Paul is Home

So I am happy to say that this will be the last post on the blog.  Paul came home yesterday and is starting to settle in.  Now the real work starts but it is hard to believe only five weeks ago this process began.  The goal was to untether the spinal cord and hopefully eliminate the spasticity and ideally the pain too.  The spinal cord is completely untethered and the spasticity and pain are greatly reduced.  The doctors have told us that the healing could take about a year before they make any definitive pronouncements but the initial results are very positive.  It is amazing to see the progress Paul makes from one day to the next.  I know Paul is very grateful to all of the people at NIH and Adventist Rehab who made this a reality.  He is especially appreciative of his friends and their support.

Long Time No Post

Sorry it has been awhile but no news is good news right?  Paul is doing very well.  His progress was slowed down a little bit by the blood pressure/pain thing last week but this week it has been full steam ahead. I would say that if Paul had to give out an award it would be to Angie his Physical Therapist.  She is fabulous!  She is so positive and creative.  She is also six weeks away from delivering a baby boy and you would never know it.  She goes home at night and creates little devices that will help Paul do things.  She is passionate about what she does and we all greatly appreciate her.  She also intercedes if there is a "glitch" in the system somewhere.

Paul has been working on several things including transferring from the bed to the chair, sitting up, stabilizing his trunk, etc.  The list goes on and on.  And Paul is tireless.  His tenacity is amazing and he works very hard.  While he looks at things as small steps I am constantly surprised at what he is able to accomplish.  One day he just starts to try something and the next day he has mastered it.

He has daily PT, occupational therapy and recreational therapy.  His schedule has been adjusted so that he now has time to actually wake up a little bit in the morning before he starts his rigorous schedule.  He welcomes visitors.  His schedule has become a bit more regular so if you can ever stop in for lunch, let him know.  He generally wraps up around 5 p.m.  We are putting together a schedule of visitors and if you have a day you'd like to go see him, let me know (brownsuzy@verizon.net).

We think he'll probably be at Adventist another 2-3 weeks and then it is back home to continue outpatient rehab - probably at Adventist and then eventually back to Valerie's.  We know he can't wait to get back there to see everybody!  He's got a lot of good stories to share.

Thanks for all of your good thoughts.

Things are going along about as expected although we've hit a little snag.  Paul has what is called

Autonomic Dysreflexia or Hyperdysreflexia

Patients that are most at risk for this condition are those with spinal cord injuries above T6. This tends to occur after the spinal shock phase. Autonomic hyperreflexia occurs because nerve messages that were once able to go up the spinal cord to the brain are blocked

Some of the symptoms include severe pounding headache, high blood pressure and sweating above the injury site.  These are the symptoms that Paul has had and had at NIH.  Dr. Sheehan diagnosed this pretty quickly and that will slow down the degree of pt a bit.  The biggest concern is the high blood pressure.  Paul's blood pressure is usually pretty low but when he gets some pain in his neck his blood pressure goes through the roof.  His PT has added some analgesic tape to his back and neck to work on the pain.  As that improves, his pt will increase.  This is not uncommon but something that needs to be monitored closely.  Since he has not had this problem before, Dr. Sheehan thinks it will resolve pretty quickly.  More PT will be added as the situation allows.  

We met with Paul's "team" today.  Adventist has a great approach to their rehab and once a week there is a team meeting with his physical therapist, occupational therapist, physiatrist (Dr. Sheehan who heads up the team and is the main reason we are at Adventist), nurse, social worker, etc.  It is a quick meeting but helps us understand the plan and gives us an opportunity to ask some quick questions.  Dr. Sheehan also comes by daily to see Paul.  Access to Dr. Sheehan is wonderful and critical so we are very lucky that Paul is at Adventist.

Paul had a great visit from Valerie over the weekend.  To say she has been his physical therapist for the last four years would be a gross understatement.  She has been his champion, his cheerleader and friend.  She was able to give Paul some very encouraging news about his flexibility and prognosis.  It is hard not to try and fast-forward the process but (we hear) patience is a virtue.   

If you would like to visit Paul, please do.  Just send him a text and he'll get back to you when he knows his schedule.  If you can also let one of us know when you are going that would be helpful so we don't plan on being there at the same time.  

The Big Move

Wednesday was more great rehab and then Thursday - MOVING DAY!  It is on to Adventist Rehab.  It may take a few days to get settled in as they learn about Paul's needs.  They had nine people being admitted yesterday so it was kind of hectic.  And leaving the warm, loving arms of NIH was bittersweet.  Paul had some fantastic nurses and we couldn't be more grateful for their care.  They were wonderful.  Too many names to mention but Victrie and Robin were two of his favorites.  Francis was also great (even though she attended St. Johns - ha ha).  They are all pictured below and have already been invited to the Beulah Beach Club party.

So who wants to visit?  Here is the drill.  Paul will have 3 hours of PT a day.  He will know his schedule around 6 p.m. the night before. Sooo - send him a text if you would like to come visit.  Please don't just "stop by" unless you hear from him. Keep in mind that Paul has a roommate so wild parties are out and he wanted me to make sure to mention that the facility does have some religious overtones so we need to keep that in mind.  I'm not sure what he thinks you guys are going to do but I'm guessing some of you must be pretty rowdy :)  Visiting "hours" are over at 8 pm so that people can get a good night's rest.  Their day starts very early and they plan on completely exhausting him.  When you know you  are going to visit, please let one of us know so we won't be stepping on your time or come to visit when he already has a visitor.

Some of you have also asked what you can do for Paul.  Visits will be great.  He also could use a few pairs of gym shorts.  As you know, Paul is usually a snappy dresser but the best "outfit" for PT is gym shorts and t-shirts.  So if you are so inclined....

Thanks for all of your kind words for Paul.  I've been reading them to Paul as he doesn't have Internet access just yet.  He does try to check his phone so texts are good too.  He may not answer depending on how tired he is but know that he greatly appreciates every one of you.

Great Day!

I want to start by thanking everyone for their positive "vibes" coming to Paul.  He has really been  lifted by your kind thoughts and encouragement.  His attitude has been pretty positive and he worked like a horse today!  He did spike a fever overnight but not too high and it came down with some Tylenol.  But the catheter had to go and go it did after PT.  And go HE did so all is well :)!



After an early (6:45 a.m.) morning MRI where it was confirmed that everything is as it should be and the spinal cord and fluid are all doing what they are supposed to be doing, he had a busy day culminating in an awesome PT session.  Paul would not slow down.  After sitting on the edge of the bed for a bit (the first time since his surgery) he used the Lite Gait (not sure if the spelling is correct but it is a cool device that helps him stand.  It can support his weight as much or as little as he needs it).  Now please ignore his hair because it would make him crazy but note the posture and the fact that he is not using the Lite Gait for support at all.  And this was the first attempt and my phone ran out of juice.  He stood two more times (although the therapist started to unhook him and Paul said, "wait a minute - we are going to do this again") and each time he stood longer, taller and stronger.  The neck brace is just being used to help support his neck as it gets stronger (from the surgery).  He actually tossed that one within about 5 minutes of getting it on.

There is talk of Paul moving to rehab pretty soon (maybe tomorrow or Thursday).  His appetite is good.  His spirits are up.  His will is strong.  He had no pain today other than a slight headache (which is probably a result of the fact that he didn't eat from about 9-3 because of all the activity).  And no spasms!! Yippee.  He also had a great massage today (although apparently no match for Rita) which got some kinks out.  He loved it but likened it to being in a bar fight.  A "good" bar fight.

Tom got Paul some device for his phone so he can spend some time on the phone without it being much of a hassle.  He was probably too tired today to call anybody but tomorrow should be different unless he moves.   He gets tired talking on the phone but he doesn't hesitate to tell people that the conversations will be short.

Things are looking very good.  We still have a long way to go but we are getting there.

Quiet Weekend

Things have been going pretty well but we have had a few bumps in the road. That is to be expected.  The good news/bad news is that Paul still has his catheter in.  There was some confusion about that between the two surgeons but the head guy said leave it in and let him heal.  As you may know, there is some risk of infection with leaving a catheter in.  The good news is with all of his little helpers watching his every move, they were able to see something in the urine before he actually spiked a fever and get him on Cipro right away.  So while yes, he had an infection, it was kicked almost before it started.

Today Paul was out of the bed and outside a couple of times today.  They have this really cool lift to get him out of bed which kind of takes him via sling to the wheelchair.  It is a lot less stressful on his body than somebody trying to lift him.  That saves his energy for PT which will start up again tomorrow.  The goal is to get him to the point where he can withstand 3 hours of therapy a day (not all at the same time) so that he can move to rehab.  If I would have to guess I would say Thursday may be his moving day.  Now is when it gets really tough because it is all up to Paul.  It is going to be painful and exhausting but you know Paul is determined.  At times he gets a little frustrated and thinks his neck can't withstand the work but his doctor says it will be okay.  I can't imagine how hard it must be to 1 - do the work and 2 - not be a little freaked out when you feel some weird pain.  There is a lot of mind over matter that has to go on here which is easier said than done.  If you can imagine the pain Paul has been feeling, literally for years, and then having some pain or tingling now and trying to convince yourself that it isn't going to lead to something else.  But that's what he has to do.  Easy for me to say.

If you are reading this blog, please leave a message for Paul.  He loves seeing what people have to say.  You all are his biggest cheerleaders and he appreciates hearing from you on the blog.  It is still a little challenging for Paul to talk on the phone so don't be concerned if you don't hear from him or if he doesn't answer the phone.  Recovery is the main goal right now.  Leaving him a message here is the best thing right now.  Hopefully when he gets into rehab he will be able to have some visitors but we'll have to see what his schedule is like.

Carole goes home tomorrow and I've just got to say what a tremendous help she has been.  She has spent the night at the hospital; coordinated with the nurses; been Paul's constant advocate; talked him through many situations; been his constant companion; etc.  To say Paul is blessed to have her in his life would be a gross understatement.  It will easily take the five of us to try and fill her shoes.  Paul has also had so many great nurses at the NIH - Tina, Robin, Victory and Nanette to name a few.

More later in the week.

Continuing Progress

Paul continues to get stronger.  It is hard to believe that his surgery was just a few days ago.  The surgeons, especially the head guy, Dr. Heiss, are very happy with his progress.  In fact, when they come in to check on him they are suprised at how well he is doing.  We've felt from the beginning that Dr. Heiss is very guarded in his prognosis.  We know all doctors don't make promises but he plays it very close to the chest.  So when we get a raised eyebrow and a smile from him we consider it a huge victory.  He is a great guy and has been extremely pleased with Paul's efforts and what he is able to do already. 

Paul's pain is minimal and is mostly due to the massive amount of PT he is ALREADY doing.  He spent over an hour there yesterday riding the bike, working his arms and using the bands.  His neck had been bothering him and when he pointed out the spot to Willy (one of the amazing PT guys), Willy identified a huge knot in his neck, probably a result of the anxiety and stress he is under.  Willy worked it out and Paul felt like a new person.  Paul's will and fortitude are amazing.  He is a great advocate for himself.  His nurses have been great. 

Today PT will come to his room and tomorrow he gets a day off from PT.  There is talk of him "checking out" early next week at which point he will move to a rehab facility for some intensive PT for a few weeks.  We all still look at eachother and are amazed that his surgery was just on Tuesday.  We are so lucky to have NIH literally in our backyard.  I personally am so greatful to Brian Oliver, an NIH scientist, who found the study for Paul.  But I have to think that Grandad (Paul's Dad) had something to do with all of this.  He was our first family member at NIH and without his experience there we probably wouldn't be aware of all that is available at NIH.  I swear he is pulling some strings up there in Heaven to make all of this work.

More later...

Great Exhausting Day

Pretty good day all in all.  Carole spent the night at the hospital to keep an eye on Paul and help him.  He went without pain meds from 10 pm to 5:30 am.  He is really not experiencing much pain except for in the incision site.  We did hit a "bump" overnight when he spiked a fever but that was brought down with Tylenol. Chest xray and CBC showed no infection and clear lungs and the fever was gone as of this afternoon.  Apparently this can happen with surgery and is fairly normal.  Paul had a huge pt day.  He was put in a high backed wheelchair and actually used his legs to pedal a bike for 10 minutes then worked on both arms.  Can you say, I just had surgery two days ago?  Incredible.  I think Paul is afraid to believe this is really happening.  But again, this is a marathon not a sprint.  It was an exhausting but good day.  Some of you may have tried to call but he is really trying to focus his energy on his rehab so don't be concerned if he doesn't answer the phone or call/text you back.  He really does need to be singularly focused right now and Carole is providing plenty of care, love, support, humor and guidance.  The "rest" of the Browns (Carole is an honorary member) tried to leave him alone today. 

What a Difference 24 Hours Makes

I'm hoping this is my last post as Paul will probably be able to blog for himself soon.

For a guy who probably got about 2 hours of sleep last night (does anybody really sleep in a hospital?), he is doing great.  Paul may not agree but we can see a real difference already.  One of his surgeons came in this morning and was pleasantly suprised when he looked at his incision and checked out his legs and their mobility.  Now we are talking incremental improvement but improvement non the less.  There have been some unoffical tests done unintentionally by yours truly (Suzy), when I have moved his leg or foot too quickly but the result was not a huge spasms.  He was also moved a lot overnight in a not so gentle manner and again, no spasms.  That doesn't mean he won't have them but so far so good.

The pain component is still to be determined.  As we were told before the surgery, the first few days after the surgery would be pretty painful.  Today he is feeling more pain than yesterday but that is to be expected.  Yesterday he had a bunch of meds in him.  Today he has been dialed back a good bit.  But the goal is still to stay ahead of the pain.  The main place he has pain is in the neck and shoulders.  Between the surgery and all of the moving around the day before surgery, he had to support his neck a lot more than normal.  Plus, with the stress of the impending surgery, that would give anybody shoulder pain.  As usual, Paul is very stoic about the pain.  But don't worry - he is not going to be a martyr.  He knows that the right combo of meds and physical therapy are the key to his recovery.  Willy, one of the PTs at NIH is starting the physical therapy today.   They plan to have him up tomorrow.  He has moved from ICU to his regular room (sorry - still no visitors).  His friend Carole is here now too.  She is a nurse and is amazing.  She flew on the red eye from California last night, got in this morning and is on her way to NIH right now.  She will be a big help.  His nurse from Monday (Victory) is with him today too.  She is a treat and takes good care of him. 

We expect Paul will be at NIH for about a week then probably move to rehab.  The rehab is in Rockville near Shady Grove hospital.  The great thing about the rehab facility is that it gives Paul access to an amazing Physiatrist (Physiatrists, or rehabilitation physicians, are nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move - don't mean to talk down to anybody but I had no idea what that was) who previously was too booked to get into see.  Now he will manage Paul's care and be his main doc.  Great news.  The facility is also really excited to get him in there.  Paul's wonderful PT that he sees in Virginia, Valerie, also gave her stamp of approval on the facility and I toured it.  It seems like the perfect place for him. 

So I'm sure there will be bumps in the road but I think things are on the right path.  Thanks for your prayers and good thoughts.

Hi All.  Long day with good results.  Paul went in for surgery at 8:00 a.m. and got out at around 3:30 p.m.  They had him awake almost immediately.  The surgeons were very happy with the results and said it went very well.  They were able to untether all of the spinal cord which is great news and because of the complete untethering the prognosis is very good.  It will take a few days to assess how he is doing with pain and spasticity but tonight he was doing pretty well.  His pain hasn't been higher than a 2 or 3 (on a 10 point scale) and his legs and feet, which in the past have been the source of the most painful spasms, have not had any spasms yet.  True, he is on pain meds and valium to relax him, but still that is progress. 

Tonight he is in ICU and will probably stay there tomorrow.  Its amazing how much better he seemed in just a few hours.  We'll keep you posted...

Crazy day at NIH.  Paul "checked in" and spent the day with just about everyone at NIH.  I think the only person he didn't see was Frances Collins!  He was poked and prodded and is exhausted.  The good news/bad news about NIH is that it is a "one stop shop" (and thank you everyone for paying your taxes).  So he can get his blood work, xrays, MRI's, PT, etc. done in one place.  His last trip of the day was down to get an MRI (at about 7 p.m.).  We saw the surgeon for tomorrow on our way down and as we were going through a set of doors the nurse almost took out the surgeon.  Paul said, "Don't touch his hands."  So, although completely worn out, he still has his sense of humor.

Tomorrow things get started at around 8 a.m. and the surgery is a long one so we probably won't post anything until Tuesday night.  He'll spend tomorrow night in ICU and probably be moved to his room on Wednesday if all goes well.  They will bring him out of anesthesia pretty quickly since the surgeon said that the only way they can assess him is by having him awake and see his response to the movement tests that they give him.  He is likely to be in a tremendous amount of pain for the first few days.  The great news is his friend Carol, who just received her nursing degree, is flying in on Wednesday to lend a hand.  I'm sure Paul will be sick of the rest of us by then (okay - he probably hit that point long ago but humor me) so we all appreciate her being here.  Other than Carol and family, I don't think he'll be up for visitors yet but we'll let you know.  This is going to be a marathon not a sprint.

Paul will be admitted to NIH on Monday and have surgery on Tuesday to "untether" his spinal cord.  The hope is that this will end his constant pain and spasms.  We'll update you after the surgery on Tuesday.  At this point he would prefer not to have visitors.  We'll let you know when that changes and thanks for prayers!