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March 15, 2000

Hello friends,

For some time now, about two years, Sharon has been suffering from the late onset of rotational scoliosis.  This is a rotation of the lower to mid spinal column and degeneration of some of the vertebrae.  It has taken all of this time to find a specialist as the HMO is very slow with referrals.  We have finally scheduled surgery for the first week in April.  This will include fusion of the discs as well as the installation of hardware "rods".  We are more than grateful that this will be performed at the Stanford University Hospital, as it ranks with the best in the world.   Meanwhile, Sharon  has been trying to work while suffering a great amount of pain as well as numbness over an increasing area. The prognosis is good, as we understand it, and hope that she will be back to a limited work schedule by mid May.  I will continue to update the website, but due to my full time job at Stanford and taking care of Sharon during her recovery, I will not be able to fill any orders.   Hopefully, I will revise all of the material on the web site by the time of Sharon's recovery.



April 4, 2000  8:00 PM


I delivered Sharon to Stanford yesterday morning at 6:30 AM and she was taken to the OR at 8:30 AM.  The surgery, which was originally estimated to take five hours was increased to an estimated ten hours due to additional problems that were found.  This also required anterior as well as posterior surgery.  I was shocked, after five hours to find out that they then estimated another seven hours.  At 9:30 PM they wheeled her to the ICU and I was able to see her briefly at about 11:00 PM.  I met with the surgeon immediately after and he informed me that all had gone as planned, only better.   The 50% correction, which they expected, was closer to 100% !  More than we could have hoped for.  His last comment was "the rest is up to her". 

I visited her today at 2:00 PM.... she's still sedated and stable in the ICU.  At 6:00 PM there is little change, but she is now breathing partially by herself.  They informed me that she is stable and that they hope to remove the intubation by tomorrow.  If all goes well, she will leave the ICU tomorrow.  I'm soooo tired....got to hit the sack.

April 8, 2000  7:30 PM

It's been a frightful week, to say the least.  Sharon is still in the ICU and is in stable condition.   Each day they tell me that she will probably be extubated the next day.  Last night was the first that she was able to breath on her own and they are hoping that she can be extubated by tomorrow (Sunday).  She was semiconscious today when I visited and seemed to recognize me, but had not remembered any of my other visits.  For someone who never sleeps over five hours, Sharon is going to be very surprised to find out that she was out for five days!


April 10, 2000 8:30 PM

Breakthrough!  Sharon was extubated today and she has been breathing by herself since 2:00 PM.  We aren't out of the woods yet, as she has to make it through the night on her own.  Also, she was having problems with her breathing exercises due to weakness.  She hasn't had any nourishment for eight days.  They started her on small pieces of ice and hope that she can progress to some liquid food by tonight. I pray that tomorrow night I will be writing about her further progress.  We ask for your prayers and good thoughts.


April 11, 2000 8:00 PM


Sharon was released from the ICU today and moved to the recovery unit.  She was able to eat a small amount of soft food this morning and will progress to more solid food over the next couple of days.  I saw her back today and aside from a two foot long incision, it looked straight.  She's going to work hard to rehabilitate over the next months.  I hope that tomorrow brings as much improvement as the last two days.  More later...


April 14, 2000  9:50 PM

Two steps forward, one step back.  Sharon has been running cyclic fevers since she was in the ICU.  The doctors thought that it was an artifact of the trauma from the surgery, but today we learned that it is being caused by an bacterial infection.  It's too soon for the culture to be identified, so in the mean time they have started her on a wide spectrum antibiotic.  As soon as they identify the bug, they will target it with a specific antibiotic.  This may be a big deal, or something that is easily cured.    We should know soon.  On the bright side, Sharon has been up on her feet three times now, holding onto the walker for a few minutes at a time.  She is also starting to eat some solid food.  Her nutritional level was measured at forty percent, so she's weak from that as well but making some small gain each day.  I feel each day that passes without incident she is closer to coming home.  This place is too quiet without the rock trimmer cracking, the ultrasonic cleaning humming and the phone ringing every ten minutes.


April 17, 2000 2100

Sorry for not updating sooner, but I have been at the hospital for the past three days and it hasn't been good.   Saturday afternoon they identified the bug as e-coil.  This was a shock to even the doctors as it's not the normal internal infection that is associated with operations.  By evening, they had located the source of the infection by means of a CT scan.  It had lodged in her back the length of the original incision for the back work.  Later that evening they took her back to the OR and reopened the incision to scrape out any bad muscle and flesh.  When they did this, large amounts of bacteria got back into the blood stream.  The complication is that the bacteria byproducts dilate the blood vessels.  The result was that her blood pressure went dangerously low.  They said that it was hit or miss that night....  With that news, I collapsed and spent the night in the ER. 

Yesterday was rather non-eventful.  They have been keeping her stable via drugs.  They pierced her chest cavity (not lung, as I erroneously posted previously)  today to drain it.  The good part was that there were no bacteria in it.

Tonight she went back into the OR for the third time.  It went better tonight and the Dr. said that the wound looked better and that the antibiotics are probably kicking in. 

It's not over yet, as she will undergo one or two more surgeries before we are out of the woods. 


April 18, 2000 2015

Today brought better news.   I met with the Infectious Diseases Dept. Doctor and he was somewhat positive about the prognosis for Sharon's recovery.  He said that she was receiving the state of the art antibiotics, and that there were still some backups if needed.  It looked, at least in the short term, that she was indeed responding as her fever decreased monotonically overnight to almost 36.9C (normal).  The next few days will tell.   When I got to the ICU, at 1700, they were just removing the breathing support and for the second time, she breathed on her own.  Still a better sign was to hear her whisper "food......gimme some damn food"!  The plan now is to watch her for a few days, or possibly more, before closing her posterior incision.  Once they are sure that the infection is responding to the antibiotics, she will go back to surgery for either clean up or closing the incision.  This will go on until clean, uninfected tissue are noted.  After that, she will have to remain on powerful antibiotics for at least six months.  At that time, she will be tested for bacteria in the site.   If this shows negative, we are home free.  If not, they will have to remove the hardware that they have installed as soon as all of the discs are fused completely.   It's going to be a long haul, but we have to be optimistic that it's all going to work out for the better.  Believe me, I don't think that I could have endured what Sharon has been through.  It has been a nightmare, but she's a fighter, and I'm betting on her putting that bug down in the second round.  When the doctor asked her how she was doing, she gave him a thumbs up!  Again, thanks to all of you for your good thoughts and prayers.  


April 20, 2000  1130


I'm almost awake as I write this.  It was another long night in the OR waiting room, but Sharon came through this one with flying colors.  With luck, this will be the last visit to the OR.  They closed the incision last night and put in drains.   The surgeon is optimistic about her condition and her prognosis.  When I visited this morning, they were thinking about moving her out of the ICU today or perhaps tomorrow.  The only outstanding issue at this moment is pain control, and it's a significant one.  This should improve as time passes.  More later.....


April 22, 2000  1150

Light at the end of the tunnel!  After one major surgery, three lesser ones and spending fifteen days in the ICU, Sharon is stable, doing well and back to the recovery ward.  This morning was the first day that she has enjoyed eating, and this is a very good indication of recovery.   But, there is a lot of physical therapy to do before she's back up on her feet.   If all goes well, Sharon should be back home in a week or two and will have to wear an upper body "turtle shell" for three months or so.  I'm off to visit (number fifty five) her now and will start to learn to assist her with the physical therapy. 

April 27, 2000  0945


Sharon is doing very well, considering the complications and setbacks.  She has been able to walk 30'-40', with the help of a walker, and sit in a chair for up to an hour or so.  She is finally off of all support machines and has a semi-permanent IV installed, which will allow antibiotic therapy for the next six weeks.   After that, if all goes well, she will go on oral antibiotics for the next four or five months.  Yesterday, we were informed that the HMO will not allow for her physical therapy at Stanford and she will probably be sent to a different facility, that the HMO contracts with, in Los Gatos (30 mi. south of Stanford).  My fingers are crossed, as it looks like home is in sight..... just a few more days without event, and she's back home.  This will present it's own special set of problems, stairs, etc, but it will mark the beginning of a full recovery.  I hope that this journal will not require many more new entries and that we can look back on this experience as a positive one, upon Sharon's recovery from her original scoliosis. problem. 


May 2, 2000  1310

We are starting the second leg of this long journey to wellness, and home is on the horizon.  Sharon was transferred to a rehab facility late Friday.  The place is not to be outdone by any marine boot camp nor the staff by any drill instructor.  This place runs strictly on "tough love".   Want to watch TV?  Get up and go watch it in the common room.  Hungry?   Go to the dining room and eat all you want.  The whole philosophy is "get off of your dead butt and do it your self"!  This is a shock, after having been tended to for the past month.  The results, however, are outstanding.  Sharon is working very hard and is now able to walk, with the use of a walker, the length of the building and back.  She has six physical therapy sessions per day, which last a total of three hours.  They are teaching her everything from how to get into and out of bed to getting dressed while wearing a body shell.  Medically, she is doing very well with only lingering minor issues to deal with.  The infection is still under control, and every day that passes reduces the chances of a flare up.  So, things are good....well relatively speaking, and I'm hoping that this coming weekend will see Sharon's return home.  More later....


May 8, 2000 0730


Well, the weekend has passed and Sharon still resides in the rehab facility.  I was hoping for her return home, but some more complications have reared their ugly heads.  The most serious of which is Sharon's sudden intolerance to the antibiotic, which she has been on for the past three weeks or so.  This manifested itself as a sudden rash over 70 % of her body.  The antibiotic has now been changed and we are waiting to see if the rash subsides.  Hopefully, she will be able to tolerate the new medication as her recovery depends on long term antibiotic treatment.   This hasn't slowed Sharon down however, and she is working very hard on the physical therapy.  She's able to get in and out of bed by herself and walk, with the walker, around the facility.  Sharon has also made some interesting friends at the rehab, one of which is shown below in the photo.

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Hi everyone!

Here I am, no hair-do, no make-up, but I'm feeling good. I'm still re-learning to walk, and promise to be back at work real soon. This is my friend Harvey, from the rehab facility. For some reason he isn't progressing as rapidly as I have been. Perhaps a little more therapy and bed rest....and a real good meal wouldn't hurt either!

Thanks to all, for your continued support,

Sharon


May 19, 2000  1235

The last week has been hectic as Sharon was released from the rehab facility, and is now at home.  There was a lot to do to prepare the house for her limitations.  She is doing well and is, in fact, upstairs with the home visit physical therapist at this moment.  When I say that she is doing well, I don't mean that she is back to her old self, as she has many limitations that are yet to be overcome.  She is able, however, to stay sitting up for a few hours now and will slowly be catching up on about 400 emails that came in while she was in the hospital.  So, please don't feel offended if you don't receive an answer to your emails immediately. 

Many thanks to all of you who have shown your support throughout this difficult time.  I am more than grateful to Dr. T. L., Dr. S. K. and all of the hospital staff for getting Sharon through this complicated ordeal, and back to her family and all of her mineral friends .  Many thanks to Dr. J. M. who is now monitoring and treating Sharon's infection.

June 3, 2000  1950

Well it's been a while since the last update and a lot of things have happened.... some good, some not so good. On the bright side, Sharon is getting around much better and sometimes sheds her walker in favor of a walking cane.  She still wears her titanium exoskeleton, which was exchanged for the "turtle shell" that she was wearing previously, and will continue to do so for months to come.  Antibiotic intolerance, which results in very bad rashes that covered a large part of her body and result in dryness and peeling, is still an issue that we are dealing with.  A new antibiotic was prescribed a few days ago and we are hopeful that this will not produce any sensitivity.  The e-coli infection is the main issue that Sharon has to deal with now, and hopefully she will beat it in the next few months.  The infectious disease doctor is very concerned that the antibiotics must be continued for as long as it takes to eradicate all of the e-coli.  Blood tests for sedimentation rate, which gives an indication of inflammation, will be done periodically and then the nuclear medicine doctors will do very sensitive tests to determine if the antibiotics can be discontinued. 

In the meantime, Sharon is busy answering email, phone calls, sending out orders, etc. and filling in her spare time with physical therapy, trying to figure out which of the 14 prescriptions to take, and IV infusing herself with antibiotics. 

June 28, 2000  1235

Hello all!  I haven't made any journal entries lately as there hasn't been anything new to report.  And, that's good!   Sharon has been doing well and has gained strength over the past weeks.  She has been able to stay up for longer periods of time now, and is back to working on minerals on a limited basis.  We were able to make it to Big Bear Lake, over Memorial Day weekend, for an astronomy convention where we have been selling meteorites each year.   It was a hard trip for her, a ten hour drive, but I think getting out in the woods and talking to people was good medicine.  She was extremely tired, but very happy to get back to doing what she likes, and does best. 

We will find out if the bones are fusing properly in about two weeks, after Sharon's next exam .  I was informed that some people who have infections at the site of the surgery fuse sooner, due to increased blood supply  to the area.  We hope that this is the case for Sharon, as she deserves a break after all the suffering that she has endured. 

July 8, 2000  1122

It seems like a very long time, but only three months has  passed since Sharon's surgery.  She had her three month evaluation a couple of days ago and although we didn't find out if fusion was taking place, the x-rays showed that the hardware is all still in place and that there are no obvious problems to be concerned about. Sharon will have to wear the brace for another three months, which coincides with the proposed time that she will re-evaluated for the infection.  Hopefully the brace and the meds will go then.  I was able to borrow the x-rays of the before and after surgery to photograph, and have posted them below.  I added the red fiducial lines, which are only for reference.  The before x-ray was taken about six months before the surgery.   By the time of the surgery, the displacement angle had increased closer to forty degrees! 
 
In the meantime, we have the San Francisco show coming up next month and preparing for, and doing the show, will be a challenge for Sharon. 

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Six months before surgery.
This had progressed to about 40 degrees by the time of surgery.

 

 

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After surgery.
Note correction is nearly perfect










Quote from Dr. T. L. at three month evaluation.

"I miss this back!"

 


Another replacement of the IV line

January 13, 2001  1200

Well, it's been quite a long time since I have updated Sharon's progress, and that's because progress has been very slow.  The nuclear medicine studies and an MRI have shown to be inconclusive as to the presence of the infection.  Sharon has been on IV antibiotics up until last month when she was switched to oral antibiotics.  At her most recent consult, with the infectious disease doctors, she was told that she would have to remain on antibiotics for another six months and then repeat the tests.  While the infection is still a serious issue, we are hoping for better news at the end of this time.  This is a bit disconcerting as that will mark about sixteen months.  As for the brace, Sharon has been slowly increasing the number of hours per day that she goes without it and best news so far is that she has cast her walker and cane away.  Intensive physical therapy has  helped a lot and her strength is gradually increasing.  

That's about it for now and I will update again if anything significant or new should arise.  Otherwise, I'll update in June.

March 11, 2002  0630

Hello all! This will probably be my last entry to this journal.
I'm very late reporting this, but I didn't want to announce any good news before we knew the long term outlook.  After one last nuclear medicine study, Sharon was taken off of the antibiotics after almost a year and a half.  We have kept our fingers crossed that the infection would not reoccur.  It has now been sufficiently long enough that the chances of reoccurrence are very low.  A recent CT Scan, at two years post op, showed no serious spinal stem problems. Otherwise, Sharon continues to do physical therapy on a regular basis and this I believe has been a major contribution to her recovery.  She is back to doing her everyday work now and she has been able to work at shows.  In retrospect, this has been a very long and difficult time but the final outcome, thus far, far out weighs the alternative had Sharon not have undergone the surgery.  

Again, thanks to all of you who have supported Sharon.  Your prayers and good wishes have meant a lot to her and I believe have helped her to keep a positive attitude throughout this difficult time. 


Sharon, doing what she does best!

Gene Cisneros                                                                   

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