Scott and Marcus website

Friday, July 27 afternoon (T1 +10 months, 22 days)

    We got the results of from the orthopedic doctor.  The news was not good.   Scott definitely has Avascular Necrosis in both hips (also called osteonecrosis).   One suspect cause was the steriods he took for several months after the transplant to prevent rejection.   But the doctor was not convinced that the steriod was the “smoking gun”. 

    Avascular Necrosis is when the veins leading from the bone are not working right so that blood backs up into the bone and fresh blood cannot get in.   The bone then dies.  Over a course of months (average is two months), perhaps longer, the bone disintegrates and becomes weak until eventually the bone “collapses”.  Once that happens, the only treatment is a full hip replacement.   :(   

     The good news is that the bone has not collapsed yet and there is a little bit of hope that the vein will start working again.  Also, there is one thing they can try to prevent the collapse.   They can do something called a core decompression.  Basically they go in and drill a small hole (7mm, not that small) in each hip bone to let the blood flow out of the bone so fresh blood can come in and support what is left of the bone.   Apparently the chances of this helping are only 50/50, at best, and it must be done in the next few weeks to be most successful. 

    The other choice is to just wait for bone to collapse and do a double hip replacement.  

    The other “good” news is, if he must do the full hip replacement, there was a recent improvement in the material used for hip replacement so that the new hip could last his life time.  Not that long ago, life expectancy of a replacement hip (not the patient) was only 10 to 15 years and younger patients often had to go through the whole thing again.  

    What I read up on the internet says keeping weight off the hips will hopefully delay the collapse.   There is no medicine that can help except to treat for pain (yes, it is very painful) but most of them he is not allowed to have.  We are also going to try physical therapy to build up the muscles around his hips (and the rest of his body while we are at it.) 

    We are also going to get a second opinion.  Unfortunately, I don’t think there is a whole lot we can do that will be much different, but to find a doctor who can communicate with Scott better.   It is very difficult for a doctor to communicate with Scott.   I know from experience.   But they cannot just talk to me and expect me to tell him everything.   This visit went a little better than the last visit but it still was not easy.  The doctor would talk, leave (see another paient), let me type up what he said, then come back and see if we had any questions.  

    Interesting thing happened, when I asked if there was anything we could do to make sure this does not get any worse than necessary, the doctor grinned and said “don’t get another transplant”.  He was a bit horrified when I had to explain, Scott is on the list to get another one, and while he does not need it right now, there is no guarentee he won’t need one in the future since this liver is still not 100% (but it is still trying - Ranger livers never stop trying!)

     We are still going to go to Pennsic next weekend - our annual camping vacation where we do Medieval Recreation with many of our friends.   But only for a long weekend and we are going to take it as easy as we can.  Scott is right now trying to fix the brakes on the van in preparation for our trip. 

     I forgot to mention earlier, when Shannon went to Girl Scout camp - she got her SCUBA diving certificate!!!  Of the six girls who signed up to take course - only 3 managed to complete it and get the certificate.  She apparently spent most of the week wet! When they got back from the SCUBA lessons - the girls spent a couple of hours in the pool.   (I think she is part mermaid!)  We are very proud of her and jealous!!!  She apparently really likes to SCUBA dive and wants to go again.   If anyone knows of someplace where I could take her SCUBA diving around here and that she could dive without a parent (neither of us have certificates yet), let us know.  

FYI - the BBC broadcast will be shown in the UK on this Monday (July 30).  You can view it live on streaming video (aka via the internet, not the tv) on “BBC1″.  Check back if you are interested because I don’t know the time or the exact website.   

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Sunday,  July 29, evening (T1+10 months, 24 days)

   We started packing for Pennsic this weekend.  Scott got tired so easily it scared me.    Too make matters worse, Scott is not sleeping well at night.  Then he sleeps during the day.  

    Anyway, if you are interested in watching the BBC program “Fight for Life”, it will  feature Scott and I, but focus on Marcus and Kim.   It will be on BBC1 at 9pm Monday night, British time (4PM here).   If you go to the website http://www.liveuktv.com/stream-live.asp  and sign up for the free 7 day trial you can watch it.  Now if you won’t be home at 4pm, then they also show the same programs on a five hour delay so you can watch it 9pm EDT.   We are going to attempt to tape, wish us luck!   

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Thursday,  August 1, evening (T1+10 months, 28 days)

   Scott updating:  Packing for our shortened trip to Pennsic this weekend is nearly finished.  Without those few days among our friends and that magical site, my recovery would truly take far longer to occur.  I’m a bit depressed right now, so hopefully this trip will snap me out of it.  The pains in my shoulders, hips, and head, along with the rather significant lack of sleep, are really doing a number on me.

I’m also just a bit disappointed by the final product of the BBC show.  We watched it live on Monday, and I was surprised at just how little of the interviews with Martha and I got used.  We worked hard to accomodate the filming, and my recollection is that they had accumulated about 16 hours of filming before we even got to the hospital.  A grand total of maybe 30 seconds got used, in which I basically lay there with my enormous belly all over the table, nodding a few times while Dr Montgomery explains something (no captions on the streaming video, so I don’t even know what he described).  At least they did use several minutes of the pre-surgery interviews with Marcus and his family.  There are three scenes that stick out in my mind, though.  One was on the way into surgery, when Martha and I said our goodbyes; apparently I said something along the lines of “I know I’m supposed to say something significant, but it’s all been said”.  Another was during the surgery, when they showed my empty abdomen after removal of my old liver - I’m far from squeemish, but I had to turn away the first time on that one.  The last was the interview after I returned home.  My eyes were as large and bright as I could possibly imagine.  Seeing how much energy and hope I had at that moment really made me realize how much I’ve been through since then.  Maybe if I can get a freeze-framed picture of that expression to look at every day, it will remind me of all that I have gained (which I’ve temporarily forgotten to focus on).

We recorded the show, but we’re having difficulties getting it to DVD right now.  When we get that worked out, I can make copies on request.

Keep smiling, and I’ll try to do the same,       Scott

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Monday, August 13 , lunch break (T1+11 months and change)

 Scott updating again.  We went to Pennsic this year again, although just for a short time.  I hope that everyone has a place that is as magical for them as Pennsic is for me.  Of course, it’s the people who help make the place so special.  On the drive up I was afraid that, being deaf, I would feel disconnected from the whole experience; like it was happening around me, and I was just a spectator instead of a participant.  I am so glad to say that my friends, and everyone else at Pennsic, made me feel a part of what was happening.  Sure, it took a bit more effort to communicate with me, but these wonderful people took that in stride and made the effort.  It seems strange that I sleep in a house in Columbia almost all year, but think of a 10′ x 10′ plot of ground in Pennsylvania as my home. 

It was both good and bad for my health to be there.  I slept better, itched less, and had less ringing in my ears than in the past several months.  Unfortunately, my hips took a beating.  The uneven ground, and a considerable amount of walking, caused pain that I could feel getting worse each day.  I really loved our time there, but I couldn’t have stayed any longer.

Which brings me to the health update:  blood test numbers all look about right, though not all quite to the ‘normal’ range.  We went to see another orthopedic doctor on Friday last week for a second opinion on the osteonecrosis and the treatment.  He clearly agreed with the diagnosis, but his opinion was harder to read on the treatment.  He seemed to be saying that it was unlikely that the core decompression would fix the problem, but it would offer temorary relief at least.  He talked about crutches and other ways to get the weight off of my hips.  He also wants new x-rays of my hips (to see if there has been any further damage in the past 4-6 weeks), and x-rays and MRI on my shoulders to see whether they might be suffering from this as well.  My shoulders hurt so much that it would be good to find out what’s wrong, but I may not like the answer.  Anyway, the core decompression on my right hip is scheduled for September 6, so we’ll see how that goes.  I also started physical therapy last week, with an evaluation and exercise in a heated therapy pool in Columbia.  At this point, it seems like my balance will benefit most from the therapy.

And last night I finished reading Harry Potter ‘Book 7′.  I liked it, but thought that there were too many scenes where Harry is hopelessly trapped, sure to die, and through some accident or pure luck manages to escape.  I thought that was overdone, until I realized that I’ve just had a whole year like that.

We’ll try to do updates more frequently, but remember that bad news gets here faster than good news, so a long delay isn’t necessarily a bad thing.  Keep smiling, and I’ll try to do the same.

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Thursday, Aug 23 2007, evening (T1 +11 months +18 days)

 Scary thought of the day.  My kids go back to school next week!!  Shannon will be a freshman in high school (ackkkk!!!), and Erin will be entering 5th grade.   Our days of coming home and goofing off are almost over.  I will have to be bugging kids to work on homework (I swear - getting them to do the homework is harder than just DOING the homework.  Certainly more stressful.)

     We went to my father-in-law’s cabin on the Susqehanna River over the past weekend.  We took my mom and met Mary (the “evil twin”) and two of my nephews there.   It was wonderful and a little strange since the water was warmer than the air!  Scott wanted to go skiing so badly, but he was good and did not.  (It was actually recommended that he not even go into the river yet since it not very clean.)   But he did try to teach my nephew how to slalom (water ski on one ski) for a boy scout merit badge.  (Scott became an Eagle Scout when he was in high school.  FYI- one of the first things he said to me after Shannon was born: “Tell me about Girl Scouts”).  Anyway my nephews and the girls did some “tubing” (being pulled in a large inflatable tube behind a boat - with a twisted driver that is twisting and turning the boat to try and dump the riders out of the tube).   One of the families that also has a cabin there is Scott’s best friend from his childhood, and they were in scouts together.   They grew up together - now our kids are growing up together.  He married a wonderful woman, and they have 3 kids close in age to our kids. 

       I tried to “fix” the anchor for the dock.  The anchor is an old tire filled with cement that has a ring which a chain or a rope can be hooked to and tied to the dock to keep it stable.   It had shifted and need a new rope tied to it so it could be repositioned.  It was about 12 to 15 feet down, I found the tire - but could not find the ring!   Then I when I pulled on the old chain/rope to find the ring, they came off in my hand.  Since the ring did not come up too, we thought it might still be on the anchor.   After about half dozen trips down to the bottom, I had to give up - mostly because I had sliced and punctured my hand on an old rusty cable on the bottom of a VERY dirty river.   (Cea - you think the lake at Pennsic is bad? - this river might be even worse for visibility, but a least no leeches).  I don’t bother with a mask because it does not help with visiblity (zero times two is still zero).  But thanks to anti-bacterial cream and soaking in warm soapy water, the hand did not get infected.   But I enjoyed the challenge of trying get the rope through the ring at the bottom of a dark river.   I just wish I had been successful. 

    Scott’s hips  are hurting a little more each week.  But he is doing a little better otherwise.  He is taking sleeping medication (Ambien) and sleeping better.  As a result, the pain in his hips is better.  He is drinking more water, so the itching is a little better.  This weekend he felt very bad, the itching was driving him crazy and his stomach was “not happy”.  

   Tomorrow we go for a pre-operation appointment to decide if he is going to have a core decompression on September 6.   That is where they drill a hole into the ball of his hip joint to relieve the blood pressure in there.   One doctor said it MAY help prevent his hips from deteriorating as badly (less than 50%).  The other doctor said it won’t change the course of the deterioration, but might help with pain in the long run.  For the most part, it may have progressed too far already to be much use. 

    The good news is that they did an MRI in his shoulders and he apparently does not avascular necrosis in his shoulders.  But they do hurt, probably lack of sleep,  mild arthritis, using his arms more than usual, etc are all factors.   

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Friday, Aug 24 afternoon (T1+11 months, 19 days)

      We talked to the orthopedic surgeon today and we decided Scott will have the core decompression surgery.  The difference is, in order to prevent having to put Scott under anethesia more than once, they are going to do both hips at the same time, and then admit him for one night of observation.   This is tentatively scheduled for September 6 - one year and one day, since the transplant. 

      The surgeon is nervous about doing this surgery since Scotthas had a long history of unusual complications, but it is the only hope to possibly lessen the chances of needing two full hip replacements someday and help relieve some of the pain now.  The pain continues to get just a little bit worse each day.   So on September 6 (or whenever the surgery needs to be) please cross your fingers, pray, or whatever you do, that this helps.  

    Scott will need to keep as much weight as possible off his hips for 6 weeks after the surgery to try to prevent possible fractures, which will be hard since both hips will be involved.

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Tuesday, Sept 4 afternoon (T+364 days)

      Scott updating:  Well, I nearly finished out my year of unexpected complications and illness by adding one more at the last minute.  On Saturday we thought maybe I had taken out the vision in my left eye, but it turns out that I probably got lucky this time.  We finally had two trees taken down, which had been leaning toward the house and had really bad root rotting issues.  That inspired us to do some yard work to clean up the backyard.  Now, I value my eyesight, and always wear safety glasses when working with power tools in my shop.  But to wear them doing yard work?  You’d look about as out-of-place as the guy in the Pace picante sauce ads, who gets his salsa from Ney York City.  Besides, we all know that those warning stickers appear on nearly everything you pick up, and they’re only put there by overprotective lawyers (or else the Nerds lobbyists, trying to make the nerds blend in).

So I get out the extension cord, drag it all over the backyard to where we’re working and plug in the string trimmer (the gas powered trimmer wouldn’t start, and I was in no mood to mess with it).  Not even sixty seconds into doing what felt like the first really productive work I’ve done in months, I hit a stone which flies right into my left eyeball.  Martha said it was bleeding, but couldn’t quite explain to my deaf ears where or how bad.  When I looked into the mirror I could see that my eyeball itself was bleeding on the inside, just to the left of my pupil (kind of like a bruise or a blood-blister).  These days when I get hurt I try to think like a doctor: what would they want to help diagnose the problem?  I thought: time lapse photos for the first couple hours would be helpful.  So we took some good digital pictures of it for a start.  Martha somehow got in touch with an eye doctor on Labor Day weekend, and he gave her some things to look for: spots in my vision, tunnelling, sudden loss of sight, naked goats frolicing in the sun (OK, that would mean an entirely different illness).  I didn’t have any of those, so I relaxed but kept taking pictures from time to time.  The spot has enlarged, but my vision has gotten clearer, so it looks like I ‘dodged a bullet’ this time, and the “bruise” is breaking up and healing.

We finished up the yard work, and capped it off with designing and constructing a short 12′ section of fence to close off the girls’ “hidden fort” within the bushes.  No more injuries, but I sure was sore after all that walking, standing, and bending over.  For the past two weeks I was getting really depressed, and not very hopeful for my capabilities in the future.  Working together with everybody, and accomplishing the fence-building really helped.  I’m still not all the way back to cheery, but I am feeling much better.  (watching Wild Hogs on DVD the other night really helped, too - very funny)

Well, keep smiling, and I really will try to do the same.  After all, tomorrow’s my other birthday!

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Wednesday, Sept 5 2007, evening (T1+ 1 YEAR exactly!!)

      Happy Birthday liver!  There were times we did not think it would make it this far, but your prayers, good wishes, etc must have helped because he has made it this far!  One year ago, I was in a waiting room, Marcus was out of surgery and starting to recover, and they were saying “everything looks good” about Scott.  

     Marcus, again, thank you for such a wonderful gift.   I hope all is well in your family and you can enjoy life to the fullest!  Are you playing hockey yet? 

   As Scott said, we got outside this weekend (the weather was wonderful!) and did  some much needed yard work, mostly pulling weeds out.   Unfortuantely - there was one causualty - me.  I am suffering from Poison Ivy.  I thought I had managed to avoid it - but this morning I realized “those aren’t bug bites - that’s poison ivy”. I am sure stress is not helping it either.   Fortuantely as poison ivy goes, it is not to bad.  I am no where near as allergic as some folks. 

   Tomorrow is the surgery.   The bone decompression, where they drill a hole into the ball of his hip.  They are going to do both hips so he only has to under anesthesia once.  

     It is fairly minor as surgery goes, but everyone is worried because it is Scott involved.   Me too.   Usually this is an outpatient proceedure, but since they are doing both hips (so he won’t have a good leg to stand on) and it is Scott they are going to admit him and put him in ICU for “observation” tomorrow night.  That did not make me feel any better.      If all goes well, he will hobble home on Friday.  He will apparently need to be on crutches for six weeks.  But it could be six months before we find out if it helped or not. 

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Thursday, Sept 6 2007, evening (T1 + 1 year, 1 day)

  The surgery apparently went well.  So well, they decided not send him to ICU but rather just a regular room.  Unfortuantly, the nurse he had this afternoon did seem to want to talk to him since he was deaf.  We rarely saw her.   And the painkiller they gave him was not strong enough and he was in a lot of pain. :(   They promised he would get a bigger dose this evening.  So he is probably asleep. 

    The plan is still that he will come home tomorrow, and he will be allowed to put 50% of his weight on his hips, and rest on either crutches or walkers.   So this weekend will be “fun” as he learns to get around, and not trip on the stuff we all tend leave laying around.    

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Thursday, Sept 13, morning.

Quick update before I leave for work.  I thought Scott was going to update you, but he forgot.  Yes, he is home with no complications.  He has to use a walker to get around, not because he cannot walk, but because he is at risk of a bone fracture if he puts too much weight on his hips.  He cannot drive yet.   So I am having to drive him to physical therapy.  

  I hope all is well with you.  Either I or Scott will update you with more details soon. 

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Saturday, Sept 15, late night (T1 + 1 year, 10 days)

Scott here:  OK, more details.  I came home last Friday afternoon, on schedule, after some in-hospital physical therapy (PT) to show me how to get around (and how NOT to).  As Martha said, I’m either using the walker or crutches for every step I take, and not cheating (really, I’m not cheating).  I’ve been to PT at the local therapy center/ health club three times so far, and accumulated the equipment I need to do my homework exercises. 

It is incredibly difficult to remember to use the walker, and not put much weight on my hips, because I feel better every day.  This is the time when I’m most vulnerable, though, so I stay on track.  I’m allowed to stand on both legs (half weight on each), but not walk without the extra support.  Most days now I feel better than before the procedure.  My shoulders are really taking a beating, though.  My preferred mode of transport is just to stay in an office chair, and slide around from room to room.  I can get almost anywhere on the first floor that way, but the living room is carpeted, and that slows me down. 

Going up or down stairs is less than fun.  I can only use one crutch at a time (plus the railing, so I don’t fall over), but I need both crutches when I get where I’m going.  So it’s climb two steps, move the spare crutch, climb two steps, move the crutch…  But at least I can get upstairs to take a shower when I want to.  The doctor says I’m basically ‘water resistant’ - good enough for a shower, but not yet a bath.  When I’m water-proof, I get to resume PT in the warm therapy pool, which was really great for stretching and improving my balance.  We’ll go to see the orthopedic doctor on Tuesday, and I’m hoping that he will let me at least drive again.  I really hate having to mess up Martha’s schedule every time I need to go somewhere.  So instead, I just stay home except for PT.  It’s getting old.

 In the meantime, I’m keeping busy.  I worked full time all last week (except for the holiday and PT time), and thanks to a new second monitor I can be much more productive at work.  Earlier today I got inspired and tackled some big blue tubs that had become catch-alls when we renovated the sick-room over a year ago.  Four tubs got reduced to about one and a half, and I hope to get it down to one smaller tub soon.  Then maybe I tackle thre garage…  It’s something that I can do sitting down, so at least I can feel productive while I recuperate.

Shannon went to the Renaissance Festival today to work for a friend at Dancing Pig Pottery.  Apparently she barely recognized Glenn, who she has known almost since birth (they’re about the same age), because he is now about my height with a deep voice.  Thank goodness she’s not interested in boys yet, because she now fills out her favorite RenFaire dress like a full-grown woman, and I’m sure she turned a few dozen heads.  Goodness, I survived the fatal liver disease and the dead hip bones, but worrying about her when she looks like that might just kill me.

Well, keep smiling, and I’ll do the same.

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Monday, Sept 24, lunch break (T1 + 1 year, 19 days)

Scott here:  Sorry it’s taken a while to update the site - now that I’m mobile, I have things to do!  We went to see the orthodoc last Tuesday, and he not only told me I can drive, but he removed the stitches, and said I would be “waterproof” in a couple days.  He also said that from the way things looked during the procedure, and the progress since then, “If this is going to work for anybody, it should work for you”.  To me that means that if I follow directions and don’t mess this up, I may not need hip replacement (at least not for a long time).  He feels pretty confident that I’ll be able to waterski next year, and offered to pull me behind his boat.  I have my first post-procedure therapy pool session tomorrow, which should be enjoyable; the warm water really helps to loosen up those joints and muscles.

Martha spent every spare moment last week digitizing all the photos I had from my years in Scouting, and assembling them into a large photo album.  I think we had something like 40 pages total.  I think she got a bit frustrated waiting for me to fill in all the captions.  We took the album along to my troop’s 75th Anniversary celebration on Sunday.  Most of the formal program went right past me, but looked like it was well done.  Sitting around talking afterward was the best part for me (partly because I’m better at speechreading when I’m in a one-on-one setting for a few minutes).  I do wish that more guys from the olds days had been able to make it, but most are spread all across the country now.  Stan Bennett sent an email with a bunch of great old stories that inspired other stories, and we just wanted to keep going.

Well, Mark, lunch is over, so I’d better get back to work.  Keep smiling, and I’ll do the same.

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Tuesday, Sept 25, wee hours (T1 + 1 year, 20 days)

Scott here:  What a difference an afternoon makes!  First off, let me say that I’m alright, and not in the hospital.  BUT, within four hours of completing the previous update, I was on my way to Howard County General - in an ambulance, no less.  On my way home traffic came to a sudden stop, and the guy in front of me stopped, I stopped, and I wish I could say as much for the guy behind me.  My Subaru became the meat in a 3-car sandwich.  All I was really sure of when the paramedics got there was that I was bleeding from my forehead, and my neck had gotten jarred around some.

They put a neck brace on me, bandaged my head quickly, and strapped me down to a back board.  I was able to get them to take me to Howard County since we were right on the county line and we live in the same town.  After about two hours on the back board (seemed like two days), they rolled me off of it just before Martha got there.  Erin was with her, and just a bit scared until she found ways to be helpful.  Martha’s brother Paul came over and got Erin about he time I went for x-rays and a CT scan (Hopkins does these better IMHO).  Anyway, they decided my neck and head were OK, got me out of the neck brace, and started an IV to replenish some fluids.  The doctor closed up the wounds with superglue, of all things, and when the fluids were in we got dismissed (around 1AM).  I ended up with A big lump, three cuts, and a NASTY headache.  I look pretty gruesome at the moment.

Tomorrow we’ll go see the Subaru and get all my stuff out of it.  If it looks anything like my head feels, it’s not going anywhere again.  We’ll see, though.  I just recall seeing a crumpled hood in front of me, and a trail of car parts behind me, as I was waiting for the ambulance.  I was surprised by two things: the air bag never deployed, and the fuel pump never cutoff.  We may have gotten hit lighter than I thought, but I remember turning off the engine myself; I had often heard that it shouldn’t take much to trigger the cutoff switch.

Please smile for me - I’ll try to smile by Wednesday sometime.

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Tuesday, 25 Sept - afternoon

     Someone must have said “it can’t get much worse” and someone else has decided to show them it can.  Scott’s black eye is getting much more swollen and ugly looking.  It almost does not open at all without extra effort. 

  We manged to get to the Suburu (they towed more than 45 minutes in the OPPOSITE direction from our house.  - it took us an hour to get there and an hour back).  We got everything out of it including Scott’s work computer and the walker and wheelchair.   The only thing that we could not find, was his keys (they only had the one to the car).  I am hoping the Officer at the scene has them, but he is off duty until Saturday.  

    My CR-V needs a new clutch (anyone know where Scott put that phone number to the repair place?), the Suburu is out of commision - possibly permanently - and today the battery in the van decided to go.   We went from three cars down to ZERO.  So on top of everything else, we had to go get a jump start so we could go get a new battery for the van (so we would have one vehicle that works) - and Scott went to his previously scheduled threapy appointment.  (the idea was to keep his muscles limber so they don’t stiff’en up).  But he was VERY tired and sore when we got home.  

BTW - I put some pictures of Scott and the Suburu in the page marked “Various Photos”.

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Wednesday, 26 Sept - noon

     Scott updating:  My headache seems to be calming down a bit, though both eyes are continuing to swell and blacken.  My left eye is swollen mostly closed, with just a slit to see past my eyelashes, and my right eye has begun to swell at the inside corner.  I seriously hope that the swelling stops while I can still see, because it would be no fun at all to be Helen Keller, even for a day or two.  It’s a bit of a scary thought to be locked in my head with none of my traditional inputs.

I’ve figured out the answers to the car safety questions.  I’m not happy with the answers, but I do think they’re correct.  I’ll try to keep the explanations brief and not too technical, but I’ll uderstand if you want to just skip the rest of this update.  The reason the fuel cutoff switch didn’t activate is easy - Subaru doens’t have one.  Apparently only Ford uses this system, but most of my car repair experience is with Fords, so I thought it was universal.  The airbag explanation is a bit more involved.

During the accident, I remember feeling three distinct hits.  This makes sense if you think about it, because of the gap between me and the car in front of me.  The first hit pushed my car forward (pushing my head BACK into the headrest), the second was my car hitting the car in front (pushing my head FORWARD into the steering wheel), and the third hit was the car behind me shortening the Subaru by a foot or so (again pushing my head BACK).  So the cuts and bruises had to be from the second hit.  Airbag sensors are made to trigger based on a number of conditions involving the way that a car loses energy rapidly.  Generally they trigger at about 8 to 14 MPH deceleration, if they sense that the overall deceleration is going to be much larger.  They aren’t designed to trigger in a simple rear-end collision at all, since you’re thrown backward and the headrest takes care of you.  The first hit was actually an ACCeleration from the car’s perspective.  The second hit was a deceleration (perhaps by as much as 10 MPH), but the sensor correctly detected that it was a short term, relatively low energy event, and did not trigger.  In fact, airbags are intentionally designed not to trigger under these circumstances, not only because they are expensive and tedious to replace, but because the explosive release of energy can actually do more damage to your neck by rapidly thrusting it backward.  As it happens, the third hit did just that, anyway, probably more gently.

So the airbag wasn’t supposed to trigger in this case, and there is no fuel cutoff switch.  If I might get on a soapbox for a moment, though, why shouldn’t all cars have fuel cutoff switches that trigger whenever there’s engine compartment damage?  The thought of an electric fuel pump supplying a steady stream of gasoline onto a hot engine is truly terrifying to the occupant, and may account for some of Hollywood’s fascination with car fires immediately after most accidents.  And hopefully future generations of airbags can be made to safely deploy in the type of accident I suffered - or how about some padding or a shock absorber of some sort on the steering wheel?  It seems to me that the innocent victim of a “sandwich” collision deserves as much protection as the driver (innocent or not) in a head-on collision.  Certainly “sandwich” collisions are not at all rare.  I think about these things more as the swelling increases.

Well, keep smiling - it still hurts for me to smile, but I’m trying.

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Thursday, 27 Sept - noon

     Scott updating:  The pain and swelling seem to have maxed out yesterday, and both are down a bit today.  I now have complete black eyes around both eyes, but the swelling around my left eye has gone down enough to see relatively normally.  That’s a relief - this time yesterday it was still getting worse on both sides.  I posted a new picture this morning.  Whether it was different lighting or I made a mistake while uploading for the first time, I seem to have gotten old overnight, and now have lots of gray hair.  You’ll have to take my word for it that I don’t look that way in the mirror.  I have to agree with Mary’s observation, though, about the cuts forming the letter pi.

I have decided to go ahead and take today and tomorrow off, so that I can be my best by Monday.  Thanks to some kind co-workers’ donations, I am able to have that option.  So it seems like this excitement is mostly over, but for the healing and probably car replacement.

 Keep smiling, and I’ll try to do the same.    (is that better?)

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Wednesday, Oct 3 - evening

     Scott updating:  I’m back to working full time, thus far from home.  Tomorrow I have a meeting to attend, so I’ll go back to a ‘normal’ day for once (hopefully).  With a little luck I won’t scare the coworkers too much.  I’m still quite colorful  from the eyes on down.  The lump on my forehead seems to have swollen slightly the past two days, and it has become more painful.  We’re keeping an eye on it for now (my left eye, I believe), and if it gets any worse we’ll go to see the doctor about it.

We heard from our insurance company that they believe the Subaru is fixable, so that removes the stress of car shopping.  We’ve chosen a body shop very near to our house that does very good work, and we’ll see if they agree or the fixability.  I don’t want to end up with a nice car that has deep hidden damage - resale value is already shot just by being in an accident, but I never sell them less than twelve years old anyway.  Shopping for cars is a little exciting, but I always feel like I need to get the most absolutely perfect car, which is stressful.  Looks like I may not need to, yet.

So, keep smiling, and I’ll do the same.

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Tuesday, 9 Oct 2007  (t1+1 yr 1 month 4 days or T1+ 399 days)

     Martha here.   Weather report first.   For those of you not in Maryland, the weather here is very unusual.  Although it is fall here - you would not know it.   The weather thinks it is still summer.   Normal average high is about 70 degress, but yesterday it hit 90!!  Plus we have been suffering a pretty nasty drought.  We are way below normal rainfall for the year.   Everyone’s grass is very brown - and you can’t blame the cold!   But tonight a front comes through and not only is it supposed to get cooler, but there is a chance of some much needed rain.   It is very strange to be still running the air conditioner in October! 

     Scott is slowly starting to look better.  For a while there we thought he was getting worse due to his low platelet counts.   But over the weekend he started doing better again.   Potentially good news on the car as well.  It may be repairable.   The body shop is going to try to fix it. 

    But the strange thing is - no police report yet.  So, although we know it was not Scott’s fault - that is not official yet.   And since the officer never took Scott’s statement I hope the report is in Scott’s favor. 

     It is a little over a month since his hip surgery.   He is allowed to walk a little bit now.  (example 10 feet or less).   But he woke up on Monday and his left hip hurt.  We don’t know if he slept on it funny, the avascular necrosis is coming back, or he damaged his hip bone. 

    Our life has been the usual busy.  Erin is learning to play the trumpet.  We have also been doing Girl Scouts (anyone want girl scout cookies?), homework, Physical Therapy, homework, our work, homework, getting Shannon to and from the Ren Fair, homework Erin has been enjoying the warm weather by playing out doors with neighbors, the usual errands,  - and did I mention that the girls (especially Shannon) have had homework? 

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Friday, 19 Oct 2007  (t1+1 yr 1 month 14 days or T1+ 409 days)

     Scott updating:  A brief, but overdue update.  My face is back to normal colors, but still as ugly as before (plus three small scars).  It still hurts a little from time to time, but nothing I can’t deal with.  The car, on the other hand, isn’t healing as quickly.  Apparently the body shop says that it can and should be repaired, but it will cost about $3K more than the insurance estimate.  Since the total estimate is now coming in close to 75% of the value, the insurance company might ‘total’ the car.  I’m not quite certain how that works, but I’m hoping to then buy the car back and have the repairs done anyway.  For a long time I wasn’t comfortable with such a nice (”foofy”, Bill would call it) car, but it had finally grown on me and felt like “my” car.  I may lose a little money in the process, but probably less than if I started over with another car.  Apparently there is a police report now, though I don’t have a copy yet.  I doubt that it actually says much, since I recently found out that apparently there wasn’t a statement from either of the two main drivers involved.  Apparently the other driver was hurt pretty badly, and was in the hospital until a week ago.  I wish him well, as I’m sure this has all gone at least as badly for him.

I saw my liver doctor today, and he discontinued almost half of the medications I have been taking.  I am also supposed to cut out dairy products, and apparently I have a huge hernia across my adbomen, which he does not recommend that we fix (at least at this time).  At least I think that’s what he said, since Martha got all the first-hand information, and passed it along to me.  We’re gonna cut out the meds first for two weeks, then tackle the dairy if necessary.  Sue me, but I like a bowl of cereal from time to time.  my abdomen looks funny when I stand up - a big bulge just below my ribs, then skinny at my waist.  There’s no fat or ascites, just this huge mass of organs sticking out.  When I lie down, it all goes flat.  Weird, like me.

Martha has been getting back into scrapbooking, and we finally have a computer with enough memory to handle the all-digital arrangements that she is getting into now.  We’re going to the Renaissance Festival tomorrow, especially to see the Medieval Baebes play.  I can’t hear them, but I can take pictures and I want to thank them for the get-well message they sent me last year in the hospital.  I haven’t been to the RennFaire in at least two years, so it will also be a chance to say hi to some old friends.  And after all, who needs to hear Johnny Fox’s routine, since he hasn’t changed it in at least ten years, and I memorized it long ago…   Erin is camping this weekend with the Girl Scouts, so she’ll miss the faire this weekend (she went a couple weeks ago).             Oh, and Shannon still has homework to do.  She switched classes at mid-term, and has some catching up to do, as well as some close-out work from a couple of the old classes.  She really is concentrating on trudging through it all, though, and might be able to see the sunlight again by Monday morning.

Congratulations Richard - All Hail King Fuzzy Tail!!!

So much for being brief.  I’ll bet you thought I would run on forever like usual, didn’t you?  You were right. 

Keep smiling, and I’ll do the same.  Scott

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Sunday, 4 Nov 2007  (t1+1 yr 2 months or T1+ 425 days)

     Scott updating:  This update is overdue, but we’ve been keeping busy.  We heard more about resolving the accident.  I got a copy of the police report, and finally found out what kind of car hit me (Pontiac G6, if it makes any difference).  Until now, all I knew was that it filled my rearview mirror, and that it was moving too fast to stop in time.  Apparently the police officer agreed with that much, since the report put the other driver completely at fault and his insurance company agreed with that.  With that admission, we can recoup our deductibles and a pain and suffering claim.  My insurance company has decided to pay for all the repairs on my car (minus the deductible), so I won’t lose any money on that after all (I never get rid of cars until they have almost no resale value, anyway).

 As I expected, when we stopped the diuretics I started to accumulate some ascites.  I need to go back to really watching my salt intake closely for a while, then later I can back off a little bit.  My hips have been hurting some as I near the last stage of recovery.  I haven’t used a walker or wheel chair in weeks, and even small cleanup tasks around the house really damage the muscles around my hips.  I’m still going to physical therapy twice per week, and that helps some, but rest and a more consistent work level are what is really needed.  PT does help me to understand what’s going on with the muscles themselves, and for an engineer that’s really important.  I’m also trying to go easy on the dairy.  While not cutting it out completely, I do find that when I remember to take Lactaid with it, that helps alot.

Shannon finally made it out from under the homework pile, though her regular homework load is still considerable.  Erin recently ran up against a deadline on a long-term assignment, and hopefully learned a lesson about needing to plan better.  I hope she learns this more quickly than her sister.  She’s playing trumpet in the school band this year, and apparently Martha and Shannon wish for temporary deafness during nightly practice times.  Martha and I saw a demonstration the other day for a Captel telephone, that looks promising.  It works much like a regular telephone in that my voice goes out, but then an operator repeats the other party’s words into a voice-recognition computer which puts text on my phone almost real-time.  It’s like television closed-captioning for the phone.  It looks like I can get one for free at work, and they are on sale right now for a home unit.  So don’t be too surprised if I manage to call you sometime to chat.

We did make it to the Renfaire to see the Medieval Baebes’ concert.  I managed to take about 130 pictures, some of which turned out pretty acceptable despite the long distance from the stage.  Because of their popularity, the closest I could get was still about 30 yards away.  I also got a few goot shots of Johnny Fox and other Renfaire sights.  Overall the pictures were good enough that I’m once again thinking about stepping up to a better camera.  Can’t justify that cost right now, though.

That’s about all for now.  Keep smiling, and I’ll do the same, Scott.

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Monday, November 12, (T1 + 1 yr, 2 months)

      Martha here.   Today is a holiday for the adults but not he kids.  We are honoring our veterns today.  As some of you know, my father is a vetern of the Vietnam war - and he passed away just over 5 years ago, this week.  In the past year, when things looked very dark, I think he was there with me offering me comfort.  Especially when the issue was a car problem on top of everything else  :)    (In case you did not have the priviledge of knowing Bill, he grew up a farmer working on tractors, joined the Air Force and became a fighter pilot and went to college and got his bachelors and masters in engineering, retireed after 26 years and started a second career as an engineer, retired from that, and started a third career doing his true love - being a car mechanic out of the garage.   I miss him a lot and so do my cars.  Today Scott, my mother, and I are going to go to Arlington National Cemetary where he is buried to honor him and visit the various memorials in Arlington and nearby. 

     Scott and I have undertaken one of our most hated jobs - studing the various health care plans we have available to us as federal employees in order to pick the best one for us.  I believe the one we have has now priced themselves out of our market.  Not the part we pay through work, but all the co-pays are going to be half again as much to tripled.   That and the fact they kept trying to tell the hospitals they would not pay for visit (never did that to us - just the hospitals) for some reason (example, they would not pay for one visit because they did not consider it medically necessary).   Because a second transplant, Cochlear Implant(s) for his ears, and hip replacements are all still possiblities, not to mention a wide variety of medications, etc, we need a good plan for us.  (If you are a federal employee, we are open to suggestions and recommendations!)

   Scott’s health.   In general he is doing pretty good.  He is working almost full time (the biggest problem is appointments, not  illness or fatigue) and is getting around unaided.  He is getting stuff done around the house which always helps his self-esteem.  However, I think I am being paranoid that his color is getting worse.  I think he looks more greyish and yellow than ever. (Of course, everyone else says “he looks great!” so maybe I am just seeing things.) He is also retaining a lot of fluid since he was taken off his diuretics.  His abdomen is very distended (causing his hernia to be worse) and fluid is building up in his ankles and feet and causing pain when walks - especially when he is tired. I think he may have to go see a foot doctor to suggest proper shoes and other suggestions for when his feet are retaining fluid.     Scott had blood work done last week, but we do not have the results yet nor have we been able to schedule the MRI he has supposed to have. 

  We were able to go to one of our Celtic events over the weekend and see many friends.  Fortuantely it was converted from a camping weekend at the beach to a long evening in a warm (heated!) house due to weather.   Erin was able to go to a sleepover with her best friend who has moved to Alexandria.   Shannon just enjoyed not having any homework to do!   I worked - and mostly finished , a digital scrapbook that I printed out and took with me for our friends to see. Didn’t have to get out all the stuff and make the mess I usually do when working on actual album.   I love the software I am using!!    We also had two small catastrophes.   The garbage disposal fell apart and I broke the emergency brake in the van.  As Scott was pulling out the old emergency brake to replace it - he found all the other things in the van that need to be fixed in the very near future.   Sigh. 

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Tuesday, November 13 (T1 +1 year, 2 months )

    I hate it when I am right.  We got the blood test results back.  Scott’s bilirubin is very high again.  The doctors are trying to arrange for him to  get an MRI as soon as possible.   Then we go from there.  

    I feel like we have accidently gotten in line for another roller coaster ride - that is not working right and I already have a tummy ache.   We are trying to get out of line, but so far we have not found an exit…

   We will let you know when we know more

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Friday, November 16, evening (T1 + 1year 2 months)

    Scott got blood work done again yesterday.  The doctors got the results and his bilirubin number is about 50% higher than it was last week - and last week had the doctors nervous.   So as a precausion and so they can do tests to figure out what is going on, he is being admitted tonight.  Other than , we know he will have an MRI, we don’t know what other tests they will do or what the suspect maybe going on.  We will let you know when we know more.

    The bad news is - we had a busy week planned next week.  There was to be a small conference at NASA next week dealing with the stuff Scott works on - and Scott was suppose to be running it!!  It was doing wonderful things for his ego to be feeling very productive and useful.   Maybe he can still make it???

    We were also going to go to Pittsburgh and have Thanksgiving with “The Evil Sister” and her family.   My mom, Scott and I were going to be staying in a nice resort nearby while Shannon and Erin stayed at the house with all the rabbits, guinea pigs, snakes, etc - oh yeah, and cousins too!  We have such good timing….

    Will update when we know more.  

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Saturday, Nov 17 afternoon,  (T1 + 1  year, 2 month)

   Scott is here at Hopkins.  Luck has been with and we managed to get a nice big room, so I spent the night here.  He had an ultrasound very late last night (neither of us got much sleep) and he finally got his MRI just a little while ago.  The ultrasound did not show anything unexpected.  We are waiting to see if MRI shows anything.  Good chance he will have a biopsy within the next 24 hours. 

      Both Scott and I have our laptops - and there is internet here in the rooms now!!   Scott has been working to put notes with his slides so if can’t make it to his conference, someone else can do his presentation.  Maybe he can even attend the conference via the internet ???  That put him in a much better mood since he can work on his slides, check emails, etc. 

   I can update this website from the room!! I am becoming more computer savy.  I took a picture of Scott working on his computer using my camera phone, transferred it to my computer, and uploaded it onto this website.    It is on the main page.   I am having fun (better than sitting around worrying about something I can do nothing about.)

   The medical staff remember Scott - but they remember him with no hair and still hearing.   They are all surprised he has gone completely deaf since he was here on this floor.   But they think he looks much better (except for the yellow).

    I want to send a special thank you to my mom who is watching my kids this weekend so I can stay here with Scott and be his “ears”. 

    Since I can, I will be back on soon and let you know more when I know more.

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