New Developments

Last Tuesday Scott had a follow up CT scan which confirmed that he still has hydrocephalus.  His shunt was adjusted to allow for increased drainage and doctors reported that it will just take some time to reduce fluid and swelling.  The scan showed that it is reducing from week to week and they will continue to monitor the progress.

The big news is that Scott was finally transferred last Wednesday from the nursing facility in San Leandro to the rehabilitation facility in Vallejo.  This signifies excellent progress in terms of his recovery, as medical staff believe he is now able to follow enough commands and that he is strong enough for several hours of rehabilitation a day.  The facility in Vallejo specializes in TBI rehabilitation so almost immediately on Scott's arrival they began assessing his current abilities and tinkering with things like his feeding tube all for the purpose of facilitating recovery for someone with his kind of injury.  For example, it is very important for Scott to regain the ability to eat solid food.  However, his feeding tube was set on continuous feeding so he was never experiencing hunger.  This is appropriate and probably common for many people in the nursing facility who, based on their condition require long term continuous feeding.  In Scott's case he needs to regain those skills.  In the Vallejo facility they have adjusted his tube so feedings occur in meal like intervals rather than continuously.  Hopefully this will encourage him to want to eat solid foods and will facilitate his progress.

Also, all the rehabilitative exercises are focused on his particular injury.  He has access to about four hours worth of rehab each day which is a significant increase over the approximately one hour a day he had in San Leandro.  Jen is extremely happy with the care he is receiving in the new facility.  It is unclear how long he will remain in Vallejo but it will all depend on his progress.

More Progress and a Thank You

First off, thanks so much to everyone who has contributed to the donation fund.  The donations are coming in and are VERY appreciated.  As long as Scott remains in the skilled nursing facility his expenses are covered by insurance but soon, in a matter of weeks perhaps (?), he will transfer home and he and his family will incur many additional care expenses that will not be covered at that point.  All donations are being held to cover costs associated with Scott's care and rehabilitation once he moves back home.  For example, Scott will require round the clock monitoring for his safety once he moves home which means that if Jen steps out to take Floyd to school, go to the grocery store, or take the dogs for a walk, someone will need to be there with Scott.  This kind of expense is not covered by insurance, unfortunately.  Scott will also require some level of nursing care while at home, though it is unclear how much at this stage.  He currently remains on a feeding tube and requires help with other daily living activities right now, but that could all change in the coming weeks.  

Also, a huge thanks to everyone in Wilmington who is mobilizing to organize an amazing benefit event.  More information on the event - which sounds like it will include multiple days (Dec. 28 & 29, 2012) of some old school fun - can be found here: http://www.facebook.com/events/112809528864051/

Scott is still recovering from hydrocephalus, or the build up of pressure and fluid on his brain that occurred prior to his recent surgery.  As a result he remains a little sleepy and sluggish and is not yet back to the level of communication that he reached prior to the build up.  He has seemed to feel worse during the past few days and doctors determined yesterday that he has a UTI infection.  We aren't sure how long he has had this -- and it is very difficult to know because sadly he is unable to communicate his symptoms or to tell us when he is not feeling well.

Doctors are keeping a close eye on the hydrocephalus and he is scheduled for a follow up CT scan next Tuesday.

Despite his UTI and the impact of the fluid build up, Scott had a great visit with his his sister Ashley, his nephews Sam and Ben and brother-in-law Roger this week.  He has also been making good progress during his therapy.  His biggest strides have been made in the area of physical development and he is walking with only minimal assistance now.  Doctors think he should be ready to move on to the rehabilitation center in the near future.

Donate now to the Scott Jones Medical Fund

It's becoming increasingly clear that Scott is going to require medical care and rehabilitative care beyond whats covered by his insurance. In order to help Jen and Scott pay for these expenses, a donation fund has been established. You can click the Donate button on the right side of this page to submit an online donation that will go directly to Jen and Scott or send a check directly to them at the address listed.

Information for Visitors

The following is a link to some information that is helpful in understanding TBI recovery and different levels of brain functioning that occur during the recover process. 


The Rancho Levels of Cognitive Functioning is

an evaluation tool used by the rehabilitation team.

The eight levels describe the patterns or stages of

recovery typically seen after a brain injury. This

helps the team understand and focus on the

person's abilities and design an appropriate

treatment program.

It is amazing to see how Scott has progressed during the three months.  He has gone from Level I to now Level IV.  The information below will provide some insight in to his progress as well as some tips for how to interact and what to expect when visiting.

http://www.rancho.org/research/bi_cognition.pdf

Back to Redwood City

Tomorrow Scott travels back to Redwood City to meet with his neurosurgeon and have his staples removed (from his recent surgery) and to have his shunt readjusted again to relieve increasing pressure. Scott has been very sleepy and very quiet lately.  We have great hope that once some of the pressure is relieved tomorrow, Scott will again exhibit the great progress he has made thus far with alertness and communication.

Ups and More Downs

Scott spent the morning in the ER today.  It started last evening when Jen noticed that he was beginning to regress again - she noticed some of the same symptoms she had seen in him in the few weeks leading up to surgery.  We now know that these are symptoms of increased pressure on his brain from fluid build up.  She called the neurosurgeon who ordered him to the nearest ER for a CT scan.  According to the surgeon it appears that his ventricles are still swelling from surgery and, as a result, it is impacting his ability to drain fluid.  They plan to keep a close eye on his condition and he is scheduled for a follow up scan on Thursday.

A Day of Breakthroughs

A lot has happened since the last post.  Scott has moved back to the skilled nursing facility in San Leandro and has been recovering well from surgery.  His swelling from surgery is going down, and the fluid is draining properly since his shunt was readjusted.  For the most part he has spent the past few days resting and recovering since surgery.

Today, however, he showed significant progress and some major breakthroughs during his therapy sessions!  For the first time since the accident he read words from a flash card.  He also stood up from a sitting position on his own for the first time.  He apparently walked with minimal assistance from just one other person, responded appropriately to a series of questions, correctly identified colors (which he has done once or twice before) and followed multiple commands in a row.  This is all significant progress, and is especially amazing in that it all took place in one day.  It is such a huge relief to see such progress, especially after an agonizing period of regression just prior to his surgery.

Today Scott also asked Jen why people were looking at him funny.  I am not exactly sure what prompted this question but I wanted to post it because it is an important reminder to all of us who visit that even if it seems like he is sleeping or not paying attention, he is aware of what is going on around him, can see and hear you, and is sensitive to your reactions.  So, it is important to act natural and to not make specific comments about his appearance or your perceptions of his condition and progress while hanging out with him.