctly identify the time on an analog clock and tie his own shoes.

He also had another first this week - he asked for Floyd.  He specifically asked, "Where's Poopie D?" which is what Jen and Scott called Floyd when he was a baby but do not call him that anymore.  Jennifer responded by asking Scott if he knew how old Floyd was now.  He thought about it and correctly answered "almost three." 

Today Jen is bringing Floyd to see his daddy for the first time since his accident four months ago.  Very exciting!