More Steps

As time passes Scott continues to make great progress.  The progress is hard to see on a day to day basis but, when you don't see him for two weeks or so and then have the opportunity to hang out with him, like I did last night, the progress is very clear.  The last time I saw Scott he was extremely agitated and confused.  Since that time doctors have been working with Jen to identify a medication that will help take the edge off but not make him too drowsy.  After a few weeks of trial and error, it seems they may have hit on a medication that is working.

Scott is still easily agitated - especially with loud noises, touch, and other sensory triggers.  But, he is better able to control the agitation and, as a sign of great progress, has even self corrected a few times and has apologized for his behavior.  Amazing!

Last night he was very conversational and was participating in the discussion Jen and I were having about Christmas.  He even interjected with appropriate questions.  At one point I asked him what he planned to get Jen this year and he replied, "it is hard because her birthday is so close to Christmas."  He is still confused and not fully oriented to the current time and place.  However it seems like he is less fixated on past events and beginning to talk more about the present and what is currently happening around him.

He is now able to come to standing without assistance and can walk around the house by simply grabbing on to objects for support as he goes.

It is still a struggle to get him to eat because, much like Scott was before the accident, he is simply not that interested in food.

All in all Scott is doing great and continues to make great strides.

Benefit Show Tickets Now on Sale!

Tickets are now available for the Scott Jones & Family Benefit and Talent Show. Two nights of great NC bands! All proceeds go to directly to Scott to cover rehabilitation a

nd round the clock nursing care that is not covered by insurance. Thank you to the many folks out there that are making this event happen.

More information can be found here:
http://www.facebook.com/events/112809528864051/175475735930763/?notif_t=plan_mall_activity

Also, people have asked about other ways to donate.  Scott's medical fund is an ongoing possibility.  There is a permanent link to it on the right hand side of this blog but you have to view it on a computer - not a mobile device - in order to see it.

IF you are viewing on a mobile device you should be able to view it here:

https://www.paypal.com/us/cgi-bin/webscr?cmd=_flow&SESSION=rwvKFP0yexAdKr8pFy07ALTU09IOAl4WgnswgbFqPKA6KMQuD2tUs6BBh2i&dispatch=5885d80a13c0db1f8e263663d3faee8d0b7e678a25d883d0fa72c947f193f8fd

The Latest

Scott has made much progress since the last post.  He continues to live at home with Jen and Floyd and the help of full-time nursing care.  Since the last post he has begun consistently eating solid foods, especially bacon, the food he eats most consistently.  We are hopeful that, as he continues to make progress with eating and self-feeding, his feeding tube can be removed.  At this time his feeding tube is used for occasional feedings (if he goes for a long period of time without being interested in eating) and for administering his medication.  

Scott has also made great progress in terms of his mobility.  He is able to get up and walk around with minimal assistance.  Yesterday he made two laps around the block with only Jennifer helping him.  His progress presents new challenges in terms of his safety at home.  For example, if he has a desire to leave the house he is now able to do that.  However, cognitively he does not have the ability to keep himself safe and make good decisions so, he has to be watched at all times to ensure that he doesn’t just get up and venture out.  

Cognitively Scott remains in a general state of confusion.  He can recognize familiar faces and can accurately recall some memories and experiences.  However, he is not oriented to current time and space.  For example, during a recent conversation he said he was 29 years old had a blue van and lived in North Carolina.  He doesn’t recognize his current home as his home and is often preoccupied with going home – most likely a home he recalls from a memory.

Scott has also entered a stage of agitation.  His agitation is definitely a sign of progress and is related to his increased awareness of what is going on around him. He has become particularly irritated with nursing and medical staff.  He is understandably annoyed at the poking and prodding because, at this stage, he doesn’t have the ability to understand who they are and what they are doing.  In addition, Scott seems to be experiencing heightened sensitivity to sounds and touch.  So, naturally he is much more sensitive to being touched by nursing staff and reports that just the slightest touching is painful to him.  His agitation peaked about a week and a half ago and he was transferred to the hospital so that doctors could run some tests.  Doctors determined that medically he is doing just fine so it was decided that he should be started on an anti-anxiety medication to help stabilize his mood.  Scott transferred back home again on Monday.  Now starts the process of regulating his medication by trying to strike the right balance between keeping him calm and yet preventing him from being so tired and groggy that his recovery progress is impeded. 

Although Scott’s agitation presents new challenges for his recovery, it is important to keep in mind that it does represent progress.  For reference it is helpful to refer back to the Rancho Scales (http://www.rancho.org/research/bi_cognition.pdf)  Scott is definitely experiencing the agitation described in level IV but, otherwise, falls somewhere in the range of level VI.

The Day to Day

Scott continues to make great progress at home.  He is now able to walk on his own.  He requires someone by him because he is still unsteady but, when he is up and about, he can walk on his own.  He is talking and conversational however he does remain in a state of confusion and confabulation.  For example, this weekend when I saw him I asked if he'd seen Andy and Andrea recently.  He told me that he'd seen Andy at the studio and then he proceeded to name other band members and people that were there -- Bob, Anthony, Chris -- and told me about what they'd been up to.  So, the details about his bandmates were completely accurate but, he was confused about seeing them recently at the studio and about the details of what they were up to.  Most likely he is remembering past events and confusing things that happened long ago with current details but, it is hard to know for sure.

Scott still has the assistance of 24 hour nursing care.  He also receives weekly visits from a physical therapist and an occupational therapist.  In addition to the visits that are covered by insurance, Jennifer has arranged for a physical therapy student to come work with Scott on other days.  The P.T. student has been amazing and Scott is responding very well to her direction.  She is coming on a volunteer basis right now despite Jen's best efforts to give her something for her time.  Also, Scott has been receiving craniosacral/massage therapy by a wonderful practitioner who at this stage is also volunteering his time.  The support and generosity from everyone, even people who didn't know Scott before the accident, has been truly amazing and is VERY appreciated.

Jennifer has spent a lot of time researching alternative therapies found to be helpful in TBI recovery.  In addition to the ones Scott has already been receiving, Jennifer has found that pure oxygen has been found to greatly stimulate brain activity and recovery.  Scott has an appointment to receive oxygen therapy at a hyperbaric oxygen chamber this afternoon.  This kind of therapy has been found to greatly assist in the progress of some patients who are recovering from TBI.  Hopefully Scott will be one of those patients.

At this stage the biggest challenge is getting Scott up and about.  He is unable to initiate activities on his own (a common outcome of this kind of injury), so it can be a big challenge to get him to moving.  Jen and the therapists continue to work on this with him because it is important for him to be up and moving around so that he continues to gain the ability to mobilize.

Scott had a great visit with good friends from the east coast, Abbie and Dave, a week ago.  This week his father-in-law is coming and also Amy and Kirk.  He seems to really enjoy having visitors to chat with and new faces to see, which gets him thinking and remembering - a great challenge for him at this point in his recovery.

Visitors can also be exhausting so, anyone wanting to visit with Scott should contact Jen first to let her know the days/times you are thinking so that visits can be staggered.

Settling In

Scott is home now.  His transition home has been very smooth, all things considered, and he, Jen and Floyd are settling in and adjusting to life.

For now Scott has full-time nursing care.  (Since this is not covered by insurance this is being paid for by all the generous donations from friends and family so THANK YOU!)  The nursing care has been invaluable to Jen since right now Scott needs assistance with prompting and completing his day to day activities.  He also requires constant supervision for his own safety but hopefully, as he progresses, the level of care and supervision can decrease. 

Scott continues to make great progress.  Since coming home he has begun eating again.  He regularly eats breakfast and dinner and, as his intake of solid food continues to increase, he should be able to transition off the feeding tube.  He is playing with Floyd.  Games such as tossing and catching a ball are such a win/win since it is a great way for Scott to continue to improve his motor skills while having fun with Floyd.  He even played a game of solitaire (with some prompting and assistance) during a recent therapy session. 

Scott came home with a walker and a wheelchair but both of those devices have been relegated to the basement because he prefers to walk around the house on his own.  He does, however, require close supervision while walking because at this stage he is still very unsteady.  The walker and wheelchair will wait downstairs until he is ready to start going for longer strolls out of the house.

Scott is feeling very conversational these days and loves to sit and chat about old times.  At this stage in his recovery his facts are confabulated and confused.  For example, he might recall an event correctly - like a show he has been to - but recite names of people who weren't there or recall it being in a different location than it was.)  Confabulation is common with this type of injury and it is a great sign that he is recalling so many memories. 

There have also been challenges to Scott being home.  As a natural part of his progress Scott has, at times, become very frustrated.  Jen maintains a positive attitude during these difficult periods but it is no doubt hard to see a loved one going through this and also to put it in to context for a two year old.  Nevertheless, it is a sign that Scott is progressing and becoming more aware of his surroundings. His frustration is a natural part of the recovery process.

Scott is ready to have visitors.  Anyone who is interested in stopping by to visit him at home should email or text Jen with some days/times you'd like to come by.

Scott is Coming Home

Tomorrow, Tuesday, is the big day -- Scott is finally coming home.  He has continued to make good progress at the nursing facility in San Leandro but, alas the hospitalization coverage portion of his insurance has run out and it is time for him to come home.  Jen has been working hard in the weeks leading up to his homecoming to prepare their house and has hired a home care nurse to help with round the clock care for his first month home.  We are all very anxious to see how Scott will react to being with family, seeing the pugs and being surrounded by all the familiar things in his home for the first time in six months.

Oysters and Bluegrass!

If you haven't already heard, time is running out to get in on a fantastic fundraiser being organized by Abbie, Dave, and others at the Ocean Grill and Tiki Bar in Carolina Beach, NC.  Here are the details:

Tickets are $100 per person and all money raised goes directly to Scott for his care and rehabilitation needs. Ticket includes admission to this private party with beer, wine, roasted oysters, prime rib & heavy hors d'oeuvres. Cash bar and no children, please. Live music by No Dollar $hoes duo. To request invitation/ticket, email info@oceangrilltiki.com. RSVP by October 1st. 910-512-2111 http://www.facebook.com/events/149051501903554/149972531811451/?notif_t=plan_mall_activity

A huge thanks to everyone involved with this amazing fundraiser!

Drum Roll Please

Last Saturday Jen, Floyd, Karen & Scott, and Andrea & Andy brought Scott's drums to the rehabilitation facility at the recommendation of his physical therapist.  Jen was a little nervous about how he might react because so far he has not wanted to play with his drumsticks.

Apparently, after the drums were set up, Scott began tapping on them with his hands.  They handed him his sticks and he immediately executed a perfect drum roll!  Jen was inside making sure the music was not going to be too loud and missed the whole thing.  Jen reports that, though he wasn't interested in playing much more that day, he sat there and enjoyed an afternoon of music with friends.

Scott transferred from the rehabilitation facility back to the nursing facility in San Leandro on Wednesday.  Jen has been working to get him back on a schedule there and get his therapies all set up.  I'll provide more details on his progress in San Leandro when I have them.

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.

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.

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!

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.

Scott Recovering Well

Scott's surgery yesterday was successful.  He now has a brand new fabricated skull bone.  Also, the surgeon was able to adjust his shunt which was apparently working but not draining off fluid fast enough.  He is recovering well and spent most of the day sleeping.  He will be in Redwood City for the next few days and they will likely move back to the skilled nursing facility in San Leandro.  Jen and Andrea spent yesterday afternoon touring other, closer, facilities.  In the end the fact that he can have his own private room and plenty of sunshine and outdoor space in San Leandro, seems very important for his recovery right now.

Update From Jen

The Latest, Straight From Jennifer:

Over the last two weeks we have watched as almost all of the progress that Scott has made in the last two months has faded away. Seeing this happen, and waiting for the medical professionals to rule out possibilities as to why this is happening, has almost been unbearable. Today we finally have a better understanding of what is going on. Scott has hydrocephalus which basically means that the fluid in his brain is not being drained fast enough and is building up pressure. Apparently the shunt is either not working fast enough or not working at all right now. This should be a very straight forward procedure to correct and can be done in conjunction with the cranioplasty surgery which will take place tomorrow (Wednesday) morning.

Two burning questions I had regarding the diagnosis were answered during a conference call earlier today with nurse Karen Getchell and Dr. Leslie Weiner (prominent neurosurgeon and father to Matthew Weiner):

1. Could this pressure cause permanent damage? This is unlikely. Once the fluid is drained the ventricles will shrink back to the size they were.

2. Is this our new starting point for rehab? Also unlikely. Correcting the fluid issue and replacing the bone flap should at least get us back to where we were two weeks ago maybe farther along.

It was a tremendous relief to hear this from Dr. Weiner. Scott's surgeon is extremely capable however, the manner in which she answers my many questions often leaves me either confused or devastated depending on the day so it is good to have alternate opinions.

This will be the second attempt at the cranioplasty (replacing the skull piece that was removed three month ago to relieve the pressure from the initial trama.) This time it will be with a synthetic plate that was created with imaging. Many say that having this plate in place pushes rehab forward more quickly. We are hopeful that this will be the case but trying not to get our hopes up too much. Slow and steady . . .or something like that will be fine.

So Kay and I will be in Redwood City on pins and needles in the morning anxiously awaiting the results of the surgery. Prayers, positive energy, candles, oh mighty Isis.

More Meals for Jen and Floyd

We've added more days to the meals calendar for friends in San Francisco who would like to pitch in (Thanks, Sam, for reminding me to update the registry). You can access the calendar at:

http://mealbaby.com/viewregistry/13533825

Please register on the site, then choose a day that you'd like to deliver a meal. Meals can be delivered anytime during that day - if nobody is home, please leave the meal on the front porch. Jen and Scott's address is listed on the registry.


For out of town friends who would like to help, we'll be posting more information shortly about a general donation fund which will be earmarked to cover extra medical expenses not covered by insurance, as well as continued care for Scott once he gets home.

A Temporary Setback

Scott's liver enzyme levels are extremely high indicating that he has an infection.  Doctors have yet to determine where the infection is, but they have been running extensive tests.  One of the tests revealed that Scott has Hepatitis A, a disease of the liver caused by the Hep A virus.  It is unclear whether he contracted this prior to his accident (perhaps traveling?) or whether he contracted it while in the nursing facility.  (Medical staff have made clear that Hepatitis A can not be spread from Scott to visitors.)  Doctors believe that this may be impacting his liver enzymes, but it seems that something else may be wrong as well.  Unfortunately, Scott is unable to communicate his symptoms and what he is feeling.

Over the last week or so Scott's condition has deteriorated.  According to Jen he is no longer verbal or even attempting verbal communication, he is not walking or participating in therapy, is extremely listless and appears to be unable to move the left side of his body.  We believe this is nothing more than a temporary setback, simply because he doesn't feel well.  We are hopeful that as soon as doctors figure out what is wrong, and are able to treat it, Scott will quickly regain all the progress he has made up to now.  Nevertheless, it is scary and very hard to watch this type of regression.

The good news is that there are no plans at this stage to delay his surgery which is currently scheduled for next week.

A Birthday Breakthrough

Happy Birthday to Scott!  Today Scott wrote the words "It sounds like" during his occupational therapy session.  This is the first time he has responded to having pen and paper in front of him and he comes right out with nearly a whole sentence.  Amazing!  It is a welcome breakthrough because, although progress is  happening, I know it can feel like it is happening very slowly (especially to Jen who is with him daily.)  His physical therapy is also going very well and with the assistance of two people supporting him he is able to walk down the hallway.  

Doctors put Scott on Depakote, a drug that is primarily used for seizure disorders, this week.  Scott is NOT having seizures (though that is a common occurrence in TBI cases).  Since the drug has been shown to have positive effects as a neurological stimulator, doctors wanted to see if it might help in Scott's case.  Unfortunately his blood levels are showing that it is causing too much damage to his liver so he will not be able to continue to take the medication.  The blood tests also showed that something else is wrong but doctors are not yet sure exactly what.  One possibility is gall stones so Scott is scheduled for an ultrasound this evening.  Hopefully they will be able to determine what's wrong very quickly and it won't impact Scott's upcoming surgery.

Slow and Steady Progress

Today was the first time I have seen Scott in a few weeks because I've been out of town.  He has made significant progress since the last time I saw him.  The differences are subtle and I believe not as noticeable to Jen who sees him daily, but to me, they seem huge.

He is much more focused right now.  He is alert, makes clear eye contact, watches intently when you are talking to him and appears very engaged.  This is a difference from just a few weeks ago when it seemed he had the ability to only hold that kind of attention for a few fleeting seconds before becoming distracted by something else.  Today Scott was focused more often than not.

He is responsive in conversation.  His voice is still faint and sometimes difficult to hear but he now engages in conversation.  Today we asked him if he wanted to go sit outside and he replied, "Yeah, that'd be fine."  Scott was not responding so directly the last time I saw him.  Then after sitting outside for about 10 minutes he asked, unprompted, to go back to his room.  When asked if he wanted to listen to one band or another he replied, "Either one of those is fine."  Some of his responses were confused, or perhaps we were just not understanding what he was trying to communicate, but other times (maybe 50% of the time?) he gave direct and appropriate responses to questions.  He even knew his birthday which incidentally is coming up in a few days.

His sense of humor is coming through.  I definitely detected some sarcasm in his smiles and also in some of his comments.  This is a huge difference from the last time I saw him.  Scott's true personality, though obviously there all along, was not so clearly showing through during the last visit with him.

Physically he looks different.  His hair is growing back in now after being shaved multiple times for surgery.  He has also gained some weight back, at least 10 or so pounds since the last time I saw him.  The milkshakes are working!  Unfortunately he is still not interested in eating solid foods.  He is on the feeding tube so he isn't experiencing hunger which is probably a huge factor in his lack of interest in eating.  At some point, probably not until after Scott undergoes his next scheduled surgery to replace his skull bone, they will experiment with turning his feeding tube off to see if it increases the amount of solid food he eats.

Though the changes are not drastic they are there and they are significant.  Scott is making great progress.

Update

My apologies for the long delay in updating the blog - work has been interfering with my life lately, unfortunately.  It also means I haven't had a chance to see Scott lately so I am curious to hear from the many others who have visited him recently - feel free to email me your comments to post or post updates in the comments. 

Scott is still in the post-acute care (skilled nursing facility) in San Leandro and what I gather from Jen is that the day to day has been pretty routine down there.  He has physical therapy every morning around 11 am and then usually speech therapy sometime after that.  Scott has continued to make progress - he is vocalizing much more, eating more solid foods (still the hamburgers and shakes and not interested in much else) and he is working hard in physical therapy too.  At this point he has taken some steps while assisted by the therapists.

Last week he was touching the side of his head where he has had surgery and asked Jen, "What happened?"  So, there is definitely some indication that he is becoming aware of the accident.  Jen has said that he also seems to be a little frustrated these days -- it could be that he wants to communicate more but feels unable.  Who knows?  But it definitely seems like a good sign that his brain is working hard to put all the puzzle pieces back together.

He has had many visitors over the last few weeks and even a puppy dog (which apparently you can bring if you have all updated vaccination records to show.)  This was his second canine visitor and again he responded really well to the dog being there and seemed very happy to see him.  Scott's friend Chris has also been here from out of town and visited with him daily. 

The daily commute is no doubt exhausting for Jen but for now it seems that Scott will remain in San Leandro for the near future.  He has to be able to feed himself (no more feeding tube) and be able to follow commands regularly before they will transfer him to the specialize TBI rehab facility so, that is the goal he is working towards at this point.

Hamburger and a Shake

The speech therapist has been working on trying to get Scott to eat more solid food, rather than simply relying on the feeding tube.  So far he has been pretty uninterested in it.  That is until his good buddy, Scott Renner, brought him a burger and a shake from In and Out burger.  He apparently scarfed down half a burger and a shake, his first real meal since the accident.  Since then Jen has been bringing him daily shakes to try and put a little weight back on him.  I'm sure that will start working in no time.

In other news, Scott stood on his own (without being held by physical therapists) for a few seconds during therapy this week.  The therapists believe he is capable of movement and are pushing him hard.  At this point it seems that he is having much more difficulty moving the right side of his body.  They believe that the difficulty he has moving is more to do with his body being inactive for so long and less to do with any neurological damage.  I'm not exactly sure what they base this on, and I suppose it really doesn't matter, we will go with it.  This is amazing, especially considering that doctors reported right after the accident that the primary trauma to his brain was in an area that impacts movement.

Scott continues to try and communicate and appears to be responding really well to all the visitors.  Jen believes he is very motivated to communicate with visitors and thinks he makes great progress with all the familiar faces around.

Scott's friend Anthony apparently also made a break through by putting a phone in Scott's hand last week.  As Jen says, "nobody likes to talk on the phone as much as Scott Jones."  He seemed very happy to simply have a phone in hand and even said a big "HELLO" to his mom and his sister Ashley.

Scott's next surgery is scheduled for June 20th.  During that surgery they will place an artificial bone in his skull.  We are all anxious for this surgery to happen and it is a great relief that it is finally scheduled.

First Steps

Scott has settled in to his new digs in San Leandro.  His days are starting to become more routine now, which is great after so many ups and downs, emergency procedures, scans, etc.  It finally feels like he is in a recovery phase.

He has great physical therapy staff at this facility who are pushing him hard.  They focused immediately on getting Scott up and out of the bed and by day two had him in a wheelchair.  By the end of the week, with much assistance, Scott took his first steps.  The physical therapists feel that he'll probably be mobile again before he is even cognitively ready.  So, again, close monitoring will be required to keep him safe if he is mobile before he is able to make safe decisions.

Unfortunately, as long as he is still without part of his skull, he has to wear a helmet any time he is out of bed.  He hates it.  He spends a lot of energy being preoccupied with helmet during therapy sessions and any time he is out of the bed.

He is not quite ready to participate during speech therapy...yet.  But, he is definitely swallowing, able to eat some pureed foods and even took a bite of a sandwich and swallowed it.  All this is helping him get some voice behind his words and he is definitely trying to talk and communicate.

Jason, Sean and Sandy spent several hours with Scott today.  They felt that he definitely recognized them and was happy to have some visitors.  They said he seemed a little frustrated with his inability to communicate with them.  They are pretty sure they heard him say something along the lines of, "My eyes and my head aren't in sync" and "is it awkward?"  As hard as it is to hear that he may be starting to become aware that something is wrong, it is also a very great sign.  They also got some good laughs out of him and, as usual, he was quick to start tapping his toes as soon as they put some music on.

Tomorrow he will be taken back to Redwood City for a neurology appointment.  They will check on his progress and, I think, will take out the sutures in his scalp.  Jennifer plans to talk to the doctors about when they will try and perform the surgery to put a replacement bone in his scalp.

Time For Visitors

Scott is now at the Kaiser Post Acute Care Center in San Leandro.  It seems that every transition gets off to a shaky start but he has now settled in to a nice room near a big sliding glass window with lots of light. Hopefully that will help him get his sleep schedule back on track.  He has a "sitter" to stay with him through the night and one is available to be with him when family or friends are not there during the day.

He is doing physical therapy once a day and has had two very good physical therapy appointments.  Yesterday they were even able to hoist him to a standing position and today they plan to try to transfer him from his bed to a wheelchair.

It is unclear how long Scott will remain at this facility.  The ultimate goal is for him to transfer to the rehabilitation facility in Vallejo.  He will not be eligible for transfer to there until he can follow verbal commands and is off the feeding tube and able to feed himself.  So, he has lots of work to do until then, but he is doing it.

Now is a good time for Scott to have visitors.  Having weekend visitors who will come and sit with Scott for a couple hours at a time would be very helpful.  It will allow Jen to take a little break from the hospital so that she can be with Floyd.  It seems especially important for Scott to have friends and family around during the weekends to answer questions for staff and, since staffing is reduced during that time, to make sure that Scott's needs are being met.  And, most of all, so that Scott can see a familiar face when he is awake.  For this weekend, if you are interested in visiting you can email Jen (godboldster at gmail dot com) and let her know what day/times might work for you.  Visiting hours are 11 am until 8 pm.  I believe there are a limited number of visitors allowed at one time so, it may not be possible for everyone who wants, to be able to visit this weekend.  But, there will be plenty of more opportunities in the coming weeks and I anticipate we will be able to set up more of a formal schedule or calendar once we figure out just how the visiting is going to work.

First Word

Scott has been at the South San Francisco Kaiser Hospital since Friday night.  He has a private room with a designated "sitter" and, because the hospital is not as busy as SF General or the Neuro Care Unit at Redwood City, he has received individualized care.  He has participated in physical therapy daily (because they are able to come when he is awake, rather than on a rigid rotation schedule) and he has also received speech therapy.  Scott is trying to talk but no real sound comes out.  This is partly because he has not had any food or drink or any use of his throat muscles since the accident.  On Saturday Scott passed the "swallow test" which means he is now able to swallow it is safe to give him things like ice chips and sherbet and to start to reintroduce pureed solid foods.  These sensations will make him use those muscles again and will hopefully assist in vocalization.  It seems to be working already as today he said his first word - JUICE!

Scott continues to progress physically and is sitting up for brief periods of time in bed with assistance.  He is also awake for longer and longer between rest periods.  Jen is still struggling to prevent medical staff from sedating him.  She has succeeded in getting a doctor's order stating that he should only be sedated if necessary but that standard is pretty ambiguous.  Despite this direction, in an effort to help him sleep or make him comfortable, Jen is finding that staff still sedate him frequently.  Unfortunately, the sedatives throw off his sleep and wake cycles and make it very difficult for him to get the therapy he needs during the daytime.  Eventually, when Scott becomes cognizant and can speak and advocate for himself, this will not be an issue.  Until then, Jen will continue to be very vocal and demand that they stop sedating him.

Despite the great care he has received at the hospital, it is time for him to move down a level of care to a skilled nursing facility.  Doctors are planning to transfer Scott tomorrow to a facility in San Leandro.  Medical staff have assured Jen and Kay that the facility in San Leandro is better able to receive Scott and manage his level of care then the facility he was originally transferred to last week.  We shall see if in fact that is true, but for now we remain optimistic.  There is greater access to rehabilitation therapies in the nursing facility.  So, ultimately it will be a very positive move for Scott even though it means he will be further away.

Great Progress and a LONG Day

Yesterday was a day of great progress for Scott.  He had long periods of awake time and seemed more alert and cognizant of his surroundings then ever.  He is tossing and turning and moving all around.  He is reaching for he bed rails and attempting to pull himself up.  He is clearly trying to get up.  Jen and I were able to sit him up for a few minutes in bed for the first time ever.  He is reaching for Jen and Kay's hands and he and kisses them!  He can clearly distinguish who they are, as he didn't attempt this with me.  Also, when I left him yesterday and said good-bye, "I'll see ya soon" he raised his hand, gave a big thumbs up, and mouthed "bye Penny."  He knew exactly who was with him.  Also, when Jason visited later in the evening, he seemed to clearly recognize him and gave him a big wave when he arrived and when he left.  This is amazing progress.  It is no doubt due to healing and time.  However, it may also be due to the fact that he was basically unmedicated all afternoon yesterday as a result of his transfer.  We suspect this is the case because a nurse indicated to Jen, prior to his transfer, that Scott was becoming very active and that she had given him percocet to keep him safe in bed.

The question of how exactly to keep Scott safe and yet allow him to be active and alert to facilitate his recovery, is at the forefront right now.  That new challenge quickly arose after transferring him to a skilled nursing facility.  It was immediately clear that he was not safe there and it was a very, very scary transition.  When I arrived to the facility around 3 pm Scott had just arrived and Jen and Kay were wide eyed.  Jen stated they left him with the call button in his hand and told him to press it if he needs anything.  Scary!  Meanwhile, Scott his awake, smiling, grabbing the bed rails, and pretty close to launching himself right over the side of the bed.  Scary! (And exciting!)  Jen immediately got to work and within an hour or so they had made some alternative plans to move him closer to the nurses station, arrange for a "sitter" to be with him when family and friends are not there, place some motion sensors on him, etc.  Despite these efforts, ultimately the doctor at the facility determined that he was not safe there and should be moved to a higher level of care in a hospital.

Last night Scott was transferred back to a hospital, Kasier South San Francisco, and as of 10 pm he, Kay, and Jen were still in the ER waiting for them to decide exactly where to place him.  It was a very LONG day.

Over the next few days medical staff will determine what level of care Scott needs and where to safely place him.  Medically, he is ready for skilled nursing facility level of care.  Cognitively, he is not yet able to be directed to be safe nor is he able to advocate for himself.  Ultimately it seems that the "sitter" idea - having someone there with him at all times to make sure he isn't going to hurt himself and to speak up for his needs - is a good one.  Our concern is that if he remains in a higher level of care (or even in a SNF without an advocate) they may simply try to medicate him to keep him safe.  It is understandable why they would want to/need to do this but it seems completely counter to recovery from this kind of injury where it is crucial for his brain to be able to think and process clearly and we want him to start to physically regain his strength.

Upcoming Transfer

Scott is scheduled to transfer to a skilled nursing facility tomorrow.  Jen and Kay toured one facility to get an idea of what to expect.  It seems there are a number of places he could go - and after some research Jen was able to provide a prioritized list of places she would like him to go to - but ultimately he will go where there is a bed available (which changes daily).  As of this afternoon medical staff were unable to say where or when on Friday he would go.

It has been a relatively quiet few days around the hospital which, after multiple procedures last weekend, has been a welcome change.  Scott is resting a lot but was awake a good part of the afternoon today.  He was able to participate in physical therapy and was awake during visits from Jen, Kay and a friend and neighbor, Jason.  In fact, when Jason was leaving the hospital, Scott even gave a wave.

During his awake time Scott is looking around and is focusing his attention on things.  He is not yet able to communicate, but this will come.  He is starting to show expressions of some emotions and Jennifer said yesterday he was even tapping his foot to the music.

Preparing for Transfer Again

Scott's mom, Kay, is back in town and her, Jen and Floyd have temporarily relocated to a hotel near the hospital.  This will allow them to visit during the off times when Scott is most awake and alert. 

Speaking of awake and alert, on Monday night nurses brought a dog in to sit with Scott.  He immediately perked up and was very happy to have the companion to sit with on his bed.  Jen is trying to find out how often they can bring the dog in.  Maybe she can just sneak in one from home?

Scott will not undergo any more neuro surgeries for a few months until they replace the bone plate over the part of his skull that was removed.  Until that time he does not need neuro care so doctors are deciding where he will be transferred in the interim.  He may go to the Kaiser hospital in San Francisco temporarily but he will eventually be sent to a skilled nursing facility.  We are hoping it will be one that is close to SF since this will be a time when he can start to receive visitors. 

A Private Room

Scott is now out of the ICU.  For the first time since the accident, he is in a private room (not b/c of anything related to his condition, simply because there was one available when he was transferred back  to the Neuro Observation Unit and he got it.)  Jen thinks the quietness of the private room will help his recovery and it allows her to play some of his favorite music for him once again.  

Ups and Downs

It has been a roller coaster weekend.  Scott went in yesterday to have the bone removed again and, following the surgery, would not wake from the anesthesia.  He was taken to the ICU and was left intubated again.  Needless to say, it was a very scary afternoon.  I'm sure for Jen it almost felt like we were back to where we were five weeks ago.  Luckily, he started to show signs coming out of the anesthesia by last night and by the time Jen had to leave he was moving around again and trying to open his eyes.

Doctors are closely watching the level of fluid that has started building again and are monitoring the pressure on his brain.  They have inserted an additional drain to relieve the pressure.

Today Scott remained in the ICU but doctors were able to remove his breathing tube.  He is opening his eyes and he gave big smiles to Jen, Andy and Andrea reminding us all, he is doing well and fighting hard.

More Surgery

Scott is in surgery right now to have the bone flap removed again.  It turns out that tests of the bone (which are apparently can't be conducted any sooner than right before they use the bone again) showed that Scott's bone has become infected.  Now it must be removed.  In addition, the CT scan from this am showed increased pressure in Scott's brain since the bone was replaced.  Thus, the surgeon indicated that given the pressure, it would need to be removed anyway.  The neurosurgeon estimated that they will wait about three months to attempt the surgery again.  Next time will be a synthetic piece of bone since the real one has become infected and can no longer be used.

Surgery Went Well

Scott is out of surgery and the neurologist reports that it went very well.  Apparently they are not always able to return the original bone once it is removed but in Scott's case they were able to do so.  This should be the last major procedure that he requires in the near future.  Now it is on to recovery!

Preparing for Surgery

Scott is scheduled for surgery tomorrow afternoon.  Doctors plan to replace the "right bone flap" that was removed to reduce pressure from swelling in his brain.  Doctors are anxious to get the skull bone back in place in hopes that it will cause his brain to shift.  (His brain apparently shifted some as a result of swelling and placing the skull bone back on may trigger it to shift back.)  This surgery is also good news because Scott is not keen on wearing a helmet.  Until Scott has this bone replaced he is required to wear a helmet if he out of bed.  Jen requested that the nurses try to move him to chair during some of his awake time but, apparently Scott fought off the nurses when they attempt to put a helmet on him.  Maybe the helmet will not longer be required when the bone is back in place and healed?

Scott is starting to be awake a little more often.  Unfortunately, it seems the times he is most awake (early morning and again in the evening) are generally not the times people are able to visit.  By the time Jen arrives in the morning he is usually sound asleep again.  This is a bit frustrating, because it means that he is also asleep when physical therapy and speech therapy come by to work with him.  Also, Scott has not been tolerating the liquid diet.  It is difficult to tell at this point whether it is the type of food or the quantity they are giving him.  The doctors are trying to work this out through trial and error.  These are just a few minor obstacles along his road to recovery.

Lots of Hope

Yesterday, Scott responded to the question "What is your name?"  This is pretty amazing.  He has now responded appropriately to questions four times over the past few days.  This signifies that those functions in his brain - hearing, processing language, coming up with a response and vocalizing, are intact.  Great news!  It may take some time before he has those skills fully at his disposal but, they are in there.

Jennifer and I had a great meeting today with a friend, Nerissa Ko, who also happens to be a Neurologist at UCSF.  She knows Scott's doctors and was able to contact them prior to our meeting and get some information about his case.  She was extremely helpful in answering questions and setting some expectations for what lies ahead.  Some points I took away from our two hour long meeting with her:

-- Scott is out of a coma.  The fact that he is able to respond signifies that he is no longer in a "comatose" state.  This is great news, as there is some indication from what I've read that the longer one remains in a coma the harder the recovery process.  The fact that he is officially out of a coma is not entirely obvious when visiting him, he sleeps a lot and when awake seems like he is far away.  However, Nerissa described his current state as being caught between two states of consciousness.  She has reported that patients who recall this state later describe it like being in a fish tank - you can see out, but its really blurry and you can't really tell what your looking at, sounds is muffled and not entirely clear, you think you are dreaming and are inclined to just close your eyes and go back to sleep.  She impressed upon us the importance of trying to bring him out of this state by bringing familiar sounds, smells, voices, all of which Jen has been doing.  She said that, with assistance of nursing staff and others, we can take it further but trying to sit him up in a chair during the visits and trying to get him on a sleep/wake schedule.

--It is impossible to tell anyone's prognosis at this early stage.  This is something that other doctors too have told us, but Nerissa explained that any kind of prognosis is only possible about six months after the accident.  Even then, she stated, people end up defying those guesses.

--Scott is progressing well.  It has been very difficult to gauge where Scott's recovery is and where he should be.  It seems that no doctor has really given a straight answer to this question.  It was helpful to hear from Nerissa that she was actually surprised he is already out of the ICU.  She was very encouraged by the progress he has made so far and stated those were all very good signs in terms of potential for recovery.  Beyond that, it seems impossible for anyone to say any more at this stage.

--The hard part is yet to come.  Nerissa talked a lot about getting prepared for when Scott comes home.  She said that he will not be sent home unless he can physically complete certain tasks on his own.  I got the impression the physical part might come more quickly than the cognitive part -- she said that the acute rehabilitation process which they are already discussing will likely only last weeks (not months).  Thus, there will be a lot to think about in terms of safety when he returns home.  Doctors and social workers have already talked to Jen about the fact that he will require 24 hour a day care and supervision.  For example, if Scott has memory impairments and/or temporary forgetfulness (which can be common in TBI patients) Jen will not be able to leave him alone to go walk the dogs around the block or run to the corner store.  It is way to early to anticipate exactly what this will mean in Scott's case but hearing Nerissa describe the inevitability of it in more detail made me realize that the transition back home, which we are all so anxious and excited for, will also be very challenging.

Another Quiet Day

Jen, along with dad and Jean, spent the day at the hospital with Scott.  It has been a very quiet day for him and thus far.  His heart rate has been elevated today and its not clear exactly why.  He may be in pain (they have provided additional pain medication), may be uncomfortable, or it may be simply because the room so warm.  (There are several other patients, visitors, nurses, etc. in the Neuro Observation Unit room he is in now and it makes for a pretty toasty and sometimes busy atmosphere.)  Jennifer has been able to bring his heart rate down somewhat by applying ice and cold compresses to his forehead.  The nurses have given him a fan, which also helps.  It doesn't appear that this is too much cause for concern but Jen plans to discuss it this afternoon with medical staff.

A Big Thank You

The hospital called Jen this morning to tell her some momentous news - Scott whispered "thank you" to one of the nurses caring for him.  Amazing!  When we finally arrived in Redwood City he was wiped out, having also had some physical therapy this morning.  He remained quiet and rested most of the day.  Jen said he had a few smiles for Andrea and Andy this afternoon but mostly remained quiet and rested.

Meals for Jen and Floyd

Hey everybody,

We have some information for those of you who would like to help out with meals for Jen and Floyd. For people in San Francisco, we've set up a registry at:

http://mealbaby.com/viewregistry/13533825

Please register on the site, then choose a day that you'd like to deliver a meal. Meals can be delivered anytime during that day - if nobody is home, please leave the meal on the front porch. Jen and Scott's address is listed on the registry.

For those of you who are out of town, we recommend purchasing a gift card from Munchery. Just fill out the form at https://www.munchery.com/gifts and have the gift card delivered to Jen's email - godboldster at gmail dot com.

If you have any questions, or other ideas for how people can help out, please email me at jason at projectzero dot com.

Thanks!

j

Let the Feeding Begin!

Scott's feeding tube was turned on this morning at 7 am...finally!  It has been a very quiet day at the hospital, with him sleeping most of the day and recovering from his two recent surgeries.

Update

Jen is at the hospital now and said that Scott is very alert, with eyes open, and looking much better today. It seems that relieving some of the pressure on his brain has made a big impact.  He is scheduled for surgery today to have the feeding tube installed.  They will not be able to administer food through the tube for another 24 hours after the tube is placed in his stomach but doctors have assured Jen that he is fine since he is still receiving the IV fluids.

Scott is Out of Surgery

Scott is out of surgery now and doctors were able to complete the procedure to place the shunt in his skull.  This is great news!  The shunt will allow for fluid to be drained and is apparently much less prone to infections and complications than the original type of drain he had. 

Now its on to the feeding.  Scott's neurosurgeon is meeting now with the GI specialist to figure out how to quickly and safely begin feeding Scott.  Jen is hoping to meet with them soon to get this issue resolved tonight.

More Procedures

Scott has settled in to his new digs in Redwood City.  Doctors there are concerned about the increased build up of fluid and decided yesterday to install a shunt to relieve fluid buildup, swelling, and pressure.  Scott was scheduled to undergo the procedure last night.  Unfortunately, Scott's blood pressure dropped and, as a result, they were unable to complete the surgery.  They were able to install a small drain in the meantime.  Scott was stabilized and transferred from the critical care unit back to the ICU.  He remains in ICU today.

We are all concerned about the length of time that Scott has now gone with out a feeding tube in place.  Today = day 5.  (The tube which was inserted in his mouth and extended down to his stomach was removed on Sunday in anticipation of his transfer.  However, it took a few days for him to transfer and the tube was left out.  Since arriving at Kaiser Redwood City Jen has been asking and asking when the tube will be replaced.  She was told they wanted to evaluate his ability to swallow first, and wanted to explore other options, but thus far staff have not replaced the tube.)  He is scheduled for surgery this morning at 10 am to have a gastric tube placed directly in to his stomach.  Given the difficulty he had under anesthesia yesterday, it is not clear whether they will attempt this procedure today or not.

Making sure that Scott starts getting fed has become a source of great stress.  Jen believes, and I certainly agree, that Scott is having a difficult time tolerating these procedures right now because he is hungry and does not have his full strength.  She and my dad are at the hospital together today and she says she will refuse to leave tonight until medical staff find some way to administer nourishment to Scott.  I'm very hopeful it will get resolved today.

Scott has Transferred to Redwood City

Well, after all the back and forth, doctors decided to transfer him tonight to Kaiser Redwood City.  They have neurological specialists in the Redwood City Hospital and they will be able to treat Scott long term.  Jen and Scott's cousin, Barry, travelled down there tonight to see him after he was transferred and settled in.  She is hoping to be able to meet with his new team of medical staff tomorrow.

Transfer Delayed

Jen just received word that Scott's transfer will be delayed at least another day.  Doctors are concerned that the fluid isn't draining as quickly as it should and it is beginning to pool in some areas so they would like to keep an eye on it for another day before transferring him.  If the fluid continues to pool, it will increase pressure on his brain and they will have to put a shunt in to relieve some of fluid and pressure.  Hopefully they will not have to do this because it is possible that the problem will just correct itself with enough time.

Since his transfer has been delayed doctors will be inserting a gastric feeding tube but unfortunately they will not be able to do so until tomorrow.  He is on IV fluids and is hydrated.

On a very positive note Scott had his first day of physical therapy.  I wasn't there so can't say for sure what happened but it sounds like they worked on moving his limbs around, triggering some key muscles.  The nurses said he responded so well that he nearly crawled over the side of the bed!  He has also started moving his left arm some too.

Still Waiting for Transfer

We are waiting for the final sign off on Scott's transfer.  They decided to perform a final CT scan this morning to determine if transfer was safe and whether or not he needed additional neurology care.  It has been a nerve-racking process, waiting for transfer, because they removed his feeding tube on Sunday in preparation for the move.  He is still hooked up to liquids but we are very anxious to get him settled in the new location and get him back on his feeding tube.

Preparing for Transfer

Today doctors removed the fluid drain which started the transfer process for Scott.  This is bittersweet news.  On the one hand, after two weeks in their care, doctors at SF General finally feel he is stable enough for transfer to a Kaiser hospital, which means his condition is progressing and is very good news.  On the other hand he will no longer be located a few blocks from his home which will make commuting back and forth more difficult for Jen.  He will either be moved later on tonight or tomorrow morning and is expected to go to the San Francisco Kaiser Hospital.

In other news medical staff attempted to place a cap on Scott's head to keep him comfy and he reached right up and took it off.  Jen said he has also been trying to mess with the oxygen tubes in his nose and other little things that appear to be irritating him -- all good signs of responsiveness!

Breathing Tube is Out

Yesterday doctors removed Scott's breathing tube.  This is a big step.  He looked much more comfortable  without it.  The swelling continues to go down and the next step will be removing the fluid drain which, as I mentioned before, will signify that he is ready for transfer.  He is still moving around in his bed, primarily his right side and opening his eyes and looking around.  As of the time I left the hospital he had not responded to any voice commands yet.

A Day of Rest

Friday was a day of rest for Scott after all the progress made the day before.  He did not respond to voice commands but, I think that maybe how progress goes - two steps forward one day, one step back the next.  He is still opening his eyes and looking around the room.

The results of the CT scan show that he is draining fluid on his own.  Doctors have the fluid drain clamped for now but have left it in just in case.

They are talking about trying to remove the breathing tube today, and continue to seem very anxious to get it out.  I understood previously that they did not want to take it out until he was awake enough and responsive enough for nurses to be able to prompt him to take a deep breath.  It doesn't seem like we are quite there yet so I am not clear how they are able to remove it now.  The doctor did indicate that he breathing has leveled off and is at a healthy and normal level so perhaps they are just feeling confident about where he is with his breathing and are not concerned about needing to wake him to take a deep breath.

Once the breathing tube and the fluid drain are removed Scott will be transferred to another facility.  We aren't exactly sure where that is yet, it will depend on his precise needs.  If he needs access to a neurosurgeon he will be moved to a hospital in Redwood City.  His transfer could happen as soon as early next week.