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.