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!