Wednesday, May 13, 2009
The tweaking and the frustration continues...
Shelly's had her second programming visit now. After mucking around some we ended up leaving the settings as they were and are trying a slightly different medication schedule. The dyskinesia is in better shape now but the tremors and freezing are still issues for some of the day. The darn problem is that while the dyskinesia is less disruptive from an ability to do things standpoint, it's not a good thing physically.....very stressful on the body and the joints. Tremors and freezing aren't as stressful physically (relatively speaking of course) but they're awfully frustrating to Shelly since she has trouble getting around and doing things. As she says often....."if it's not one thing then it's the other....".
I think it's going to take a few months to figure things out....but even then there's really no such thing as "figuring it out"...the predictable unpredictability is in the very nature of the beast.....ultimately it comes down to dealing with it one day at a time and being hopeful about longer periods of stability....but without any strong expectations....easy for me to say....
Remember....never leapfrog a unicorn.....you heard it here first folks.....peace....easy...
I think it's going to take a few months to figure things out....but even then there's really no such thing as "figuring it out"...the predictable unpredictability is in the very nature of the beast.....ultimately it comes down to dealing with it one day at a time and being hopeful about longer periods of stability....but without any strong expectations....easy for me to say....
Remember....never leapfrog a unicorn.....you heard it here first folks.....peace....easy...
Sunday, April 26, 2009
And she's all lit up now...
Programming happened as scheduled on Wed. Took 3.5 hours and Shelly was a little tired at the end of it but much less so than the long programming sessions in the past. The electrons are flowing and the sub-thalamic nucleus is presumably being bathed in the fields emanating from the electrodes.....
Left brain....electrode 2...minus....monopolar....3.0 volts...60 microsecond pulse width...185 Hz
Right brain....electrode 6...minus...monopolar...3.0 volts...90 microsecond pulse width....185 Hz
I waited a few days to write this post because I've learned that it takes a few days or longer for the brain to get "used" to the stimulation and settle into some kind of pattern. The first day after programming was actually very good....no tremors or freezing. The next morning there was very high dyskinesia....remember that Shelly's meds had been notched up significantly in the last several months and now with the stimulation turned on it is very likely that she's being over-stimulated....but you can't just cut down the medication all of a sudden....one has to work it down gradually and play with the level of stimulation to find the the right operating point. It's tricky....it's all empirical....and this is going to take several days. Over the last couple of days we've been notching down the medication levels to figure out what happens. During the second half of yesterday the tremors seemed to pick up a little and so we notched the meds back up a bit last night. Today has been a decent day so far even though there has been some tremors.
But overall things are definitely looking up....it's pretty clear that the stimulation does work to control/mitigate the movement symptoms. Shelly's been driving around all over the place by herself.....the "freezing" is significantly reduced....we've eliminated the 2 a.m. medication dose so no more need to disrupt the night's sleep....wooohooooo!!...and at this point we've completely stopped the anti-anxiety medication (Clonazepam) and another tremor medication (Parsitan)....I'm hopeful that we can keep it this way.
Next checkup coming up in a couple of weeks.....in the meantime we keep tweaking and watching....and more importantly enjoying all the good moments. Other than some very occasional bouts of frustration and despair, Shelly has and continues to be the poster child for faith, resolve, patience and a positive attitude.
I really hope this is the beginning of a long period of stability....God knows she deserves it....
Left brain....electrode 2...minus....monopolar....3.0 volts...60 microsecond pulse width...185 Hz
Right brain....electrode 6...minus...monopolar...3.0 volts...90 microsecond pulse width....185 Hz
I waited a few days to write this post because I've learned that it takes a few days or longer for the brain to get "used" to the stimulation and settle into some kind of pattern. The first day after programming was actually very good....no tremors or freezing. The next morning there was very high dyskinesia....remember that Shelly's meds had been notched up significantly in the last several months and now with the stimulation turned on it is very likely that she's being over-stimulated....but you can't just cut down the medication all of a sudden....one has to work it down gradually and play with the level of stimulation to find the the right operating point. It's tricky....it's all empirical....and this is going to take several days. Over the last couple of days we've been notching down the medication levels to figure out what happens. During the second half of yesterday the tremors seemed to pick up a little and so we notched the meds back up a bit last night. Today has been a decent day so far even though there has been some tremors.
But overall things are definitely looking up....it's pretty clear that the stimulation does work to control/mitigate the movement symptoms. Shelly's been driving around all over the place by herself.....the "freezing" is significantly reduced....we've eliminated the 2 a.m. medication dose so no more need to disrupt the night's sleep....wooohooooo!!...and at this point we've completely stopped the anti-anxiety medication (Clonazepam) and another tremor medication (Parsitan)....I'm hopeful that we can keep it this way.
Next checkup coming up in a couple of weeks.....in the meantime we keep tweaking and watching....and more importantly enjoying all the good moments. Other than some very occasional bouts of frustration and despair, Shelly has and continues to be the poster child for faith, resolve, patience and a positive attitude.
I really hope this is the beginning of a long period of stability....God knows she deserves it....
Saturday, April 18, 2009
And we's a back home..
We had wheelchairs at both ends.....a lot less drama than the last time we did this....good to be home!
Heading back home today...
Our flight to SEA is scheduled to depart just before 2 p.m. We're both looking forward to being back home again.....and I'm certainly looking forward to that round of golf on Sunday morning.
To steal a phrase from Rosemary, Shelly had a good "retail therapy" day yesterday. We drove down to the outlet mall at Gilroy and I can safely declare that Shelly in a matter of hours successfully stimulated the CA economy all by her lonesome.
She had a relatively decent day with the evening hours being a little tougher with the tremors.....a yellow day with occasional streaks of green. Back in December of last year, Apr. 2009 seemed like it would never get here. It's come and gone now and while this thing is never quite "done", it sure feels good to have this phase of the journey behind us and begin the next with re-programming on Wed.
Be seein' ya soon......
To steal a phrase from Rosemary, Shelly had a good "retail therapy" day yesterday. We drove down to the outlet mall at Gilroy and I can safely declare that Shelly in a matter of hours successfully stimulated the CA economy all by her lonesome.
She had a relatively decent day with the evening hours being a little tougher with the tremors.....a yellow day with occasional streaks of green. Back in December of last year, Apr. 2009 seemed like it would never get here. It's come and gone now and while this thing is never quite "done", it sure feels good to have this phase of the journey behind us and begin the next with re-programming on Wed.
Be seein' ya soon......
Thursday, April 16, 2009
It's just not easy.....
4 a.m.
I really can't take any more of this .....Shelly's sobs quietly.
Sshhhh.....it'll all be fine baby....I say....easy for me to say....but then what else can one really say?
While Shelly had a good "surgical" day yesterday, she didn't have a very good tremor day. Tremors were a little stronger and more unpredictable than usual. Last night and this morning have also been difficult. Parkinson's has its own unique way off reminding you never to get too comfortable or take anything for granted. It's a constant battle with moments that test one's resolve....it tested mine and I'm not even the one that has PD.
It's a lot to ask of any person....even Shelly....whose courage, resolve and attitude are unmatched.
The moment has passed though.....Shelly got up and walked to the kitchen to make some tea and finish watching an Indian movie called Dharm. She mumbled something about making me some too...lucky me...
And so the battle goes....
I really can't take any more of this .....Shelly's sobs quietly.
Sshhhh.....it'll all be fine baby....I say....easy for me to say....but then what else can one really say?
While Shelly had a good "surgical" day yesterday, she didn't have a very good tremor day. Tremors were a little stronger and more unpredictable than usual. Last night and this morning have also been difficult. Parkinson's has its own unique way off reminding you never to get too comfortable or take anything for granted. It's a constant battle with moments that test one's resolve....it tested mine and I'm not even the one that has PD.
It's a lot to ask of any person....even Shelly....whose courage, resolve and attitude are unmatched.
The moment has passed though.....Shelly got up and walked to the kitchen to make some tea and finish watching an Indian movie called Dharm. She mumbled something about making me some too...lucky me...
And so the battle goes....
Wednesday, April 15, 2009
Stitches came out today...
It's a glorious day today in the Bay area....a tad windy but lovely nonetheless. We headed down to UCSF for Shelly's noon appointment a bit early and stopped on the way at Costco to pick up some flowers for Monica...Shelly's nurse...only Shelly could think about stuff like this and she's the one who had surgery....pretty darn amazing! We headed up to the 8th floor to the neurosurgery section and checked in around 1145. A couple of minutes later Monica came out and took us in to get the stitches removed. She was blown away that Shelly brought her flowers. She then proceeded to remove the dressing behind Shelly's ear....there's no good way to do this other than to just yank it off....pulls the hair....but Shelly did fine and in fact said that it didn't hurt that much. The incision had healed beautifully and a few snips later with scissors the stitches were out....and that too without a squeak from Shelly :). The dressing was also removed from her chest incision but the steri strips will stay on until they curl up and come off on their own in another week or so. So 10 mins after we checked in we were done and on our way. And it wasn't even noon yet.....now is that cool or what?
So to celebrate we walked down to Arizmendi Bakery in inner Sunset and had some bread sticks, feshly baked chocolate chip cookies and a latte. Followed that with a trip to Marshall's to buy a scarf to cover that partial mohawk....no need to cover it though...it looks beautiful.
Next stop is the programming session in Seattle next Wednesday. It's been a long wait and a frustrating journey but at least things are beginning to look up a bit.
Later gang....peace....easy.
So to celebrate we walked down to Arizmendi Bakery in inner Sunset and had some bread sticks, feshly baked chocolate chip cookies and a latte. Followed that with a trip to Marshall's to buy a scarf to cover that partial mohawk....no need to cover it though...it looks beautiful.
Next stop is the programming session in Seattle next Wednesday. It's been a long wait and a frustrating journey but at least things are beginning to look up a bit.
Later gang....peace....easy.
Saturday, April 11, 2009
All continues to be well this morning.....
Shelly had an active day yesterday. We went for a drive and believe it or not she actually did some shopping at Nordstrom Rack. Surgery furgery....pshaw! She continues to have pain on and off at the chest incision area but is managing that with Tylenol. Local friends brought us some great food for dinner....combine that with what Shelly had cooked the day we arrived and we had a big feast last night....7 of us for dinner. The apartment is working out well...very convenient and a homey feeling....also includes a garage to park your car....a HUGE deal in SF.
peace....easy...
peace....easy...
Friday, April 10, 2009
All is well this morning...
Shelly slept well last night.....pain in the incisions are under control with the use of only Tylenol and without use of Vicodin or related drugs....good thing. She's walking about and abusing me as normal....another good sign. The fever/infection watch continues.....fingers crossed. Keep sending them good vibes....
Thursday, April 09, 2009
We're back in the apartment...
Shelly did a great job of recovering in the recovery room.....where else would one recover? huh? She's still a little woozy and has a bit of nausea but did manage to put away a decent lunch....poor thing was without food and water since midnight....she's resting now......a fair amount of pain at the incision sites in the head and chest....but doing a great job of putting up with it.
Now all fingers and toes are crossed that the incisions recover well without any signs of infection....and then we can get on to re-programming when we get back to SEA. All the calls and messages and good wishes from all of you are very much appreciated. Thanks for being there.....
Now all fingers and toes are crossed that the incisions recover well without any signs of infection....and then we can get on to re-programming when we get back to SEA. All the calls and messages and good wishes from all of you are very much appreciated. Thanks for being there.....
Surgery's done..
Dr. Starr just came out and said all went well and that he frevently hopes that he doesn't have to see her for a long long time.....a big Amen to that. She'll be in recovery for an hour or so before we can see her. Stay tuned.....
What's next....you ask....
- Shelly comes out of surgery in the next hour sometime
- She'll be in recovery for at least a couple of hours
- Once she feels good enough she'll be discharged and we'll return to the rented apartment
- We'll stay in the SF area till the 18th
- We'll monitor the incision sites (behind the ear and in the chest) to make sure there are no signs of infection
- Assuming all is well the stitches will be removed probably on the 17th
- We head back home on the 18th
- The stimulator and the wires would all have been inserted by now but the system will not be turned on till we return home and have it re-programmed from scratch. A couple of reasons for this....one, Shelly's medication levels are elevated now and turning the stimulator on could effectively result in "over medication/stimulation". The medication levels will need to be titrated down gradually. Two, the programmer in Seattle, Sierra Farris is the best there is when it comes to programming and she has a lot of experience with Shelly's particular situation.
- Re-programming appointment is on the 22nd of April
Assuming all goes to plan, Shelly should be back in business by the end of April......
- She'll be in recovery for at least a couple of hours
- Once she feels good enough she'll be discharged and we'll return to the rented apartment
- We'll stay in the SF area till the 18th
- We'll monitor the incision sites (behind the ear and in the chest) to make sure there are no signs of infection
- Assuming all is well the stitches will be removed probably on the 17th
- We head back home on the 18th
- The stimulator and the wires would all have been inserted by now but the system will not be turned on till we return home and have it re-programmed from scratch. A couple of reasons for this....one, Shelly's medication levels are elevated now and turning the stimulator on could effectively result in "over medication/stimulation". The medication levels will need to be titrated down gradually. Two, the programmer in Seattle, Sierra Farris is the best there is when it comes to programming and she has a lot of experience with Shelly's particular situation.
- Re-programming appointment is on the 22nd of April
Assuming all goes to plan, Shelly should be back in business by the end of April......
Being wheeled in now....
Dr Starr and the anesthesiologist Dr Rachel Mckay did their preop
checks. All is well. We chatted briefly about Dr Starr's dog and cats.
He's also going to have a baby in the next week of so. ....you heard
it here first. :)
checks. All is well. We chatted briefly about Dr Starr's dog and cats.
He's also going to have a baby in the next week of so. ....you heard
it here first. :)
She should me out in about two and a half hours.
Sent from my iPhone
In preop now
Shelly decked out in a beautiful backless gown. IV port in after a
couple of attempts....pretty much par foe the course. Waiting for Dr.
Starr who is currently completing his previous case. Shelly is
napping. General hubub of preop area....there's some radio station
playing faintly somewhere.
couple of attempts....pretty much par foe the course. Waiting for Dr.
Starr who is currently completing his previous case. Shelly is
napping. General hubub of preop area....there's some radio station
playing faintly somewhere.
I expect she'll go in around 10.
Sent from my iPhone
Off to UCSF in another 45 minutes...
Shelly rested well last night....she's had her anti-bacterial scrub and ready to go. Spirits seem good. More later....
Wednesday, April 08, 2009
It's a new dawn tomorrow...
With many apologies to all of you for being tardy in keeping the blog updated.....
A quick recap is in order. Shelly had her right brain lead replaced on Dec. 16 of last year (2008) after we discovered there was a break in the lead. All seemed to be going well for a week or so but then there were signs of a persistent infection that had developed in the lead connector hardware and Shelly had to go back to UCSF on new year's eve to have the lead extension and stimulator hardware removed in order to address the infection. She was then on a 4 week regimen of IV antibiotics followed by a waiting period of 8 weeks to ensure that the infection was not dormant somewhere. We cam down to to SFO for a checkup on Mar. 11 and Dr. Starr declared her in good shape to have her hardware re-installed on Apr. 9.....which brings us to today...
We're in a rented apartment in SFO on 24th and Fair Oaks....came down this afternoon from Seattle along with Susan who has and is being so incredibly kind and generous in coming down with us to help Shelly and be with her for her surgery. Shelly has been nervous about this surgery.....it's really not a surprise given all the trials and tribulations she has faced in the recent past.....she's frustrated and fed up....and who wouldn't be....just about every adverse event that could occur with DBS has occurred with Shelly....it just doesn't seem fair. But tomorrow will be here very shortly and Shelly can once again resume her journey to a more comfortable daily quality of life.
Tomorrow's surgery will be an out-patient one. We check in at 8:45 a.m. and surgery is expected to start around 10...expect to be complete in a couple of hours.....then recovery...and discharge later in the afternoon assuming she's up to it.
She's in bed beside me...snoring lightly....I feel that tension that she feels.....there's not much I can do at this point other than to get her through tomorrow as quickly as possible and then on to recovery and re-programming.
Hang in there Shelly.....we'll get through this one too....very soon.....
More updates tomorrow.....peace......easy....
A quick recap is in order. Shelly had her right brain lead replaced on Dec. 16 of last year (2008) after we discovered there was a break in the lead. All seemed to be going well for a week or so but then there were signs of a persistent infection that had developed in the lead connector hardware and Shelly had to go back to UCSF on new year's eve to have the lead extension and stimulator hardware removed in order to address the infection. She was then on a 4 week regimen of IV antibiotics followed by a waiting period of 8 weeks to ensure that the infection was not dormant somewhere. We cam down to to SFO for a checkup on Mar. 11 and Dr. Starr declared her in good shape to have her hardware re-installed on Apr. 9.....which brings us to today...
We're in a rented apartment in SFO on 24th and Fair Oaks....came down this afternoon from Seattle along with Susan who has and is being so incredibly kind and generous in coming down with us to help Shelly and be with her for her surgery. Shelly has been nervous about this surgery.....it's really not a surprise given all the trials and tribulations she has faced in the recent past.....she's frustrated and fed up....and who wouldn't be....just about every adverse event that could occur with DBS has occurred with Shelly....it just doesn't seem fair. But tomorrow will be here very shortly and Shelly can once again resume her journey to a more comfortable daily quality of life.
Tomorrow's surgery will be an out-patient one. We check in at 8:45 a.m. and surgery is expected to start around 10...expect to be complete in a couple of hours.....then recovery...and discharge later in the afternoon assuming she's up to it.
She's in bed beside me...snoring lightly....I feel that tension that she feels.....there's not much I can do at this point other than to get her through tomorrow as quickly as possible and then on to recovery and re-programming.
Hang in there Shelly.....we'll get through this one too....very soon.....
More updates tomorrow.....peace......easy....
Thursday, January 15, 2009
It's been a rare GREEN afternoon and evening...
....after a very rough stretch....and even around noon today it looked like the verdict was going to remain Red...it was a real pleasant sight to come home from work and find Shelly flitting around the kitchen. Made me smile....the little wins mean a lot these days.
Shelly's just moved into the yellow zone as she goes to bed. I wish her a slumber-filled night.
On the medical front Shelly had an appointment this past Monday with her neuro. Even her neuro was somewhat taken aback by her condition post hardware removal. What we're trying now is increasing doses of her base medications to find the most comfortable operating point. As of today we've increased Sinemet to 1 and 1/2 tablet 6 times a day instead of 1 tablet. Requip stays at 1mg 6 times a day. We've added 0.25mg Clonazepam 3 times during the day and 0.5mg at bedtime. This should help with reduction of anxiety and also help with sleep. There's no clear evidence yet that this is significantly improving things....we'll just have to continue to try different combinations till we find a functional yet tolerable (from a side effect perspective) dosage level.
The daily IV antibiotic regimen has been going fine. It only takes about 5 minutes every morning. The difficult part about all this is that when the meds are not working Shelly is essentially incapacitated. All she can do is lie down and try to somehow get her body in a position so she can tolerate the tremors....tough tough tough.....it can be very frustrating and drive her to tears occasionally. It's also so darn unpredictable...it's a pure guess how a 3 hour segment of the day is going to go. It can all red or all green or somewhere in the middle.
I'm ever so grateful that Shelly's parents live with us and can be with her during the day. I'm not sure how I'd manage without them. I'm also so glad that all of you take the time to visit with her whether its during the raging reds spells or those most welcome grateful green moments......I know she really cherishes the time with you....keep it comin'....
peace.....easy.....
Shelly's just moved into the yellow zone as she goes to bed. I wish her a slumber-filled night.
On the medical front Shelly had an appointment this past Monday with her neuro. Even her neuro was somewhat taken aback by her condition post hardware removal. What we're trying now is increasing doses of her base medications to find the most comfortable operating point. As of today we've increased Sinemet to 1 and 1/2 tablet 6 times a day instead of 1 tablet. Requip stays at 1mg 6 times a day. We've added 0.25mg Clonazepam 3 times during the day and 0.5mg at bedtime. This should help with reduction of anxiety and also help with sleep. There's no clear evidence yet that this is significantly improving things....we'll just have to continue to try different combinations till we find a functional yet tolerable (from a side effect perspective) dosage level.
The daily IV antibiotic regimen has been going fine. It only takes about 5 minutes every morning. The difficult part about all this is that when the meds are not working Shelly is essentially incapacitated. All she can do is lie down and try to somehow get her body in a position so she can tolerate the tremors....tough tough tough.....it can be very frustrating and drive her to tears occasionally. It's also so darn unpredictable...it's a pure guess how a 3 hour segment of the day is going to go. It can all red or all green or somewhere in the middle.
I'm ever so grateful that Shelly's parents live with us and can be with her during the day. I'm not sure how I'd manage without them. I'm also so glad that all of you take the time to visit with her whether its during the raging reds spells or those most welcome grateful green moments......I know she really cherishes the time with you....keep it comin'....
peace.....easy.....
Saturday, January 10, 2009
Red and Green....and no, I'm not talking about Christmas...
I'm a talkin' about a scale to describe Shelly's daily battle. See this post back in 2005 for details.
For those of you who have known Shelly prior to Dec. 2005 when she had her original DBS, Shelly's condition now is very similar in nature to what it was then...only a bit worse...since the disease itself has progressed for an additional 3 years now. Ever since about Jan. 4, Shelly's day has been about 70% Red. During the day Shelly takes her medications approximately every 3 hours starting at 0600. This means that on the average in any given 3 hour period Shelly is tremoring very strongly and essentially incapacitated for about 2 hours. On occasion she will be red throughout the period. It's very difficult for her and she'll have to deal with this for the next 3 months.....early April is the earliest that Dr. Starr expects she'll be ready for the hardware to be re-inserted.
On the good news side, it is pretty clear that DBS does work. In spite of having had every "small" risk come to pass - broken lead extension, broken lead and infection - I'm thankful that DBS is an option for Shelly and I know that she is very thankful too. DBS has been a tough and unfortunate journey....but the alternative is tons worse.
Shelly's going to need a lot of support and encouragement from all of us. She's going to need a lot of resolve and determination to put up with her daily trials.
Together we'll make sure she wins. I am so glad all of you out there are on our side.
Cheers.....peace......easy......
For those of you who have known Shelly prior to Dec. 2005 when she had her original DBS, Shelly's condition now is very similar in nature to what it was then...only a bit worse...since the disease itself has progressed for an additional 3 years now. Ever since about Jan. 4, Shelly's day has been about 70% Red. During the day Shelly takes her medications approximately every 3 hours starting at 0600. This means that on the average in any given 3 hour period Shelly is tremoring very strongly and essentially incapacitated for about 2 hours. On occasion she will be red throughout the period. It's very difficult for her and she'll have to deal with this for the next 3 months.....early April is the earliest that Dr. Starr expects she'll be ready for the hardware to be re-inserted.
On the good news side, it is pretty clear that DBS does work. In spite of having had every "small" risk come to pass - broken lead extension, broken lead and infection - I'm thankful that DBS is an option for Shelly and I know that she is very thankful too. DBS has been a tough and unfortunate journey....but the alternative is tons worse.
Shelly's going to need a lot of support and encouragement from all of us. She's going to need a lot of resolve and determination to put up with her daily trials.
Together we'll make sure she wins. I am so glad all of you out there are on our side.
Cheers.....peace......easy......
Escape from Alcatraz...
OK so it wasn't Alcatraz really.....but UCSF isn't that far from it either...
So why haven't you updated the blog the last few days....asked a friend this morning.
'cuz....got a problem with that....huh?
Just kidding....just didn't get around to it....must've had bloggers block....actually I was just plain tired.
We got out of UCSF at the very first opportunity last Wed the 7th. Spending 24 hours a day in a hospital room just isn't that exciting you know. Shelly's stitches were removed that morning around 10 a.m. by Monica Volz who is Dr. Starr's clinical nurse practitioner...an NP. We then waited for Shelly's tremors to settle and as soon as it lessened somewhere around 12:25 p.m. we were off. Our flight was scheduled for later that night at 9 p.m. We decided to go on an earlier flight...standby....there were plenty of open seats. We headed down to SFO and by the time we got there Shelly's tremors had picked up again and were very strong. I had to return the rental car first, but there was no way that Shelly was going to be able to walk to the AirTrain. So I parked in one of Hertz' slots, left Shelly in the car and had to go to the 4th floor of the car rental center to locate Annette of Hertz whom Akshay had called while we were driving. She asked me to head back down and ask the Hertz Gold desk there to drop us at the terminal....tell them Annette said so...she said. I did. And they did. Nice of them. But that was the easy part...
We unloaded Shelly and the luggage on the curbside at SFO international terminal. Shelly isn't able to walk. So how do I get her inside? I made her sit on one of the suitcases and hold on to the post of a sign that was curbside. Poor thing was shaking quite strongly....and conscious of all the folks around her....which made it even worse. I then ran inside to the Virgin America counter and told them I needed a wheel chair. The lady at the counter was very helpful. She called the wheelchair bureaucrats who told her it would take at least 15 minutes to get one. So out I ran to the curbside and sat with Shelly....still shaking a lot. On the way out I grabbed a luggage cart and had stacked our bags on it and asked Shelly to sit on the bag. After 10 mins. I decided that this was no way to wait.....and decided to wheel Shelly into the terminal on the baggage cart. If you think steering a supermarket cart with a bad wheel is bad.....you ain't seen nothing yet. We weaved our way to the door....it was quite the sight...and just as we entered the guy with the wheelchair was coming out. Phew!
The wheelchair shook all the way to the counter....we checked in and headed off to security. We asked for a private screening to lesson the stress on Shelly. Well the TSA sent two women to do the pat down. They were really nice but they decided to use this opportunity to train one of the women who was a rookie. Bad idea....she had no idea what to do....Shelly tremors away meanwhile.....finally the "trainer" decided to skip the training and do the pat down herself. Thank the Lord for small mercies.....we made our way to the gate.....Shelly's tremors continue unabated. She's very uncomfortable....we find a corner and hang out waiting for the flight.
The gate staff were very very helpful indeed. We pre-boarded....the wheelchair guy took us down the ramp and then transferred Shelly to an "aisle" wheelchair and we finally got her to her seat. We had reserved a whole row for ourselves. By the time the flight departed, Shelly's meds had kicked in just a bit and the flight went by in relative comfort...the key word here being "relative". It really is all relative.
Ratika and Akshay and Susan met us at the airport. Even though we had requested a wheelchair, there was none to be found when we landed. Fortunately Shelly was able to walk slowly to the car.....and after 30 mins. on very rainy and occasionally flooded streets....we were HOME. Quite a relief...
We had escaped Alcatraz....but Shelly's trials and tribulations are destined to continue for a while.
So why haven't you updated the blog the last few days....asked a friend this morning.
'cuz....got a problem with that....huh?
Just kidding....just didn't get around to it....must've had bloggers block....actually I was just plain tired.
We got out of UCSF at the very first opportunity last Wed the 7th. Spending 24 hours a day in a hospital room just isn't that exciting you know. Shelly's stitches were removed that morning around 10 a.m. by Monica Volz who is Dr. Starr's clinical nurse practitioner...an NP. We then waited for Shelly's tremors to settle and as soon as it lessened somewhere around 12:25 p.m. we were off. Our flight was scheduled for later that night at 9 p.m. We decided to go on an earlier flight...standby....there were plenty of open seats. We headed down to SFO and by the time we got there Shelly's tremors had picked up again and were very strong. I had to return the rental car first, but there was no way that Shelly was going to be able to walk to the AirTrain. So I parked in one of Hertz' slots, left Shelly in the car and had to go to the 4th floor of the car rental center to locate Annette of Hertz whom Akshay had called while we were driving. She asked me to head back down and ask the Hertz Gold desk there to drop us at the terminal....tell them Annette said so...she said. I did. And they did. Nice of them. But that was the easy part...
We unloaded Shelly and the luggage on the curbside at SFO international terminal. Shelly isn't able to walk. So how do I get her inside? I made her sit on one of the suitcases and hold on to the post of a sign that was curbside. Poor thing was shaking quite strongly....and conscious of all the folks around her....which made it even worse. I then ran inside to the Virgin America counter and told them I needed a wheel chair. The lady at the counter was very helpful. She called the wheelchair bureaucrats who told her it would take at least 15 minutes to get one. So out I ran to the curbside and sat with Shelly....still shaking a lot. On the way out I grabbed a luggage cart and had stacked our bags on it and asked Shelly to sit on the bag. After 10 mins. I decided that this was no way to wait.....and decided to wheel Shelly into the terminal on the baggage cart. If you think steering a supermarket cart with a bad wheel is bad.....you ain't seen nothing yet. We weaved our way to the door....it was quite the sight...and just as we entered the guy with the wheelchair was coming out. Phew!
The wheelchair shook all the way to the counter....we checked in and headed off to security. We asked for a private screening to lesson the stress on Shelly. Well the TSA sent two women to do the pat down. They were really nice but they decided to use this opportunity to train one of the women who was a rookie. Bad idea....she had no idea what to do....Shelly tremors away meanwhile.....finally the "trainer" decided to skip the training and do the pat down herself. Thank the Lord for small mercies.....we made our way to the gate.....Shelly's tremors continue unabated. She's very uncomfortable....we find a corner and hang out waiting for the flight.
The gate staff were very very helpful indeed. We pre-boarded....the wheelchair guy took us down the ramp and then transferred Shelly to an "aisle" wheelchair and we finally got her to her seat. We had reserved a whole row for ourselves. By the time the flight departed, Shelly's meds had kicked in just a bit and the flight went by in relative comfort...the key word here being "relative". It really is all relative.
Ratika and Akshay and Susan met us at the airport. Even though we had requested a wheelchair, there was none to be found when we landed. Fortunately Shelly was able to walk slowly to the car.....and after 30 mins. on very rainy and occasionally flooded streets....we were HOME. Quite a relief...
We had escaped Alcatraz....but Shelly's trials and tribulations are destined to continue for a while.
Monday, January 05, 2009
...and we're going to have to put up with a bumpy ride for a few months..
Shelly had another real tough night with pretty much constant and high intensity tremors. Her tremors didn't settle much most of today either though the intensity wasn't as high as last night. Around 4:30 p.m., however, it finally settled and we went for a nice walk around the corridors....it was nice to see her walk without any tremors....that's the nature of this beast...one can go from utter helplessness and deep frustration to normalcy and vice versa in a matter of minutes.
Dr. Starr dropped by before Shelly went for her walk. He changed her dressing and said the incisions were healing nicely. Shelly doesn't have any pain around the incisions either....a good sign that there's no fluid collecting there. After consulting with the infectious diseases team he's decided to go with an IV antibiotic called ceftriaxone that is very effective in taking care of staph epidermidis. The other plus is that it only has to be administered once every 24 hours. The case worker here is arranging for the home health care agency in Seattle to set up the IV at home. That'll happen on Thursday after we're back. The stitches should come off on Wed morning and we should be headed home Wed night....destiny willing.....now that's going to be sweeeeeeet.
Shelly is sleeping as I write this. She had a good dinner and then just fell asleep....must be pooped....continuous tremors can really suck the energy out of her. Here's wishing her a restful night.
The rest of this journey looks like this...
- IV antibiotics plus another oral antibiotic for the next 4 weeks
- come back to see Dr. Starr in early March to assess how things are going
- assuming all is well the hardware will be re-implanted in early April...it would be an out-patient procedure
The next 3 months are going to be tough.....it's going to take all of Shelly's determination and courage to get through it...there'll be ups and downs...no doubt.....but....Shelly's up to it too....NO DOUBT.
We're so ready to get back home....peace....easy...
Dr. Starr dropped by before Shelly went for her walk. He changed her dressing and said the incisions were healing nicely. Shelly doesn't have any pain around the incisions either....a good sign that there's no fluid collecting there. After consulting with the infectious diseases team he's decided to go with an IV antibiotic called ceftriaxone that is very effective in taking care of staph epidermidis. The other plus is that it only has to be administered once every 24 hours. The case worker here is arranging for the home health care agency in Seattle to set up the IV at home. That'll happen on Thursday after we're back. The stitches should come off on Wed morning and we should be headed home Wed night....destiny willing.....now that's going to be sweeeeeeet.
Shelly is sleeping as I write this. She had a good dinner and then just fell asleep....must be pooped....continuous tremors can really suck the energy out of her. Here's wishing her a restful night.
The rest of this journey looks like this...
- IV antibiotics plus another oral antibiotic for the next 4 weeks
- come back to see Dr. Starr in early March to assess how things are going
- assuming all is well the hardware will be re-implanted in early April...it would be an out-patient procedure
The next 3 months are going to be tough.....it's going to take all of Shelly's determination and courage to get through it...there'll be ups and downs...no doubt.....but....Shelly's up to it too....NO DOUBT.
We're so ready to get back home....peace....easy...
Sunday, January 04, 2009
The road is still a bumpy one...
Shelly had a reall good day yesterday....sitting up, walking around the corridors, eating well, watching TV...and I was feeling pretty good about things when I left around 9:30 p.m. to go get some sleep at my nephew's house really while Ratika spent the night with Shelly. I got home and got comfortable in bed and had just flipped the light off....ready for some deep slumber. The phone rings...it's about 11:30 p.m....it's Ratika...she sounds a little scared though she's trying to also sound brave at the same time. Shelly's started having some really strong tremors that don't seem to want to stop. Shelly doesn't know what to do, neither does Ratika....and neither does the RN. The RN decides to give her some strong pain medicine (Dilaudid) which it turns out is not relevant as Shelly is not having pain and Dilaudid is a really strong opioid. She also gives Shelly some more Requip (dopamine agonist)...which is probably helpful.
I quickly change and head back to the hospital. Shelly is shaking a lot....she's in a great deal of discomfort which in turn has increased her anxiety...which further exacerbates her tremors...it can be a vicious cycle. The RN has paged the neurosurgery resident who's in the OR helping with an emergency surgery and his initial advice to the RN is....ask them (i.e. us) to do what they would have done to manage this situation prior to the first DBS surgery back in 2005. Not that helpful since we never really had to deal with this kind of situation back then. I decide to do nothing other than to sit next to her, talk to her softly without any stress in my voice and hold her hands or feet or leg down as needed. I'm hoping that she'll drift off to sleep...doesn't happen. She's moaning softly in discomfort....I feel very uncomfortable she says....I don't really know what to do other than just be with her till the discomfort passes. Time moves very slowly....I'm very very sleepy and tired but sleep is not an option right now. I ask Ratika to get some sleep on the pull out couch/bed and she does....reluctantly....she wants me to sleep too....but she's pooped and worried.
It's probably 2:30 or 3:00 a.m.....the neuro surgery resident comes by and apologizes that he couldn't get here earlier due to the surgery. We discuss Shelly's situation....she's seems a little calmer and sleepier at this point. He indicated that most likely the increased tremor is due to her brain and body finally coming around to accepting that the stimulation is no longer there. Turning off stimulation doesn't immediately cause old symptoms to return...it can take a few days....it would appear that for Shelly the time had come a few hours ago. I think we were all caught by surprise by the intensity of the response...we'd been feeling good (too good and too early in hindsight) about the fact that Shelly's symptoms didn't seem too bad even after the stimulator had been removed. This had been something that had been bugging me earlier but I didn't listen to my own concerns....it's all about managing one's expectations as I've noted many times in earlier posts....I had neglected to heed my own advice....it's really difficult sometimes to stay positive and manage one's expectations.
Somehow made it through the night in the chair. 6 a.m. came around and it was time for Shelly's meds. The tremors settled down in about 45 mins and she slept well. The rest of the day went pretty well too....she ate well....walked around....visited with friends and family who dropped by....email....TV...phone...the works. Ratika headed out to the airport around 7:30 p.m. and as of this writing is still unsure about making it to Seattle due to the snow there....that's all we need...more snow. Shelly's tremors were a little less under control starting with the 7 p.m. meds that didn't seem to be as effective but she did get some sleep. The nurse just came in to give her the 10 p.m. dose....she's trying to sleep again....not feeling very comfortable....but not like last night....it's all relative....little wins are good.
I'm going to try and get some sleep too....but who knows what destiny holds in store for us tonight....
later people....peace....easy...
I quickly change and head back to the hospital. Shelly is shaking a lot....she's in a great deal of discomfort which in turn has increased her anxiety...which further exacerbates her tremors...it can be a vicious cycle. The RN has paged the neurosurgery resident who's in the OR helping with an emergency surgery and his initial advice to the RN is....ask them (i.e. us) to do what they would have done to manage this situation prior to the first DBS surgery back in 2005. Not that helpful since we never really had to deal with this kind of situation back then. I decide to do nothing other than to sit next to her, talk to her softly without any stress in my voice and hold her hands or feet or leg down as needed. I'm hoping that she'll drift off to sleep...doesn't happen. She's moaning softly in discomfort....I feel very uncomfortable she says....I don't really know what to do other than just be with her till the discomfort passes. Time moves very slowly....I'm very very sleepy and tired but sleep is not an option right now. I ask Ratika to get some sleep on the pull out couch/bed and she does....reluctantly....she wants me to sleep too....but she's pooped and worried.
It's probably 2:30 or 3:00 a.m.....the neuro surgery resident comes by and apologizes that he couldn't get here earlier due to the surgery. We discuss Shelly's situation....she's seems a little calmer and sleepier at this point. He indicated that most likely the increased tremor is due to her brain and body finally coming around to accepting that the stimulation is no longer there. Turning off stimulation doesn't immediately cause old symptoms to return...it can take a few days....it would appear that for Shelly the time had come a few hours ago. I think we were all caught by surprise by the intensity of the response...we'd been feeling good (too good and too early in hindsight) about the fact that Shelly's symptoms didn't seem too bad even after the stimulator had been removed. This had been something that had been bugging me earlier but I didn't listen to my own concerns....it's all about managing one's expectations as I've noted many times in earlier posts....I had neglected to heed my own advice....it's really difficult sometimes to stay positive and manage one's expectations.
Somehow made it through the night in the chair. 6 a.m. came around and it was time for Shelly's meds. The tremors settled down in about 45 mins and she slept well. The rest of the day went pretty well too....she ate well....walked around....visited with friends and family who dropped by....email....TV...phone...the works. Ratika headed out to the airport around 7:30 p.m. and as of this writing is still unsure about making it to Seattle due to the snow there....that's all we need...more snow. Shelly's tremors were a little less under control starting with the 7 p.m. meds that didn't seem to be as effective but she did get some sleep. The nurse just came in to give her the 10 p.m. dose....she's trying to sleep again....not feeling very comfortable....but not like last night....it's all relative....little wins are good.
I'm going to try and get some sleep too....but who knows what destiny holds in store for us tonight....
later people....peace....easy...
Friday, January 02, 2009
"Sorry-for-the-delay" update
Apologies for not posting an update yesterday...I was a little beat yesterday...hanging around in a hospital room all day can start to be a little fatiguing..
They installed the PICC line yesterday in her upper left arm. That's a Peripherally Inserted Central Catheter for the delivery of IV antibiotics. For Shelly they used the basilic vein which is a large superficial (i.e. shallow) vein and therefore easier to access. The tech uses ultrasound to find the vein....she glopped on the gooey stuff....ran the probe over it...you've got a good one....she declared with a satisfied look.....much to Shelly's delight....for general IV's and blood draws Shelly's veins are notoriously hard to find and she usually ends up getting stuck multiple times before they're successful. To insert a PICC line they first insert a wire (I think it's called an "introducer") to the required length, then thread the PICC line over this wire and pull the wire out. It can be a little painful when they have to make the initial incision and Shelly wailed away like a little baby....OK she didn't really....just a few well timed screeches of pain and a declaration that she'd rather leave this world than have to put up with this. It was over quickly....and a subsequent x-ray confirmed that the line was positioned correctly in the superior vena cava in the heart. With this in place they could now remove the other IV connections.
Shelly had a decent day yesterday....she got a little uncomfortable in the evening as she has in the past few days....some nausea....some headache....general fedupness....crap load of antibiotics and other drugs....makes one sick....heck just writing about it makes me sick....
Akshay returned home yesterday morning and Ratika came in last night. She spent the night with Shelly and I took the much needed break to go to my nephew's house in Pacifica and get some rest and more importantly a hot shower...oh...and a shave...felt human again....
Shelly had a bit of a fitful night....maybe slept for about 3 hours...even so she looked pretty good this morning and as of this writing has managed to eat a decent breakfast and lunch and keep it down....let's hope it keeps up through the evening. On my way in to the hospital this morning I had stopped at a Safeway to buy a few food things....as I was pondering which brand of cracker to get my phone rings and a voice says
Mr. Krishnamurty, this is Dr. Starr...I wanted to give you an update on Shelly...is this a good time for you?
Any time you want to talk to me is a good time for me ....I thought...I was impressed that he'd take the time to call me personally on a Saturday morning...
He indicated that of the 3 cultures they'd taken - 2 from behind the ear area and 1 from the chest area where the stimulator was - the 2 from the behind the ear area had grown organisms...staph epidermidis....which occurs commonly on our skin. The culture from the chest area had not grown any organisms yet. This is all favorable news....staph epidermidis is relatively speaking less aggressive than staph aureus which aparently tends to "travel" more and colonize as a bio-film on implanted hardware. This doesn't guarantee that the staph has not migrated to the brain leads but based on everything we know at this point it likely has not (key word here is "likely")...and that's good. The antibiotic course is still expected to take 4 weeks and they'll also want her to continue with the additional oral antibiotic called Rifampan.
The neuro surgery resident, Dr. Bloch, came by to look at the incision....he ripped off the old one....said that the incision looked good....and changed the dressing....he did a real horrible job of changing the dressing...must have been a bad-dressing-day for him. They put this clear film over the no-stick pad...and he didn't trim this correctly and stuck it all over Shell'y hair...annoying Shelly to no end. We're going to have the nurse change it out if we can.
Shelly is either sleering or snoping at the moment, can't really tell which.....Ratika is dozing on the pull out couch/bed......there are a few local SFO friends dropping by to visit in a bit....
it's 1517.....and you're all caught up.....
p.s. forgot to mention that Ratika and I went down to Arizmendi's Bakery on 9th between Judah and Irving and had their delicious pizza of the day....which today was spinach, feta and kalamata olives....yum yum. You've got to check it out sometime when you're here.
peace...easy...
They installed the PICC line yesterday in her upper left arm. That's a Peripherally Inserted Central Catheter for the delivery of IV antibiotics. For Shelly they used the basilic vein which is a large superficial (i.e. shallow) vein and therefore easier to access. The tech uses ultrasound to find the vein....she glopped on the gooey stuff....ran the probe over it...you've got a good one....she declared with a satisfied look.....much to Shelly's delight....for general IV's and blood draws Shelly's veins are notoriously hard to find and she usually ends up getting stuck multiple times before they're successful. To insert a PICC line they first insert a wire (I think it's called an "introducer") to the required length, then thread the PICC line over this wire and pull the wire out. It can be a little painful when they have to make the initial incision and Shelly wailed away like a little baby....OK she didn't really....just a few well timed screeches of pain and a declaration that she'd rather leave this world than have to put up with this. It was over quickly....and a subsequent x-ray confirmed that the line was positioned correctly in the superior vena cava in the heart. With this in place they could now remove the other IV connections.
Shelly had a decent day yesterday....she got a little uncomfortable in the evening as she has in the past few days....some nausea....some headache....general fedupness....crap load of antibiotics and other drugs....makes one sick....heck just writing about it makes me sick....
Akshay returned home yesterday morning and Ratika came in last night. She spent the night with Shelly and I took the much needed break to go to my nephew's house in Pacifica and get some rest and more importantly a hot shower...oh...and a shave...felt human again....
Shelly had a bit of a fitful night....maybe slept for about 3 hours...even so she looked pretty good this morning and as of this writing has managed to eat a decent breakfast and lunch and keep it down....let's hope it keeps up through the evening. On my way in to the hospital this morning I had stopped at a Safeway to buy a few food things....as I was pondering which brand of cracker to get my phone rings and a voice says
Mr. Krishnamurty, this is Dr. Starr...I wanted to give you an update on Shelly...is this a good time for you?
Any time you want to talk to me is a good time for me ....I thought...I was impressed that he'd take the time to call me personally on a Saturday morning...
He indicated that of the 3 cultures they'd taken - 2 from behind the ear area and 1 from the chest area where the stimulator was - the 2 from the behind the ear area had grown organisms...staph epidermidis....which occurs commonly on our skin. The culture from the chest area had not grown any organisms yet. This is all favorable news....staph epidermidis is relatively speaking less aggressive than staph aureus which aparently tends to "travel" more and colonize as a bio-film on implanted hardware. This doesn't guarantee that the staph has not migrated to the brain leads but based on everything we know at this point it likely has not (key word here is "likely")...and that's good. The antibiotic course is still expected to take 4 weeks and they'll also want her to continue with the additional oral antibiotic called Rifampan.
The neuro surgery resident, Dr. Bloch, came by to look at the incision....he ripped off the old one....said that the incision looked good....and changed the dressing....he did a real horrible job of changing the dressing...must have been a bad-dressing-day for him. They put this clear film over the no-stick pad...and he didn't trim this correctly and stuck it all over Shell'y hair...annoying Shelly to no end. We're going to have the nurse change it out if we can.
Shelly is either sleering or snoping at the moment, can't really tell which.....Ratika is dozing on the pull out couch/bed......there are a few local SFO friends dropping by to visit in a bit....
it's 1517.....and you're all caught up.....
p.s. forgot to mention that Ratika and I went down to Arizmendi's Bakery on 9th between Judah and Irving and had their delicious pizza of the day....which today was spinach, feta and kalamata olives....yum yum. You've got to check it out sometime when you're here.
peace...easy...
Thursday, January 01, 2009
The view from 805L
OK so I just wanted to create a meaningless post........why?....because I can...hehe...
Jan. 1 2009 @ UCSF
Calendar is part of the eclectic decor of 805L..Shelly had a decent night last night.....pain in the incision areas...more so in the chest incision than in the behind-the-ear ones....but nothing that a combo of hydromorphone and hydrocodone couldn't take care of in short order.
This morning she was ravenously hungry and had some of the unappealing oatmeal provided by the hospital chefs....you're not likely to see any of them on the Food Channel anytime soon. She did, however, polish it off after I added some crumbled graham cracker cookies to it. Not surprisingly she upchucked all of it an hour later....happens after all that anesthesia and opioid drugs. She's all settle down now...with some anti-nausea meds...and a bit later had a good scrambled eggs and toast breakfast that I brought up from the cafeteria....along with some hot tea. She then got up from bed, freshened up a bit and sat in a chair for a while doing email and calling folks and ordering me around...you know....her comfort zone...the picture is one I took yesterday but you'll get the "picture"..
The infectious diseases resident dropped by......the cultures haven't shown any organisms yet, but it's still early...will probably see something in the next 2-3 days. Have to wait for this before identifying the specific antibiotic regimen. They're planning to be aggressive re the antibiotic treatment, i.e. assume as if the brain lead hardware is also infected even though it doesn't show any signs of that as far as they can tell.The neurosurgery resident...Bloch...dropped by a bit later...did his usual neuro responsiveness tests....looking good...
If you've been paying to the previous posts then you know that Shelly will have to be without stimulation for the next 3 months assuming all goes well. We've been concerned about what that's going to be like for her...we know it's going to be challenging and cause greater discomfort....but we (Ratika, Akshay and I) had kinda forgotten what that looked like back on 2005. Memories are starting to come back....it seems so long ago....but one can start to see the additional tremors and dyskinesia.....significantly stronger on the right side. It's going to take some experimentation with her meds to figure out the optimum operating point during this period. It's certainly not going to be easy but I'm sure we'll figure it out together.
Shelly's resting comfortably...time for her meds...poor thing has to be woken up....Nebraska's leading Clemson 23-21 on this small TV from the stone ages....but at least I can watch the games today...in color even...OK dudettes and dudes....hopefully you've woken up by now and started to shake off that hangover....HNY
Wednesday, December 31, 2008
Surgery Update...
Shelly managed to get an early OR slot....wooohoooo!.....and was rolled in at 5:52 p.m.....barring a few moments of tears while waiting in the corridor on a gurney just outside the OR she was as brave as ever...
At 7:19 p.m .we got a call from the OR nurse that the surgery was complete, all was well and she was in recovery...
Dr. Starr came up a few minutes later and explained that everything went according to plan. He was glad that we made it down to SFO as fast as we did. He did see evidence of infection in the wire behind the ear and felt that removing the wire and the pulse generator was absolutely the right thing to do. She's currently on a broad-based IV antibiotic (Vancomycin) currently. Once they get results from cultures they've taken from three different areas they'll be able to use a more specific antibiotic....these results will be available over the next 3-5 days as the cultures grow.
It seems likely that we'll remain in SFO till end of next week so that we can have all the stitches removed and inspected before we return. This will also give us time to have the home IV antibiotic system in place in Bellevue before we return.
Shelly is still in the recovery room and expected back to the room....yes she does have her own room...primitive as it is....in another hour or so.
More reports later.....
Peace....Health.....and a HNY.....
At 7:19 p.m .we got a call from the OR nurse that the surgery was complete, all was well and she was in recovery...
Dr. Starr came up a few minutes later and explained that everything went according to plan. He was glad that we made it down to SFO as fast as we did. He did see evidence of infection in the wire behind the ear and felt that removing the wire and the pulse generator was absolutely the right thing to do. She's currently on a broad-based IV antibiotic (Vancomycin) currently. Once they get results from cultures they've taken from three different areas they'll be able to use a more specific antibiotic....these results will be available over the next 3-5 days as the cultures grow.
It seems likely that we'll remain in SFO till end of next week so that we can have all the stitches removed and inspected before we return. This will also give us time to have the home IV antibiotic system in place in Bellevue before we return.
Shelly is still in the recovery room and expected back to the room....yes she does have her own room...primitive as it is....in another hour or so.
More reports later.....
Peace....Health.....and a HNY.....
Well the verdict's in....
Well.....the immediate uncertainty has been cleared....
Dr. Starr feels pretty strongly that the best course of action is to remove the lead extension wire and the pulse generator. Not what we wanted to hear.....but not unexpected....$%&#%$@^
So we're waiting in a queue for an OR slot....Shelly surgery is what is called an "add on" slot....and this morning when Dr. Starr was trying to book a slot she was number 12 or 13 in the queue. He thinks it could be late tonight or maybe even sometime tomorrow morning....
Poor thing is on NPO (nil per os in Latin....Nothing by mouth) status. But if it looks like the surgery slot is going to be delayed much beyond tonight then they would get a fixed slot further out and let her eat dinner.
So here's the bottom line for now...
- Surgery sometime in the next 12 hours or so....hopefully...
- then a course of IV antibiotics for probably the next 4 weeks...a few days in SFO...rest at home
- stay in SFO depends on getting the home IV antibiotic thing set up in Seattle....probably earliest is Mon or Tue of next week....so we'll probably be in SFO till then
I'm starving to death.....so is Akshay.....need to go find some grub....
Later people....keep sending those happy vibes Shelly's way......
Dr. Starr feels pretty strongly that the best course of action is to remove the lead extension wire and the pulse generator. Not what we wanted to hear.....but not unexpected....$%&#%$@^
So we're waiting in a queue for an OR slot....Shelly surgery is what is called an "add on" slot....and this morning when Dr. Starr was trying to book a slot she was number 12 or 13 in the queue. He thinks it could be late tonight or maybe even sometime tomorrow morning....
Poor thing is on NPO (nil per os in Latin....Nothing by mouth) status. But if it looks like the surgery slot is going to be delayed much beyond tonight then they would get a fixed slot further out and let her eat dinner.
So here's the bottom line for now...
- Surgery sometime in the next 12 hours or so....hopefully...
- then a course of IV antibiotics for probably the next 4 weeks...a few days in SFO...rest at home
- stay in SFO depends on getting the home IV antibiotic thing set up in Seattle....probably earliest is Mon or Tue of next week....so we'll probably be in SFO till then
I'm starving to death.....so is Akshay.....need to go find some grub....
Later people....keep sending those happy vibes Shelly's way......
Not how Shelly planned to spend new year's eve 2009....
Room 805L....UCSF....drab aging rooms and corridors....the cafeteria on the 2nd floor....driving up to UCSF on Judah....lots of stop signs....the parking garage on Parnassus....Green level G82....it's all waaaaaaaaaaay too familiar....it shouldn't be.....but it is...
What's up you ask....or should be if you're not asking....
As you already know Shelly's been having this low grade fever for about a week now. She's been on antibiotics and we've been going back and forth to our Seattle docs to have things checked out. Last Monday Shelly was also "re-programmed" from scratch....took almost 4 hours....and it always drains Shelly.....but things went really well...and she was starting to feel pretty good. In a couple of days we'll be over this fever thing and then clear sailing we thought...
I guess we were getting way ahead of ourselves....another lesson that if you don't manage your expectations carefully then you get surprised....but more on that in a future post...
I came home from work yesterday and took a look at Shelly's incision area behind her ear and saw that it was a bit more swollen than before and I could see a bit of drainage...not encouraging signs....I took a picture and sent it off via email to Dr. Starr for info.....wasn't really worried about it at that point....
Had some dinner.....Shelly did too.....I commented on how good she looked....how active she was and had been all day.....I was actually starting to get comfortable....
Then I hear this ding on my iPhone....there's a new email from Dr. Starr....he's quite concerned after seeing the picture I sent....feels pretty strongly that there might be an infection that is resident in the "hardware"....the wires or the stimulator....and indicates that the most likely option in these cases is that the hardware needs to be removed....IV antibiotics given for a while to clear out the infection.....then re-insert the hardware after about 2-3 months.....she'd have to be without the stimulation for that period....there is a very slim chance that treating her with IV antibiotics without removing any hardware could work....but it's very slim....and you lose time doing that....
My heart sank.....do I tell Shelly this now?.....how will she take it?.....she's been through SOOOOOOOOOOO much.....this is such a cruel hand that fate has dealt.....she doesn't deserve it......
But I knew what I MUST do.....I went upstairs and told her.....and then told mom and dad.....I didn't even have to look at their faces or hear them say anything to know how they were feeling at that moment.....I told the kids on the phone......ditto.....
Then calls to her Seattle neuro......after figuring out how to have her paged......I tell her about Dr. Starr's email....she emails Dr. Starr....she doesn't know how to page him....she also thinks that trying IV antibiotics in Seattle for a couple of days isn't a good option....she advises that we fly down to SFO pronto.....that's where Dr. Starr is....he's the expert on what to do in these situations.....just get down there as fast as you can....
Meanwhile the kids had come home.....
what flights.....
where should we stay...
who's going....can the kids join on this visit...they just took time off from their respective work/lab...
what should we take...
how long do we need to stay....
did you remember to book a car...
should we take the CPAP machine.....
have you taken all her meds...
what's the weather like in SFO...do we need coats....rain gear.....
have you informed work re being absent again....
It was right about midnight now.....the arrangements done.....bags mostly packed....alarms set for 4 a.m.....flight at 0710....
Shelly is being brave....but very scared.....fed up doesn't even come close to describing what she's feeling....deep despondency comes over her in waves.....we all try to make her feel better.....it's bloody difficult....what can one really say in this situation....the uncertainty midst the certainty of having to un do what she just had done a couple of weeks ago....no...this can't be....this isn't right.....we finally fall off to a fitful sleep.....
that brings us to 1000 this morning....we're in baggage claim in SFO....I'm trying to reach Dr. Starr to figure out where we should meet him....everyone's on vacation....there's no front office to call....I finally reach the on call service and ask for Dr. Starr to be paged.....finally get a call back from the neuro resident....Dr. Potts....go thorugh the whole background as quickly as I can....he "gets" it quickly....thank the Lord.....he asks us to meet him in ER...he'll contact Dr. Starr in the meantime....
we check into ER....change into the gown....IV....blood draw....more blood draw...O2 levels....blood pressure...temp....weight....allergies?.....pain?.....even you know the drill by now....
I get a call from the man himself....Dr. Starr calls me on my cell phone....said he'll be in to see Shelly in a couple of hours....that was 4 hours ago....said he'd book an OR slot in any case.....might change his mind after he sees her....but doesn't sound likely....
back to 805L.....
Shelly is resting...snoring lightly.....Akshay is leaning back in a chair....laptop on his lap (duh)....eyes closed....he's tired too...poor guy....and we haven't eaten hardly anything all day....we don't want to leave and miss Dr. Starr....hope he gets here soon....
Hey he just popped in.....back in a bit.....
peace....
What's up you ask....or should be if you're not asking....
As you already know Shelly's been having this low grade fever for about a week now. She's been on antibiotics and we've been going back and forth to our Seattle docs to have things checked out. Last Monday Shelly was also "re-programmed" from scratch....took almost 4 hours....and it always drains Shelly.....but things went really well...and she was starting to feel pretty good. In a couple of days we'll be over this fever thing and then clear sailing we thought...
I guess we were getting way ahead of ourselves....another lesson that if you don't manage your expectations carefully then you get surprised....but more on that in a future post...
I came home from work yesterday and took a look at Shelly's incision area behind her ear and saw that it was a bit more swollen than before and I could see a bit of drainage...not encouraging signs....I took a picture and sent it off via email to Dr. Starr for info.....wasn't really worried about it at that point....
Had some dinner.....Shelly did too.....I commented on how good she looked....how active she was and had been all day.....I was actually starting to get comfortable....
Then I hear this ding on my iPhone....there's a new email from Dr. Starr....he's quite concerned after seeing the picture I sent....feels pretty strongly that there might be an infection that is resident in the "hardware"....the wires or the stimulator....and indicates that the most likely option in these cases is that the hardware needs to be removed....IV antibiotics given for a while to clear out the infection.....then re-insert the hardware after about 2-3 months.....she'd have to be without the stimulation for that period....there is a very slim chance that treating her with IV antibiotics without removing any hardware could work....but it's very slim....and you lose time doing that....
My heart sank.....do I tell Shelly this now?.....how will she take it?.....she's been through SOOOOOOOOOOO much.....this is such a cruel hand that fate has dealt.....she doesn't deserve it......
But I knew what I MUST do.....I went upstairs and told her.....and then told mom and dad.....I didn't even have to look at their faces or hear them say anything to know how they were feeling at that moment.....I told the kids on the phone......ditto.....
Then calls to her Seattle neuro......after figuring out how to have her paged......I tell her about Dr. Starr's email....she emails Dr. Starr....she doesn't know how to page him....she also thinks that trying IV antibiotics in Seattle for a couple of days isn't a good option....she advises that we fly down to SFO pronto.....that's where Dr. Starr is....he's the expert on what to do in these situations.....just get down there as fast as you can....
Meanwhile the kids had come home.....
what flights.....
where should we stay...
who's going....can the kids join on this visit...they just took time off from their respective work/lab...
what should we take...
how long do we need to stay....
did you remember to book a car...
should we take the CPAP machine.....
have you taken all her meds...
what's the weather like in SFO...do we need coats....rain gear.....
have you informed work re being absent again....
It was right about midnight now.....the arrangements done.....bags mostly packed....alarms set for 4 a.m.....flight at 0710....
Shelly is being brave....but very scared.....fed up doesn't even come close to describing what she's feeling....deep despondency comes over her in waves.....we all try to make her feel better.....it's bloody difficult....what can one really say in this situation....the uncertainty midst the certainty of having to un do what she just had done a couple of weeks ago....no...this can't be....this isn't right.....we finally fall off to a fitful sleep.....
that brings us to 1000 this morning....we're in baggage claim in SFO....I'm trying to reach Dr. Starr to figure out where we should meet him....everyone's on vacation....there's no front office to call....I finally reach the on call service and ask for Dr. Starr to be paged.....finally get a call back from the neuro resident....Dr. Potts....go thorugh the whole background as quickly as I can....he "gets" it quickly....thank the Lord.....he asks us to meet him in ER...he'll contact Dr. Starr in the meantime....
we check into ER....change into the gown....IV....blood draw....more blood draw...O2 levels....blood pressure...temp....weight....allergies?.....pain?.....even you know the drill by now....
I get a call from the man himself....Dr. Starr calls me on my cell phone....said he'll be in to see Shelly in a couple of hours....that was 4 hours ago....said he'd book an OR slot in any case.....might change his mind after he sees her....but doesn't sound likely....
back to 805L.....
Shelly is resting...snoring lightly.....Akshay is leaning back in a chair....laptop on his lap (duh)....eyes closed....he's tired too...poor guy....and we haven't eaten hardly anything all day....we don't want to leave and miss Dr. Starr....hope he gets here soon....
Hey he just popped in.....back in a bit.....
peace....
Saturday, December 27, 2008
Recuperating nicely except for this niggling fever...
It's been exactly a week since we returned from SFO and what a week it's been....the snow has dominated our lives here in the Puget sound area....and even more so on the hill we're on.
...which also made life a bit challenging with respect to Shelly's recovery. We had an appointment on Tue to get her stitches removed. The roads on our hill were border-line impassable but we somehow made it down...talk about nerve wracking....and fortunately 405 wasn't bad. Well when the doc looked at the incisions they didn't think they were ready to come out and asked us to come back the next day. Further complicating matters was that they took Shelly's temperature and it was 99.9....so we had to go get a blood test done (CBC and sed rate) immediately (stat you know...now that I'm all medically experienced...)....plus Shelly was put on antibiotic immediately (Keflex 500mg 4 times a day). The big concern was infection and Sierra Farris and Dr. Giroux felt that if the temperature went above 100 then we should head for the ER and get IV antibiotics going (turned out that I contacted Dr. Starr later in the week and he didn't actually think we needed to go to ER unless the temperature went above 102 and the incisions were very swollen etc....that made me feel a bit more relaxed). Great....that's all we needed now....we rushed to the drug store and acquired a thermometer and picked up the antibiotics and somehow made it back up our hill.....wondering all along if we'd be able to get down again the next day to go back to the doc.
Well on Wed we again did successfully navigate down the hill....the incisions looked a lot better and the stitches were removed successfully....with Shelly whining just a bit :)....ok fine....I'm sure it hurt like heck....she was very brave about it...
And the stitches did come out....really....evidence below....
We then had to get another blood test done....since she still had a fever around 99.8.....and got a prescription to get yet another blood draw for the day after Christmas....poor Shelly....the techs always have difficulty finding the right vein to draw blood...and she invariably gets poked 2-3 times before they're successful....not fun.....a side benefit of all this blood work is that we became experts at where to park in Evergreen hospital to minimize the walk to the lab...stuff you never really plan on being experts on....but hey...
We did return yesterday for the 3rd blood draw....Shelly's temperature was normal yesterday....and we were beginning to feel like it was behind us....but not so....I just took her temp and it's 99.8....darn....
Well...she's taken some Tylenol and is resting.....pretty fed up with this whole thing....and who can blame her for that....BUT....Shelly's been active.....she cooked up a storm last night....she gave the kids food today as they headed back to their apartments....all good....
Now we just have to get this stupid fever thing behind us.....
...which also made life a bit challenging with respect to Shelly's recovery. We had an appointment on Tue to get her stitches removed. The roads on our hill were border-line impassable but we somehow made it down...talk about nerve wracking....and fortunately 405 wasn't bad. Well when the doc looked at the incisions they didn't think they were ready to come out and asked us to come back the next day. Further complicating matters was that they took Shelly's temperature and it was 99.9....so we had to go get a blood test done (CBC and sed rate) immediately (stat you know...now that I'm all medically experienced...)....plus Shelly was put on antibiotic immediately (Keflex 500mg 4 times a day). The big concern was infection and Sierra Farris and Dr. Giroux felt that if the temperature went above 100 then we should head for the ER and get IV antibiotics going (turned out that I contacted Dr. Starr later in the week and he didn't actually think we needed to go to ER unless the temperature went above 102 and the incisions were very swollen etc....that made me feel a bit more relaxed). Great....that's all we needed now....we rushed to the drug store and acquired a thermometer and picked up the antibiotics and somehow made it back up our hill.....wondering all along if we'd be able to get down again the next day to go back to the doc.
Well on Wed we again did successfully navigate down the hill....the incisions looked a lot better and the stitches were removed successfully....with Shelly whining just a bit :)....ok fine....I'm sure it hurt like heck....she was very brave about it...
And the stitches did come out....really....evidence below....
We then had to get another blood test done....since she still had a fever around 99.8.....and got a prescription to get yet another blood draw for the day after Christmas....poor Shelly....the techs always have difficulty finding the right vein to draw blood...and she invariably gets poked 2-3 times before they're successful....not fun.....a side benefit of all this blood work is that we became experts at where to park in Evergreen hospital to minimize the walk to the lab...stuff you never really plan on being experts on....but hey...
We did return yesterday for the 3rd blood draw....Shelly's temperature was normal yesterday....and we were beginning to feel like it was behind us....but not so....I just took her temp and it's 99.8....darn....
Well...she's taken some Tylenol and is resting.....pretty fed up with this whole thing....and who can blame her for that....BUT....Shelly's been active.....she cooked up a storm last night....she gave the kids food today as they headed back to their apartments....all good....
Now we just have to get this stupid fever thing behind us.....
Saturday, December 20, 2008
On the subject of taking things for granted...
Ratika and Akshay (our kids) joined us on the trip to SFO for the surgery. They each took time off from their work to be with Shelly and me....they did it on their own without being asked....and they always made sure we knew that they would be there for us as long as we needed them and more. While I expect that of our children....and that's how Shelly and I've been raised....it occurs to me that it's far too easy to take it for granted. We're ever so fortunate to have such great kids who understand the value of family and friends and caring. Thanks R & A for your love and support....we're blessed indeed!
p.s. and no Ratika....it does not mean I'm going to buy you an iPhone :)
p.s. and no Ratika....it does not mean I'm going to buy you an iPhone :)
We's a back home....
Left on a 10 a.m. flight out of Oakland this morning. The winter wonderland was a beautiful sight from the air as our flight came in to land....we weren't quite sure we'd be able to drive home. But thanks to Charlie B and his trusty 4-wheel Jeep we were all able to make it back home safely. Shelly slept through the flight....I was concerned about air in the brain post surgery causing discomfort while flying but it didn't appear that Shelly had any discomfort related to this....whew!
Assuming the weather cooperates, Shelly will have her stitches removed on Tuesday. We'll continue to be very watchful for any signs of infection....not a good thing when you have stuff implanted in your body. Shelly's happy to be back...her parents are even happier....it must have been very difficult for them to not be there while she was having surgery...the kids are real happy to be back and get back to their work/lab.
We're very lucky to have Dr. Starr of UCSF as Shelly's neurosurgeon. He's highly regarded in the medical community, very skilled, he exudes a quiet confidence and he takes the time to explain things and answer your questions without any airs...and he replies to my emails to him without making you feel like he's doing you some big favor. Thanks Dr. Starr and thanks Monica Volz (his nurse practitioner) who has always been so helpful and supportive.
Here's looking forward to some extended "normalcy" for Shelly....it's tough enough already without broken wires and such mucking things up.
Thanks again to all of you for being incredibly caring and supportive. It's no small thing....
peace....good health....cheers...
Assuming the weather cooperates, Shelly will have her stitches removed on Tuesday. We'll continue to be very watchful for any signs of infection....not a good thing when you have stuff implanted in your body. Shelly's happy to be back...her parents are even happier....it must have been very difficult for them to not be there while she was having surgery...the kids are real happy to be back and get back to their work/lab.
We're very lucky to have Dr. Starr of UCSF as Shelly's neurosurgeon. He's highly regarded in the medical community, very skilled, he exudes a quiet confidence and he takes the time to explain things and answer your questions without any airs...and he replies to my emails to him without making you feel like he's doing you some big favor. Thanks Dr. Starr and thanks Monica Volz (his nurse practitioner) who has always been so helpful and supportive.
Here's looking forward to some extended "normalcy" for Shelly....it's tough enough already without broken wires and such mucking things up.
Thanks again to all of you for being incredibly caring and supportive. It's no small thing....
peace....good health....cheers...
Thursday, December 18, 2008
Bye bye UCSF...
We're outta there and we're hanging out with our close friends in San Jose.....things are good so far. Shelly got a clean bill of health from Dr. Starr who checked her out this morning and changed her dressings. Shelly and the kids are in a deep slumber at the moment....they're pooped......physical fatigue from the stress of surgery for Shelly...physical fatigue from the death of sleep in the last several days for the kids...but the deep slumber also comes from all the tension draining from your system.
Shelly's tromping around the house unaided....nice to see...it's still early in the recovery period and we'll have to watch things closely....in this business one quickly learns to not take anything for granted...but it's a good start nevertheless. We're most likely heading home on Saturday sometime, weather permitting.
OK...time to get back to page 135 of John Grisham's The Appeal and chill a bit....
Shelly's tromping around the house unaided....nice to see...it's still early in the recovery period and we'll have to watch things closely....in this business one quickly learns to not take anything for granted...but it's a good start nevertheless. We're most likely heading home on Saturday sometime, weather permitting.
OK...time to get back to page 135 of John Grisham's The Appeal and chill a bit....
Wednesday, December 17, 2008
Images of progress today...
Shelly's had a pretty good day....
Lying down and resting in the morning...
Sitting up and resting....
Eating...
First walk...
Gazing adoringly....
Dr. Starr stopped by around 6 p.m. this evening and ran into Shelly walking in the corridor with the aid of a walker. We then had a hallway conversation....he said the post-op MRI looked really good and the lead targeting was very good...almost exactly in the same position as before. He thought Shelly could be discharged sometime late morning tomorrow. He'll come check her out tomorrow sometime around 10 a.m. and Monica (his nurse) should also be around to change her dressings on the incisions. So looks like a good possibility that we'll be out of the hospital tomorrow afternoon.....we'll be staying with some good friends of our in San Jose. He said the earliest he would recommend we fly out is Saturday....this has to do with brain surgery resulting in some air being trapped in the brain...which normally gets absorbed by the body in a few days. Also we have one more decision to make....do we stay till Wed of next week and have him remove the stitches or do we go home to Seattle and have that done there. I think we're leaning towards the latter....so Shelly can get back to home home quicker.....
later dudettes and dudes.....peace....
Lying down and resting in the morning...
Sitting up and resting....
Eating...
First walk...
Gazing adoringly....
Dr. Starr stopped by around 6 p.m. this evening and ran into Shelly walking in the corridor with the aid of a walker. We then had a hallway conversation....he said the post-op MRI looked really good and the lead targeting was very good...almost exactly in the same position as before. He thought Shelly could be discharged sometime late morning tomorrow. He'll come check her out tomorrow sometime around 10 a.m. and Monica (his nurse) should also be around to change her dressings on the incisions. So looks like a good possibility that we'll be out of the hospital tomorrow afternoon.....we'll be staying with some good friends of our in San Jose. He said the earliest he would recommend we fly out is Saturday....this has to do with brain surgery resulting in some air being trapped in the brain...which normally gets absorbed by the body in a few days. Also we have one more decision to make....do we stay till Wed of next week and have him remove the stitches or do we go home to Seattle and have that done there. I think we're leaning towards the latter....so Shelly can get back to home home quicker.....
later dudettes and dudes.....peace....
0700 update...
The neuro resident dude came by and did...as you might have already suspected...a neuro check thing. You know....point the little pencil flashlight into her eyes....ask her to follow his finger with her eyes....lift your hands up in the air....lift your left leg...now your right......ask her what day it is....why she's here...what city she's in....stuff that drives her crazy....they all ask her that....actually we....er I...asked her that several times last night. At one point she answered the question and then followed that immediately with I'm not stupid....cracked us all up. Now I really know she's doing better.
0600 check in report
We woke up at 0400....man that was so tough.....showered up and came to the hospital by 0520. Shelly had had a decent night. Her pain level is better....a 5 on a 10 scale....last night she reported 8. She did have one episode of nausea and they gave her some anti-nausea medication. That's what hospitals do....if you have a bad X thing then they give you anti-X medication. Just thought you'd like to know the inner workings of our medical system.
Shelly is communicative when she's not dozing....which is what she's doing at the moment....dozing that is. I think she's getting hungry....let me go find out what delectable delights are due to be delivered...
later gang.....
Shelly is communicative when she's not dozing....which is what she's doing at the moment....dozing that is. I think she's getting hungry....let me go find out what delectable delights are due to be delivered...
later gang.....
Finally....we're done....
Well just when we'd resigned ourselves to sitting around for another few hours for the surgery to complete, we were surprised to see Dr. Starr walk into the surgical waiting area at 6:30 p.m. in his street clothes....looking very relaxed...you know...a been there done that kinda look. Which was certainly confidence building. He said everything went according to plan....good good good. He showed us the broken wire and explained that this is first generation technology...the wire not actually a straight wire....think of it as a very thin wire like a coiled telephone handset wire. Apparently 2nd gen wires are being developed (not yet FDA approved) that will be much better...but that's not an option right now.
Much relief.....the interminable wait had finally come to a close. We still had to wait for over a couple of hours before we were allowed to go up and see Shelly in the PACU (Post Anesthesia Care Unit). She was very groggy and in pain but recognized us and was delighted to see us.......the sentiment was mutual my dear. The kids and I took turns hanging out with her since PACU is a very crowded recovery unit with beds wall to wall and very little room to move around for the nurses. A couple of hours later Shelly was temporarily moved back to the pre-op area since there were no rooms available. After she was moved we visited with her briefly before they told us they did have a room. We were temporarily overjoyed at the prospect of the room.....the first look at the very small room shared by three patients did nothing to make us feel better...in some ways pre-op was a better environment to be in....but as we've learned at UCSF one has very little control of anything.
As of this writing the kids and I have come "home" for a short nap. We'll be back at the hospital by 0500 to see Shelly. I felt bad leaving her but we weren't allowed to stay in the room anyway......she was pretty groggy and needed some rest.....we needed a few winks too....the kids are pooped....ok fine....so am I
Shelly's headed in the right direction......your support all day was fantastic and I passed it on to her at every opportunity....I know it made a huge difference to her....and to us.
I'm heading to bed now....hoping that Shelly wakes up with less pain. Oh btw...she did scarf down a cup of apple sauce...poor thing...she was starving.
More tomorrow...er...later today....
peace......easy....
--
cheers.....rajan
Much relief.....the interminable wait had finally come to a close. We still had to wait for over a couple of hours before we were allowed to go up and see Shelly in the PACU (Post Anesthesia Care Unit). She was very groggy and in pain but recognized us and was delighted to see us.......the sentiment was mutual my dear. The kids and I took turns hanging out with her since PACU is a very crowded recovery unit with beds wall to wall and very little room to move around for the nurses. A couple of hours later Shelly was temporarily moved back to the pre-op area since there were no rooms available. After she was moved we visited with her briefly before they told us they did have a room. We were temporarily overjoyed at the prospect of the room.....the first look at the very small room shared by three patients did nothing to make us feel better...in some ways pre-op was a better environment to be in....but as we've learned at UCSF one has very little control of anything.
As of this writing the kids and I have come "home" for a short nap. We'll be back at the hospital by 0500 to see Shelly. I felt bad leaving her but we weren't allowed to stay in the room anyway......she was pretty groggy and needed some rest.....we needed a few winks too....the kids are pooped....ok fine....so am I
Shelly's headed in the right direction......your support all day was fantastic and I passed it on to her at every opportunity....I know it made a huge difference to her....and to us.
I'm heading to bed now....hoping that Shelly wakes up with less pain. Oh btw...she did scarf down a cup of apple sauce...poor thing...she was starving.
More tomorrow...er...later today....
peace......easy....
--
cheers.....rajan
Tuesday, December 16, 2008
Quick update...
We came back from coffee around 1230 or so and I decided to check and see what the situation was. We learned that Shelly had still not started surgery. The poor lady had been lying in pre-op following her CT scan since about 1130 or so. She had the big metal frame around her head with the bolts screwed in tight into her skull. I sent Akshay up and she broke into tears....she was so alone and frustrated. Well the kids and I took turns being with her. While this was frustrating for all of us, it was just that Dr. Starr had not finished his first surgery and couldn't have started earlier. But they didn't inform us....which was annoying as heck....but not unexpected.
The good news is that I did get to see Dr. Starr and discuss the procedure in more detail. He was as patient and helpful as ever. Even as I talked to him I felt so bad for what Shelly is going through....she's so brave....and more importantly even through her pain and wooziness and frustation she constantly asks about the kids and her parents and reminds us to contact all of you...and to get something to eat.....and....and.....one has a lot to learn about selflessness from her.
They finally wheeled her away for real at 1:53 p.m. The nurse indicated that he would send down an update about a couple of hours into the process.
Fingers crossed......now the wait begins in earnest....all the very best to you Shells....
The good news is that I did get to see Dr. Starr and discuss the procedure in more detail. He was as patient and helpful as ever. Even as I talked to him I felt so bad for what Shelly is going through....she's so brave....and more importantly even through her pain and wooziness and frustation she constantly asks about the kids and her parents and reminds us to contact all of you...and to get something to eat.....and....and.....one has a lot to learn about selflessness from her.
They finally wheeled her away for real at 1:53 p.m. The nurse indicated that he would send down an update about a couple of hours into the process.
Fingers crossed......now the wait begins in earnest....all the very best to you Shells....
The process has started...
Shelly had a very restful night....wooohooo!
Got up around 0530. and we left for the hospital right at 0700. Got in around 0745 and checked in. We went up to the pre-op room at 0820....change into the hospital gown....bag all the clothes and shoes into a gigantic yellow plastic bag...wait...........................................wait................................
Jamie, an RN shows up and takes vitals.....her printed notes still show 1700 as time of surgery.....
A bit later Monica, Dr. Starr's nurse shows up and does a number of tests of the stimulator to confirm that the right brain lead is in fact broken. She does this by cranking up the voltage in steps to 8.5V....well beyond what could be tolerated if it were working correctly. Shelly hardly feels any sensation....good thing.....confirms that the lead does need replacing. We do the same....or attempt to do the same with the left brain lead to confirm it too is working correctly....even at 2.0V in monopolar mode Shelly feels side effects....mouth pulls...tingling...etc. Good again....it's doing what is expected. After measuring a bunch of impedances, Monica returns Shelly's settings to the original ones. Shelly is doing great through all of this. It's now around 0930 and Shelly's meds have worn off. Still doing pretty well though.
Next step is to hook up an IV. A real challenge with Shelly....it's impossible to find her veins. Monica pokes her on both hands without luck...it's painful to watch. She gives up and calls up the anesthesia person to do it. We wait........wait.....anethesia person shows up and is able to find her vein in the first attempt....nice job! This is an important step since this is how they would administer the anesthesia.
The next step is the all dreaded "stereotactic frame" step. Shelly is very very nervous about this. It's a large, metallic, heavy frame that goes around the head and is attached via these gigantic screws that are screwed on pretty tight into the side of the head...on 4 sides. Will I be aware of them putting it on? she asks again and again. I reassure her....they'll give you some Versed real soon that'll send you into la-la land in about 15 seconds....she doesn't look convinced....the last time around they gave her Versed before she noticed the frame...so she doesn't really have any recollection of it except that coming out of surgery she remembers this heavy weight on her head that really freaked her out. Let's hope it's better this time. Picture of the frame below.....also note those gigantic screws...
Well to get her frame on she needed to sit in a wheelchair....but guess what....there wasn't a wheelchair in the pre-op area......so we waited.........and waited........finally they managed to recover one.....by now it was close to 1030.....we got her into the chair.....
1035.....they're just starting to give her the Versed and put the frame on....Mr. Krishnamurty, this would be a good time for you to say you goodbyes and we'll see you later....says Monica very politely...
I head down to meet up with the kids....we're now sitting in the Arizmendi cafe on 9th and Judah....eating some pastries and some really good pizza....
I suspect she's in surgery by now....but not sure......
peace....easy...
Got up around 0530. and we left for the hospital right at 0700. Got in around 0745 and checked in. We went up to the pre-op room at 0820....change into the hospital gown....bag all the clothes and shoes into a gigantic yellow plastic bag...wait...........................................wait................................
Jamie, an RN shows up and takes vitals.....her printed notes still show 1700 as time of surgery.....
A bit later Monica, Dr. Starr's nurse shows up and does a number of tests of the stimulator to confirm that the right brain lead is in fact broken. She does this by cranking up the voltage in steps to 8.5V....well beyond what could be tolerated if it were working correctly. Shelly hardly feels any sensation....good thing.....confirms that the lead does need replacing. We do the same....or attempt to do the same with the left brain lead to confirm it too is working correctly....even at 2.0V in monopolar mode Shelly feels side effects....mouth pulls...tingling...etc. Good again....it's doing what is expected. After measuring a bunch of impedances, Monica returns Shelly's settings to the original ones. Shelly is doing great through all of this. It's now around 0930 and Shelly's meds have worn off. Still doing pretty well though.
Next step is to hook up an IV. A real challenge with Shelly....it's impossible to find her veins. Monica pokes her on both hands without luck...it's painful to watch. She gives up and calls up the anesthesia person to do it. We wait........wait.....anethesia person shows up and is able to find her vein in the first attempt....nice job! This is an important step since this is how they would administer the anesthesia.
The next step is the all dreaded "stereotactic frame" step. Shelly is very very nervous about this. It's a large, metallic, heavy frame that goes around the head and is attached via these gigantic screws that are screwed on pretty tight into the side of the head...on 4 sides. Will I be aware of them putting it on? she asks again and again. I reassure her....they'll give you some Versed real soon that'll send you into la-la land in about 15 seconds....she doesn't look convinced....the last time around they gave her Versed before she noticed the frame...so she doesn't really have any recollection of it except that coming out of surgery she remembers this heavy weight on her head that really freaked her out. Let's hope it's better this time. Picture of the frame below.....also note those gigantic screws...
Well to get her frame on she needed to sit in a wheelchair....but guess what....there wasn't a wheelchair in the pre-op area......so we waited.........and waited........finally they managed to recover one.....by now it was close to 1030.....we got her into the chair.....
1035.....they're just starting to give her the Versed and put the frame on....Mr. Krishnamurty, this would be a good time for you to say you goodbyes and we'll see you later....says Monica very politely...
I head down to meet up with the kids....we're now sitting in the Arizmendi cafe on 9th and Judah....eating some pastries and some really good pizza....
I suspect she's in surgery by now....but not sure......
peace....easy...
Monday, December 15, 2008
The day before surgery numero dos...
Well..Shelly's had a fairly long day....more emotionally taxing than physically. It's the whole anticipation of the surgery that, at some level, takes more of a toll than the surgery itself. She's fallen asleep watching some movie on the computer....I'm going to have to wake her in an hour so she can take her final dose of meds for the day and then go back to sleep again.
We left home this morning at 0745 for UCSF. It sleeted heavily just as we set out....that's all we needed....clearly we didn't have enough things to deal with already....we make it through to UCSF without incident...
Today's visit to UCSF was incredibly inefficient. UCSF, by all accounts, is a highly renowned medical school that has some of the best medical professionals. The administration and operations of UCSF, however, are at the other end of the competency scale.
We were asked to show up for the pre-op process at 0930.
We dutifully show up by 0900 and go to L-170 for the "Prepare" meeting. It's this little crowded room with a diverse set of folks waiting for all kinds of medical intervention.
We sign in.....a lady finally picks up the list....stumbles through Shelly's name....and tells us that our appointment is at 1030. Go have some coffee and breakfast and come back around 10....she offers.
Shelly's just had her meds....is all nervous.....she's "freezing"....unable to walk....so Akshay gets her a wheel chair (in exchange for his driver's license) and we cross the street and head down to Starbucks to get some coffee and horrible pastries.
We trundle back around 1000.
We then sign in again and have to fill out this long questionnaire....remember this questionnaire...I'll come back to it.
We finally get called in for registration....by this very detached lady....fill out the consent form....sign away all your rights....then wait some more.
A voice from inside calls out something that suggests a Russian trying to say Shailaja....we look up and see a nurse kinda person waving from beyond a door.
We go up and she takes Shelly's vitals - height We'll say you're 5 foot 3 she announces....weight...she does not announce the number....obviously in a momentary fit of tact....BP..126/54 is very good she says....we now do ECG and take some blood she says pointing to yet another door....you go wait there she dismisses me.
Shelly comes back out 15 mins. later.....good thing....
We then wait for another nurse practitioner.
We get the call and enter yet another door....we sit down....aforesaid nurse practitioner then proceeds to ask us the same questions that we spent mucho minutes filling out in the previously mentioned questionnaire. She has to enter it into the medical records system....
Many minutes go by....she then does some cursory examination of Shelly's heart and breathing with a stethescope...and pronounces her ready for surgery.
She informs us that we should show up for surgery at 3 p.m. on Tuesday....huh?....Dr. Starr's scheduling office had told us that we should show up on Tue at 10 a.m. She calls Dr. Starr's office....gets vm...leaves message to call us. She suggest...nicely...that it might be best for us to confirm the time with Dr. Starr's office directly.....great....
It is now almost noon.....we leave Shelly and Ratika at the UCSF food court across the street and Akshay and I head for Dr. Starr's office.....where we're informed that 1000 is probably a good time to show up on Tue...there still seemed to be some question as to the exact time....we leave a little puzzled....and rejoin Shelly and Ratika at the food court...UCSF food court isn't exactly the gourmet destination of the world....but what the heck...you make do with what you can get....pizza and Dr. Pepper....with nachos to round it out...
It's 1240 by now.....MRI is scheduled for 1300 in another building.....Shelly's next med dose is at 1300, so the meds have essentially worn off....she's freezing and finding it hard to move....complicated by the 100s of folks in the food court...she's conscious....causing even more freezing....we decide to go get the wheelchair again....Akshay runs across the street and brings one......we head down to the imaging lab.
You guessed it...we have to check in and register again.....the dreaded clip board with the questionnaire and consent form stares at you....it's multi-sided and multiple sheets.....it's the same information
AAAAAAAAAAAARRRRRRGGGGGGHHHHHH @#%@#
Finally we're checked in and it's time for the MRI....fortunately Dr. Starr's nurse shows up.....she actually knows a few things...I take this opportunity to ask about the surgery schedule....you need to be there at 0800 she says.....
AAAAAAAAAAARRRRRRRGGGGGHHHHHHHHHHH #%$@&$^!*%#^$@
MRI is done.....we got a good set of images she says....phew!....I couldn't possibly fill out another questionnaire...
We take her word for the surgery schedule....the only other person to ask would be Dr. Starr himself....
We get back to the car in the parking garage....Shelly is quite tired by now....we bundle her in and set out for "home"....it starts to sleet mildly as we leave....very symmetric day you know....as we near home the weather actually clears.....the sun appears.....we see the Pacific ocean....it looks beautiful....we pull into Rockaway beach and take a couple of pictures with the kids....it feels good.....it's going to be a good day tomorrow....
So we're off again tomorrow morning....need to leave home at 0700....so much for sleeping in....
Well gang....time to go wake up Shelly for her last dose of meds for the day.....and catch a few winks myself...
peace....easy.....
We left home this morning at 0745 for UCSF. It sleeted heavily just as we set out....that's all we needed....clearly we didn't have enough things to deal with already....we make it through to UCSF without incident...
Today's visit to UCSF was incredibly inefficient. UCSF, by all accounts, is a highly renowned medical school that has some of the best medical professionals. The administration and operations of UCSF, however, are at the other end of the competency scale.
We were asked to show up for the pre-op process at 0930.
We dutifully show up by 0900 and go to L-170 for the "Prepare" meeting. It's this little crowded room with a diverse set of folks waiting for all kinds of medical intervention.
We sign in.....a lady finally picks up the list....stumbles through Shelly's name....and tells us that our appointment is at 1030. Go have some coffee and breakfast and come back around 10....she offers.
Shelly's just had her meds....is all nervous.....she's "freezing"....unable to walk....so Akshay gets her a wheel chair (in exchange for his driver's license) and we cross the street and head down to Starbucks to get some coffee and horrible pastries.
We trundle back around 1000.
We then sign in again and have to fill out this long questionnaire....remember this questionnaire...I'll come back to it.
We finally get called in for registration....by this very detached lady....fill out the consent form....sign away all your rights....then wait some more.
A voice from inside calls out something that suggests a Russian trying to say Shailaja....we look up and see a nurse kinda person waving from beyond a door.
We go up and she takes Shelly's vitals - height We'll say you're 5 foot 3 she announces....weight...she does not announce the number....obviously in a momentary fit of tact....BP..126/54 is very good she says....we now do ECG and take some blood she says pointing to yet another door....you go wait there she dismisses me.
Shelly comes back out 15 mins. later.....good thing....
We then wait for another nurse practitioner.
We get the call and enter yet another door....we sit down....aforesaid nurse practitioner then proceeds to ask us the same questions that we spent mucho minutes filling out in the previously mentioned questionnaire. She has to enter it into the medical records system....
Many minutes go by....she then does some cursory examination of Shelly's heart and breathing with a stethescope...and pronounces her ready for surgery.
She informs us that we should show up for surgery at 3 p.m. on Tuesday....huh?....Dr. Starr's scheduling office had told us that we should show up on Tue at 10 a.m. She calls Dr. Starr's office....gets vm...leaves message to call us. She suggest...nicely...that it might be best for us to confirm the time with Dr. Starr's office directly.....great....
It is now almost noon.....we leave Shelly and Ratika at the UCSF food court across the street and Akshay and I head for Dr. Starr's office.....where we're informed that 1000 is probably a good time to show up on Tue...there still seemed to be some question as to the exact time....we leave a little puzzled....and rejoin Shelly and Ratika at the food court...UCSF food court isn't exactly the gourmet destination of the world....but what the heck...you make do with what you can get....pizza and Dr. Pepper....with nachos to round it out...
It's 1240 by now.....MRI is scheduled for 1300 in another building.....Shelly's next med dose is at 1300, so the meds have essentially worn off....she's freezing and finding it hard to move....complicated by the 100s of folks in the food court...she's conscious....causing even more freezing....we decide to go get the wheelchair again....Akshay runs across the street and brings one......we head down to the imaging lab.
You guessed it...we have to check in and register again.....the dreaded clip board with the questionnaire and consent form stares at you....it's multi-sided and multiple sheets.....it's the same information
AAAAAAAAAAAARRRRRRGGGGGGHHHHHH @#%@#
Finally we're checked in and it's time for the MRI....fortunately Dr. Starr's nurse shows up.....she actually knows a few things...I take this opportunity to ask about the surgery schedule....you need to be there at 0800 she says.....
AAAAAAAAAAARRRRRRRGGGGGHHHHHHHHHHH #%$@&$^!*%#^$@
MRI is done.....we got a good set of images she says....phew!....I couldn't possibly fill out another questionnaire...
We take her word for the surgery schedule....the only other person to ask would be Dr. Starr himself....
We get back to the car in the parking garage....Shelly is quite tired by now....we bundle her in and set out for "home"....it starts to sleet mildly as we leave....very symmetric day you know....as we near home the weather actually clears.....the sun appears.....we see the Pacific ocean....it looks beautiful....we pull into Rockaway beach and take a couple of pictures with the kids....it feels good.....it's going to be a good day tomorrow....
So we're off again tomorrow morning....need to leave home at 0700....so much for sleeping in....
Well gang....time to go wake up Shelly for her last dose of meds for the day.....and catch a few winks myself...
peace....easy.....
Sunday, December 14, 2008
The problem that is being fixed...
With Shelly's permission I'm including a view of the x-ray that shows the break in her lead that will be fixed with the surgery on Tuesday. While I wish Shelly never needed any of this and that we weren't back here getting it fixed yet again....I still find it very exciting that Shelly and people with her need have access to solutions that can improve the quality of their lives....
The four tiny black squares in a row are connectors that connect the lead from the brain to the stimulator in the chest.
The four tiny black squares in a row are connectors that connect the lead from the brain to the stimulator in the chest.
Update 12/14/08....1819 hrs...
Shelly had a good rest last night. She pretty much slept through till 6 a.m., took her meds and then slept again for another hour or so. Good job Shells....the cool part is that I got to sleep through too.
We've been hanging out with our nephew in Pacifica CA....it's a beautiful location.....and visited with other long standing friends from our years in Austin. Shelly's "surges" have also been very infrequent so far today....wooohoooo!
Stating the obvious here.....but thank the Lord for real friends....
Pre-op MRI tomorrow morning at 0930.
Later gang........
We've been hanging out with our nephew in Pacifica CA....it's a beautiful location.....and visited with other long standing friends from our years in Austin. Shelly's "surges" have also been very infrequent so far today....wooohoooo!
Stating the obvious here.....but thank the Lord for real friends....
Pre-op MRI tomorrow morning at 0930.
Later gang........
Saturday, December 13, 2008
Deja vu....all over again...
A couple of nights ago...2:45 a.m...
I'm so worried...I don't know what's going to happen...Shelly half mumbles in her fitful sleep midst the rhythmic hissing of the CPAP machine that she uses every night for her sleep apnea.
It'll be fine Shells....I mumble back....we'll just take it one step at a time...the kids and I will be with you as always...try to relax and get some sleep....easy for me to say....I'm not the one who's going to have someone drill into my brain yet again...and then wake me up in the middle of it to see how I'm doing....but I'm getting ahead of myself...let me catch you up a bit..
If you're reading this blog you most likely already know that Shelly had DBS surgery back in December of 2005 and then had to go back in in September of 2007 to have a faulty wire replaced along with a new stimulator. Other than a severe episode of sciatica in Dec. of 2007, it's been a pretty good run in 2008. Shelly's has been active as ever and making life difficult for me...which is always a good sign that she's doing well :). A couple of months ago her episodes of "freezing" started to increase and she's been going back and forth to her local neuro (at the Booth Gardner Parkinson's center) to get her medication adjusted....with variable results. Then about a couple of weeks she started mentioning a new symptom....an unpredictable "surge" that she felt all along the left side of her body that lasted for a few seconds and would cause the fingers in her left hand to become very rigid....it would happen once or twice a day...then started happening with a little more frequency...maybe five times a day....I can't explain it...it's a very strange feeling....you could see the distress it created when the surge occurred...she's hold her head with her right hand...eye's shut tightly....left hand stretched and rigid....waiting for the surge to pass....the surges occurred randomly during the day...
It was scary to watch her experience it....if you didn't know she'd had DBS it might even freak an observer out even more....one could only imagine what she was feeling. I knew something was not right here....this was not just a symptom of the progression of her Parkinson's....couldn't be....but what was it? Then last Monday (Dec. 8th) we had an appointment with her neurologist and her "programmer" to review her medication and symptoms. Sierra (her programmer) was doing a routine test of her stimulator when I mentioned this new "surge" symptom. Sierra had been noticing some weird impedance measurements along with the fact that she couldn't get consistent measurements. While she was doing this Shelly had another "surge" episode. The variability of the measurements caused Sierra to recommend that Shelly have a series of x-rays done "stat" to see if there were any issues with the stimulator and wiring. We went immediately to Evergreen hospital to get the xrays done. Sierra called that evening around 5:30 p.m. to tell us that she was pretty sure that one of the leads to the brain...the one on the right side of the brain...was most likely broken. She sent us a copy of the xrays and one could clearly see where the wire had broken. Sierra immediately called Dr. Starr at UCSF and left him a message along with the xrays. The verdict was in the next morning when Dr. Starr emailed me back to say that the right brain lead extender was fractured and would have to be fixed immediately. While the "fractured" part of the lead was outside the brain, the lead would have to be replaced in its entirety...i.e. Shelly needed to have half the original surgery of 2005 repeated. I was originally hoping that somehow the lead could be spliced outside the brain....but it is not to be.
But at least now there was something that could...or seemed to...explain the surge. The left side of the body is controlled by the right brain lead....so it made sense that a broken right lead could have unpredictable effects on the left body. I'm really pained that Shelly has to go through this again....God knows she's gone through a lot and goes through a lot every day....but at least there's a good reason for it....which brings me back to today....
We....Shelly, the kids and I....came to San Francisco a few hours ago today. Surgery is scheduled for Tue around 10 a.m. with pre-op testing scheduled for Monday morning at 0930 hrs. The surgery is expected to take 3-4 hours with overnight hospitalization. If all goes well I expect Shelly will be discharged sometime on Wed afternoon and then she recuperates for a few days before we head back to Seattle on Sat or Sun of next week. I think Shelly is really fortunate to have a very good surgeon and to get such an early slot to have the surgery done....the discomfort and anxiety from the situation would have been much worse had she been made to wait several weeks to get a slot.
Yes Shelly has been through this before....I've been through this with her....so have the kids...and so have many of you who have and still provide her with support and comfort well beyond anything that I can.....but it's still brain surgery....it's scary...it's even scarier if you're Shelly....if you're Shelly you're just fed up with this....I feel her pain.....there is so little I can do directly to assuage her fears and frustration....but she's ever so strong in her own way and derives so much strength from her family and friends. So thanks for reading.....and caring....and helping....this would be much harder without you....
Think I'll hit the sack now.....sleep beckons.....Shelly is resting....I wish her a restful and anxiety-free night...
I'll keep you updated over the next several days...
peace....easy....
I'm so worried...I don't know what's going to happen...Shelly half mumbles in her fitful sleep midst the rhythmic hissing of the CPAP machine that she uses every night for her sleep apnea.
It'll be fine Shells....I mumble back....we'll just take it one step at a time...the kids and I will be with you as always...try to relax and get some sleep....easy for me to say....I'm not the one who's going to have someone drill into my brain yet again...and then wake me up in the middle of it to see how I'm doing....but I'm getting ahead of myself...let me catch you up a bit..
If you're reading this blog you most likely already know that Shelly had DBS surgery back in December of 2005 and then had to go back in in September of 2007 to have a faulty wire replaced along with a new stimulator. Other than a severe episode of sciatica in Dec. of 2007, it's been a pretty good run in 2008. Shelly's has been active as ever and making life difficult for me...which is always a good sign that she's doing well :). A couple of months ago her episodes of "freezing" started to increase and she's been going back and forth to her local neuro (at the Booth Gardner Parkinson's center) to get her medication adjusted....with variable results. Then about a couple of weeks she started mentioning a new symptom....an unpredictable "surge" that she felt all along the left side of her body that lasted for a few seconds and would cause the fingers in her left hand to become very rigid....it would happen once or twice a day...then started happening with a little more frequency...maybe five times a day....I can't explain it...it's a very strange feeling....you could see the distress it created when the surge occurred...she's hold her head with her right hand...eye's shut tightly....left hand stretched and rigid....waiting for the surge to pass....the surges occurred randomly during the day...
It was scary to watch her experience it....if you didn't know she'd had DBS it might even freak an observer out even more....one could only imagine what she was feeling. I knew something was not right here....this was not just a symptom of the progression of her Parkinson's....couldn't be....but what was it? Then last Monday (Dec. 8th) we had an appointment with her neurologist and her "programmer" to review her medication and symptoms. Sierra (her programmer) was doing a routine test of her stimulator when I mentioned this new "surge" symptom. Sierra had been noticing some weird impedance measurements along with the fact that she couldn't get consistent measurements. While she was doing this Shelly had another "surge" episode. The variability of the measurements caused Sierra to recommend that Shelly have a series of x-rays done "stat" to see if there were any issues with the stimulator and wiring. We went immediately to Evergreen hospital to get the xrays done. Sierra called that evening around 5:30 p.m. to tell us that she was pretty sure that one of the leads to the brain...the one on the right side of the brain...was most likely broken. She sent us a copy of the xrays and one could clearly see where the wire had broken. Sierra immediately called Dr. Starr at UCSF and left him a message along with the xrays. The verdict was in the next morning when Dr. Starr emailed me back to say that the right brain lead extender was fractured and would have to be fixed immediately. While the "fractured" part of the lead was outside the brain, the lead would have to be replaced in its entirety...i.e. Shelly needed to have half the original surgery of 2005 repeated. I was originally hoping that somehow the lead could be spliced outside the brain....but it is not to be.
But at least now there was something that could...or seemed to...explain the surge. The left side of the body is controlled by the right brain lead....so it made sense that a broken right lead could have unpredictable effects on the left body. I'm really pained that Shelly has to go through this again....God knows she's gone through a lot and goes through a lot every day....but at least there's a good reason for it....which brings me back to today....
We....Shelly, the kids and I....came to San Francisco a few hours ago today. Surgery is scheduled for Tue around 10 a.m. with pre-op testing scheduled for Monday morning at 0930 hrs. The surgery is expected to take 3-4 hours with overnight hospitalization. If all goes well I expect Shelly will be discharged sometime on Wed afternoon and then she recuperates for a few days before we head back to Seattle on Sat or Sun of next week. I think Shelly is really fortunate to have a very good surgeon and to get such an early slot to have the surgery done....the discomfort and anxiety from the situation would have been much worse had she been made to wait several weeks to get a slot.
Yes Shelly has been through this before....I've been through this with her....so have the kids...and so have many of you who have and still provide her with support and comfort well beyond anything that I can.....but it's still brain surgery....it's scary...it's even scarier if you're Shelly....if you're Shelly you're just fed up with this....I feel her pain.....there is so little I can do directly to assuage her fears and frustration....but she's ever so strong in her own way and derives so much strength from her family and friends. So thanks for reading.....and caring....and helping....this would be much harder without you....
Think I'll hit the sack now.....sleep beckons.....Shelly is resting....I wish her a restful and anxiety-free night...
I'll keep you updated over the next several days...
peace....easy....
Saturday, September 29, 2007
A week after the ER visit...
Things are looking up....
Shelly had her programming session last Monday. Like previous visits it was quite exhausting....she was in there for 4+ hours.....but unlike previous visits Shelly wasn't tense, and that really helps get a better read of what's working and what isn't.
It's pretty clear the new stimulator and the new wiring are a good thing. The impedances are all good....we can now use electrode 6....and the signal strengths are better.....she seems to be getting the same levels of stimulation at lower voltages. Good to know that the surgery was worth the trip and the effort. The programming visit did not immediately fix the severe left leg pain from dystonia. Dr. Giroux decided to give Shelly another round of botox at a higher dosage level. She also prescribed an anti-spasmodic.
Shelly has definitely shown improvement over the last 5 days. Her tremors are doing well. The freezing is better too....not gone but definitely better. Dyskinesia is a little higher during some parts of the day, but that's also a sign that the stimulation is more effective. We've reduced the Sinemet a tad to see if that helps. The leg pain is still bad but more manageable. It tends to be more during the mornings and better during the day. Shelly has found that if she gets up early and stays mobile then it seems to control the pain better. She's very determined to do what's required to make this better....good for her. She's stayed very active this week.....been running around town doing a lot of work for Utsav 2007.
Last Saturday's events seem like a long long time ago....almost surreal.....a good thing....
p.s. we do have to get to the bottom of what caused last Saturday's issues. Shelly will have an EEG done....schedule unknown....for some strange reason it seems like a really hard thing to schedule..
later people.....peace.......easy...
Shelly had her programming session last Monday. Like previous visits it was quite exhausting....she was in there for 4+ hours.....but unlike previous visits Shelly wasn't tense, and that really helps get a better read of what's working and what isn't.
It's pretty clear the new stimulator and the new wiring are a good thing. The impedances are all good....we can now use electrode 6....and the signal strengths are better.....she seems to be getting the same levels of stimulation at lower voltages. Good to know that the surgery was worth the trip and the effort. The programming visit did not immediately fix the severe left leg pain from dystonia. Dr. Giroux decided to give Shelly another round of botox at a higher dosage level. She also prescribed an anti-spasmodic.
Shelly has definitely shown improvement over the last 5 days. Her tremors are doing well. The freezing is better too....not gone but definitely better. Dyskinesia is a little higher during some parts of the day, but that's also a sign that the stimulation is more effective. We've reduced the Sinemet a tad to see if that helps. The leg pain is still bad but more manageable. It tends to be more during the mornings and better during the day. Shelly has found that if she gets up early and stays mobile then it seems to control the pain better. She's very determined to do what's required to make this better....good for her. She's stayed very active this week.....been running around town doing a lot of work for Utsav 2007.
Last Saturday's events seem like a long long time ago....almost surreal.....a good thing....
p.s. we do have to get to the bottom of what caused last Saturday's issues. Shelly will have an EEG done....schedule unknown....for some strange reason it seems like a really hard thing to schedule..
later people.....peace.......easy...
Saturday, September 22, 2007
We had all kinds of excitement this morning...
It's about 6 a.m. this morning....I wake up hearing Shelly tossing and turning a bit, obviously quite restless. She mumbles "my leg's hurting" and then "why am I feeling this way....I feel tingly all over...". As I sit up and turn around to look at her she rolls onto her back with her eyes closed, arms splayed a bit to the side and tremoring pretty badly.
Shelly, what's going on.....no response....I tap her cheeks while calling her name..Shelly...yooohoooo....no response. I'm more alert now and only a touch concerned. Over the past few years I've seen a couple of episodes where Shelly would "go away" for 15-30s. I've been able to "wake" her up by some vigorous shaking or by splashing her face with some water. Normally that would snap her out of it. Neither approach paid any dividends this time.
I'm not prone to panic...but it's been about 5 mins. now and I'm beginning to think to myself "there's a problem here". I turn off her stimulator to see if that would help...no change. I run down the stairs to wake up Ratika who is visiting with us today. I run into Shelly's dad who is getting ready to take Duchess for her morning walk. I ask him to come up...I run back up and called 911.
I'm talking to the 911 operator while at the same time trying to get Shelly to snap out of it.....quite a challenge. The operator is asking me all these mundane questions
What is your last name?
How do you spell that?...grrrrr....I'm thinking I should change my name to something short like Ng....
Shelly....Shells.....can you hear me?.....
Has she had this before?
Shelly....wake up sweetie...
What is your address?......don't you already know this?....I'm calling on a land line for cryin' out loud....
Is she breathing?.....is her chest moving up and down?
Does she have any medical conditions?.....yes...Parkinson's....she's had DBS....what is that?....well I could refer you to a blog to find out more....is anybody on the way???....she assures me someone will be there shortly...
It feels like eternity but it's probably only 10-15 mins since this started.....Shelly's dad is also sitting by her side...you can see the pain in his face....
Shelly makes some kind of sound...her mouth is pulling a bit to one side....many thoughts flash through your mind...I have to force myself to stay focused on figuring out next steps....it's really hard to watch a loved one in this condition...you're pretty much helpless...
The fire department shows up.....there's three of them.....vital signs.....is she having a seizure...no....has she done this before....no....she has an implant in the brain.....what's that for....be careful she has 2 incisions fresh from surgery a few days ago....no no....careful as you reach back behind her head...she's got an incision there....what meds does she take....Sinemet....how do you spell that....geez...Requip....how do you spell that.....Shelly, can you hear me....wake up....what time did this start.....any drug allergies.....no....does she have any emotional issues (he whispers in my ear)....we're going to start an IV....well don't do it in her arm...do it on her hand...she has better luck there....does she drink an alcohol....nope....
The medics show up finally....thank the Lord....I can now have a more meaningful conversation about her condition....ok a somewhat more meaningful one...there are now 5 FD/medic personnel in the bedroom. Meanwhile Shelly's mom comes up and you can just imagine the deep pain she feels as she sees her child on the bed, unresponsive and surrounded by medics. I want to reach out and reassure her....it's difficult....between trying to get Shelly up, responding to questions and making sure the medics don't do something they shouldn't....it's tough...
One of the medics is attaching a monitor to her chest....you know those dollar size circular patches with a button like metallic contact.....she puts one down next to the incision on her chest....then decides she needs to move it....so she peels it off quickly....only a part of it is stuck to the corner of the bandage covering her chest incision and it pulls the edge up.....Shelly cries out in pain and at the same time snaps out of it....
She opens her eyes...only to see 5 or 6 faces peering down at her....she recognizes me, tears well up.....who am I I ask...Raju...she whispers...how many fingers I ask as I hold up 2 finger...she gets it right....I feel my pent up tension ease....the sense of relief in the room in plain....who are all these people....she says...the fear on her face is palpable....what's happening to me....you were "gone" for a bit..I say....do you remember you said that your body was tingling....that was about 20 mins ago....she doesn't believe it...that was just a minute ago...she says...the confusion in her face is plain....what must it feel like to be in her position I wonder...
The medics decide we should take her to ER anyway....he gives her a few cc of Valium to calm her down....she's carried down on a sling and then transferred to a gurney....we head down to Evergreen Hospital ER...it's a fabulous new facility....
what's her name....
how do you spell that....
what's her DOB....
any allergies....
what meds is she on....
any medical conditions other than PD....
what's her pain level.....
vitals..
monitors attached...
.....by now you know the drill....
We stay in ER for a couple of hours....everything seems normal....it's her normal....a very different normal than for you or me......it's funny how "normal" can get redefined....it's all relative.....
We head home.....Shelly's leg pain is absolutely killing her.....but then that's been her "normal" for the last 2-3 months....that battle continues...today's skirmish is coming to a close...
Programming awaits on Monday....let's hope we can find some reasonably effective setting that makes her pain more bearable.....I'm keeping my expectations low....I'm not looking for elimination of pain...."bearable" will be a good start...
It's been a tough 6 months for Shelly....time for a few breaks...
peace....easy....
Shelly, what's going on.....no response....I tap her cheeks while calling her name..Shelly...yooohoooo....no response. I'm more alert now and only a touch concerned. Over the past few years I've seen a couple of episodes where Shelly would "go away" for 15-30s. I've been able to "wake" her up by some vigorous shaking or by splashing her face with some water. Normally that would snap her out of it. Neither approach paid any dividends this time.
I'm not prone to panic...but it's been about 5 mins. now and I'm beginning to think to myself "there's a problem here". I turn off her stimulator to see if that would help...no change. I run down the stairs to wake up Ratika who is visiting with us today. I run into Shelly's dad who is getting ready to take Duchess for her morning walk. I ask him to come up...I run back up and called 911.
I'm talking to the 911 operator while at the same time trying to get Shelly to snap out of it.....quite a challenge. The operator is asking me all these mundane questions
What is your last name?
How do you spell that?...grrrrr....I'm thinking I should change my name to something short like Ng....
Shelly....Shells.....can you hear me?.....
Has she had this before?
Shelly....wake up sweetie...
What is your address?......don't you already know this?....I'm calling on a land line for cryin' out loud....
Is she breathing?.....is her chest moving up and down?
Does she have any medical conditions?.....yes...Parkinson's....she's had DBS....what is that?....well I could refer you to a blog to find out more....is anybody on the way???....she assures me someone will be there shortly...
It feels like eternity but it's probably only 10-15 mins since this started.....Shelly's dad is also sitting by her side...you can see the pain in his face....
Shelly makes some kind of sound...her mouth is pulling a bit to one side....many thoughts flash through your mind...I have to force myself to stay focused on figuring out next steps....it's really hard to watch a loved one in this condition...you're pretty much helpless...
The fire department shows up.....there's three of them.....vital signs.....is she having a seizure...no....has she done this before....no....she has an implant in the brain.....what's that for....be careful she has 2 incisions fresh from surgery a few days ago....no no....careful as you reach back behind her head...she's got an incision there....what meds does she take....Sinemet....how do you spell that....geez...Requip....how do you spell that.....Shelly, can you hear me....wake up....what time did this start.....any drug allergies.....no....does she have any emotional issues (he whispers in my ear)....we're going to start an IV....well don't do it in her arm...do it on her hand...she has better luck there....does she drink an alcohol....nope....
The medics show up finally....thank the Lord....I can now have a more meaningful conversation about her condition....ok a somewhat more meaningful one...there are now 5 FD/medic personnel in the bedroom. Meanwhile Shelly's mom comes up and you can just imagine the deep pain she feels as she sees her child on the bed, unresponsive and surrounded by medics. I want to reach out and reassure her....it's difficult....between trying to get Shelly up, responding to questions and making sure the medics don't do something they shouldn't....it's tough...
One of the medics is attaching a monitor to her chest....you know those dollar size circular patches with a button like metallic contact.....she puts one down next to the incision on her chest....then decides she needs to move it....so she peels it off quickly....only a part of it is stuck to the corner of the bandage covering her chest incision and it pulls the edge up.....Shelly cries out in pain and at the same time snaps out of it....
She opens her eyes...only to see 5 or 6 faces peering down at her....she recognizes me, tears well up.....who am I I ask...Raju...she whispers...how many fingers I ask as I hold up 2 finger...she gets it right....I feel my pent up tension ease....the sense of relief in the room in plain....who are all these people....she says...the fear on her face is palpable....what's happening to me....you were "gone" for a bit..I say....do you remember you said that your body was tingling....that was about 20 mins ago....she doesn't believe it...that was just a minute ago...she says...the confusion in her face is plain....what must it feel like to be in her position I wonder...
The medics decide we should take her to ER anyway....he gives her a few cc of Valium to calm her down....she's carried down on a sling and then transferred to a gurney....we head down to Evergreen Hospital ER...it's a fabulous new facility....
what's her name....
how do you spell that....
what's her DOB....
any allergies....
what meds is she on....
any medical conditions other than PD....
what's her pain level.....
vitals..
monitors attached...
.....by now you know the drill....
We stay in ER for a couple of hours....everything seems normal....it's her normal....a very different normal than for you or me......it's funny how "normal" can get redefined....it's all relative.....
We head home.....Shelly's leg pain is absolutely killing her.....but then that's been her "normal" for the last 2-3 months....that battle continues...today's skirmish is coming to a close...
Programming awaits on Monday....let's hope we can find some reasonably effective setting that makes her pain more bearable.....I'm keeping my expectations low....I'm not looking for elimination of pain...."bearable" will be a good start...
It's been a tough 6 months for Shelly....time for a few breaks...
peace....easy....
Wednesday, September 19, 2007
Note to self
Shelly's dyskinesia was still a little high. Around 5 p.m. I notched down the voltages on both sides by 0.1V. Similarly to yesterday, when I reduced the voltages by 0.1V, the dyskinesia seemed to visibly reduce. So based on the reductions on the 2 days the left brain IPG should be at 3.8V and the right brain IPG at 3.0V.
Back to Seattle tonight....destiny willing
Shelly is doing reasonably well today. Biggest sources of discomfort are the pain in her left calf and pain in the chest and along the neck where the wire was tunneled through from behind the ear to the stimulator in the chest. Overall the leg pain is a bigger pain than the surgery related pain.
Some of you have indicated that you thought that the surgery itself would have fixed the leg pain. The leg pain is a condition called dystonia which can cause relentless muscle spasms and continuous pain. Dystonia is a condition that isn't directly related to Parkinsons but is a condition that is frequently associated with PD patients. DBS surgery is also one of the current treatments for dystonia. So the hardware change that Shelly just went through does not by itself fix the leg pain or anything else. It does however provide the opportunity to use the hardware to the fullest extent and so opens up additional programming options. Hopefully one of these configurations will help reduce the leg pain.
This remains a constant battle....it's all about staying positive and hopeful while managing expectations carefully.
See you guys back in Seattle real soon...
Some of you have indicated that you thought that the surgery itself would have fixed the leg pain. The leg pain is a condition called dystonia which can cause relentless muscle spasms and continuous pain. Dystonia is a condition that isn't directly related to Parkinsons but is a condition that is frequently associated with PD patients. DBS surgery is also one of the current treatments for dystonia. So the hardware change that Shelly just went through does not by itself fix the leg pain or anything else. It does however provide the opportunity to use the hardware to the fullest extent and so opens up additional programming options. Hopefully one of these configurations will help reduce the leg pain.
This remains a constant battle....it's all about staying positive and hopeful while managing expectations carefully.
See you guys back in Seattle real soon...
Tuesday, September 18, 2007
Shelly's 2nd surgery
So catching all of you up a bit...
Since about March of this year Shelly started experiencing some additional difficulties - some increase in tremor, longer "off" periods, pain at the stimulator site in the chest, pain in the left calf muscle as well as just general "instability". We visited Dr. Starr at UCSF in May of this year to have the pain in the stimulator site checked out....that was around May 16th if I remember correctly....he didn't see any specific issues at that time....they re-did some of the programming...moved from a mono-polar setting i.e. one of the electrodes -ve and the case +ve to a bipolar setting i.e. at least one electrode -ve and at least one other electrode +ve. This seemed to fix the pain in the chest area. We came back to Seattle and things seemed to be good for a while but other issues continued. Fast forward a bit....it's now around July and Shelly's previous neurologist (Dr. Monique Giroux) and physician's assistant/programmer Sierra Farris who had gone to Cleveland had now returned to the Booth Gardner Parkinson Center in Kirkland....much to Shelly's and my delight. Sierra very methodically went through programming from scratch and determined after many different settings that 2 of the electrodes (electrodes 4 and 6) in the lead in the right brain appeared to be shorted. What this means is that if electrode 6 is stimulated then it also causes electrode 4 to be also stimulated which can result in un-intended side effects....it essentially takes away the ability to use electrode 6 in a program setting. Additionally shorted electrodes result in increased current drain which results in reduced battery life.....all in all not a good thing.
Dr. Giroux contacted Dr. Starr's office and he determined that this ought to be correct right away. In short order we got a surgical appointment for today Sep. 18, 2007. Now that you're caught up....here's what happened today...
We checked into UCSF Medical Center Moffit hospital at 6:30 a.m. Shelly luckily had had a good night's rest (or mostly good anyway) and was in decent spirits. Getting up really early (4:45 a.m.) and getting ready and driving for 30 mins. is always tough....but then we don't get to choose our surgery schedule. Once we checked in we waited around till 8 a.m. and we were then sent to pre-op. After answering the same set of questions to 10 different people....and then watching the nurse in charge writing down vital signs on a paper towel from the restroom....did nothing but aggravate me a bit...but Shelly remained blissfully unaware of any of this. The neurologist - Dr. Schrock?...came by to record the pre-op settings of the stimulator. She took notes of the settings on one side of the brain and then stopped. It was only after I asked her about electrodes 4 and 6 that she remembered that she needed to do that....I suppose people do forget stuff...but the main neurologist??....forgetting to check the impedances on the side of the brain that had the short??....the main reason we were here??.....definitely annoying.....and a reminder that you really have to stay on top of this stuff and ask questions....even if the doctors find it annoying....one just can't assume that the doctors or the nurses don't forget stuff or don't make mistakes. Before I could get too worked up though, Dr. Starr came by and explained what he was going to do.....OK fine I'll let you in on it....
If you didn't catch this previous post...here's a quick recap of the components of DBS. Two leads with 4 electrodes each are implanted in the brain. The leads include a stretch of wire that runs under the scalp to a connector just behind the ear. A lead extender runs from the connector behind the ear to a stimulator that is implanted in the chest. In today's surgery Dr. Starr would be replacing the lead extender for the right brain lead....this to correct the electrode short.....and the stimulator itself....this to address a problem where the stimulator would show a lot of random "activations" i.e. the stim turning itself on and off or thinking it was anyway.
So back to the pre-op....after Dr. Starr left the anesthesiologist came by to do his spiel...the nurse put in an IV....on the second try....Shelly always has issues with getting an IV started....and then they gave her 2 cc of that magical drug Versed which is a benzodiazepine derivative which has powerful anxiolytic, amnestic, hypnotic, anticonvulsant, skeletal muscle relaxant and sedative properties - in short it can put you in a conscious la la land state in 15 seconds flat.....really....it's amazing to watch. The time was 9:41 a.m. and she was off to OR.
At 11:00 a.m. she was done. Dr. Starr came down about 11:20 a.m. and talked to us about the surgery and said all went really well....no issues. He's got this great style....calm...informative....takes time to talk to you....very reassuring....we can all learn from him....when he saw I was sitting on a chair he told me not to get up and then got down on one knee and gave us his update....that was impressive....for a moment I was confused and thought he was about to propose....
About an hour later I got to go see Shelly in the recovery room...PACU it's called...she was a bit groggy but no worse for the wear. I fed her apple juice and Graham's honey crackers...which she scarfed down...poor thing hadn't eaten anything since 8:30 p.m. the previous night. About 2:30ish she felt good enough to get up, get dressed....a bit woozy but ok....and then we were off to our hotel.
So it's 6:56 p.m. now.....Shelly's been doing OK. She has quite a bit of pain in her chest, neck and behind the ear...understandable. She also was having quite a bit of dyskinesia and I figured it might be that she was getting overstimulated now that the system was working like it should be. I dropped the voltages on both sides of the brain by 0.1V to see what would happen....and whaddya know...the dyskinesia subsided dramatically...maybe a fluke or coincidence...but a good thing anyway.
So Shelly is lying in bed....phone in hand....calling away....hey...what else do you expect. If she continues to improve and feel good we might be back in Seattle tomorrow night....Alaska Airlines permitting.
Many thanks to all of you that called before, during and after to say you were thinking of her and to find out how she was doing. We're truly blessed to have family and friends like you. A special thanks to Shakku and Ram for extending their stay in SFO and keeping me company at the hospital all day today....it made the day that much easier.
More later...peace...easy....
Since about March of this year Shelly started experiencing some additional difficulties - some increase in tremor, longer "off" periods, pain at the stimulator site in the chest, pain in the left calf muscle as well as just general "instability". We visited Dr. Starr at UCSF in May of this year to have the pain in the stimulator site checked out....that was around May 16th if I remember correctly....he didn't see any specific issues at that time....they re-did some of the programming...moved from a mono-polar setting i.e. one of the electrodes -ve and the case +ve to a bipolar setting i.e. at least one electrode -ve and at least one other electrode +ve. This seemed to fix the pain in the chest area. We came back to Seattle and things seemed to be good for a while but other issues continued. Fast forward a bit....it's now around July and Shelly's previous neurologist (Dr. Monique Giroux) and physician's assistant/programmer Sierra Farris who had gone to Cleveland had now returned to the Booth Gardner Parkinson Center in Kirkland....much to Shelly's and my delight. Sierra very methodically went through programming from scratch and determined after many different settings that 2 of the electrodes (electrodes 4 and 6) in the lead in the right brain appeared to be shorted. What this means is that if electrode 6 is stimulated then it also causes electrode 4 to be also stimulated which can result in un-intended side effects....it essentially takes away the ability to use electrode 6 in a program setting. Additionally shorted electrodes result in increased current drain which results in reduced battery life.....all in all not a good thing.
Dr. Giroux contacted Dr. Starr's office and he determined that this ought to be correct right away. In short order we got a surgical appointment for today Sep. 18, 2007. Now that you're caught up....here's what happened today...
We checked into UCSF Medical Center Moffit hospital at 6:30 a.m. Shelly luckily had had a good night's rest (or mostly good anyway) and was in decent spirits. Getting up really early (4:45 a.m.) and getting ready and driving for 30 mins. is always tough....but then we don't get to choose our surgery schedule. Once we checked in we waited around till 8 a.m. and we were then sent to pre-op. After answering the same set of questions to 10 different people....and then watching the nurse in charge writing down vital signs on a paper towel from the restroom....did nothing but aggravate me a bit...but Shelly remained blissfully unaware of any of this. The neurologist - Dr. Schrock?...came by to record the pre-op settings of the stimulator. She took notes of the settings on one side of the brain and then stopped. It was only after I asked her about electrodes 4 and 6 that she remembered that she needed to do that....I suppose people do forget stuff...but the main neurologist??....forgetting to check the impedances on the side of the brain that had the short??....the main reason we were here??.....definitely annoying.....and a reminder that you really have to stay on top of this stuff and ask questions....even if the doctors find it annoying....one just can't assume that the doctors or the nurses don't forget stuff or don't make mistakes. Before I could get too worked up though, Dr. Starr came by and explained what he was going to do.....OK fine I'll let you in on it....
If you didn't catch this previous post...here's a quick recap of the components of DBS. Two leads with 4 electrodes each are implanted in the brain. The leads include a stretch of wire that runs under the scalp to a connector just behind the ear. A lead extender runs from the connector behind the ear to a stimulator that is implanted in the chest. In today's surgery Dr. Starr would be replacing the lead extender for the right brain lead....this to correct the electrode short.....and the stimulator itself....this to address a problem where the stimulator would show a lot of random "activations" i.e. the stim turning itself on and off or thinking it was anyway.
So back to the pre-op....after Dr. Starr left the anesthesiologist came by to do his spiel...the nurse put in an IV....on the second try....Shelly always has issues with getting an IV started....and then they gave her 2 cc of that magical drug Versed which is a benzodiazepine derivative which has powerful anxiolytic, amnestic, hypnotic, anticonvulsant, skeletal muscle relaxant and sedative properties - in short it can put you in a conscious la la land state in 15 seconds flat.....really....it's amazing to watch. The time was 9:41 a.m. and she was off to OR.
At 11:00 a.m. she was done. Dr. Starr came down about 11:20 a.m. and talked to us about the surgery and said all went really well....no issues. He's got this great style....calm...informative....takes time to talk to you....very reassuring....we can all learn from him....when he saw I was sitting on a chair he told me not to get up and then got down on one knee and gave us his update....that was impressive....for a moment I was confused and thought he was about to propose....
About an hour later I got to go see Shelly in the recovery room...PACU it's called...she was a bit groggy but no worse for the wear. I fed her apple juice and Graham's honey crackers...which she scarfed down...poor thing hadn't eaten anything since 8:30 p.m. the previous night. About 2:30ish she felt good enough to get up, get dressed....a bit woozy but ok....and then we were off to our hotel.
So it's 6:56 p.m. now.....Shelly's been doing OK. She has quite a bit of pain in her chest, neck and behind the ear...understandable. She also was having quite a bit of dyskinesia and I figured it might be that she was getting overstimulated now that the system was working like it should be. I dropped the voltages on both sides of the brain by 0.1V to see what would happen....and whaddya know...the dyskinesia subsided dramatically...maybe a fluke or coincidence...but a good thing anyway.
So Shelly is lying in bed....phone in hand....calling away....hey...what else do you expect. If she continues to improve and feel good we might be back in Seattle tomorrow night....Alaska Airlines permitting.
Many thanks to all of you that called before, during and after to say you were thinking of her and to find out how she was doing. We're truly blessed to have family and friends like you. A special thanks to Shakku and Ram for extending their stay in SFO and keeping me company at the hospital all day today....it made the day that much easier.
More later...peace...easy....
Sunday, November 26, 2006
Happy Anniversary Shelly
24 years today....almost a quarter century.....purty amazin' that.....wouldn't trade it for all the money in the world.
Now that I'm 50 I can start to say stuff like "I'm truly blessed"....without feeling weird...know what I mean?
But I am truly blessed. I'm not sure what I did to deserve Shelly "but somewhere in my youth or childhood I must have done something good".....(Julie Andrews for those of you that are wondering where that came from)... She's a wonderful wife, mother and friend and I continue to be amazed by her dedication to giving to the community and to her family and friends....that she does this in the face of her daily battle with PD is truly humbling.
In a few weeks it's going to be a full year since Shelly's DBS surgery. Feels like just yesterday....or does it feel like an eternity?....can't decide which. People still ask "was it worth it?" or "is it helping as much as you thought it would?" and my answer is still "absolutely". Clearly she has days when she wonders the same....a few days ago was one of those days....when she "doesn't want to live like this anymore".....that's the nature of the beast....a beast that can dent ones resolve once in a while....makes her ask "why me?"....but not for long. Shelly's a very strong woman....she's got a laundry list of things to get done....people to help....lives to enrich with her presence and caring.....beasts are best advised to get out of her way.
My heartfelt thank you for taking so good care of me all these years Shelly....I know I owe you a kaash maalai (gold coin necklace)....you can have that anytime.....I don't know how but what I most want to give you is good health....I'll keep working on it.
Love you Shelly.....keep the faith....
peace....easy....
Now that I'm 50 I can start to say stuff like "I'm truly blessed"....without feeling weird...know what I mean?
But I am truly blessed. I'm not sure what I did to deserve Shelly "but somewhere in my youth or childhood I must have done something good".....(Julie Andrews for those of you that are wondering where that came from)... She's a wonderful wife, mother and friend and I continue to be amazed by her dedication to giving to the community and to her family and friends....that she does this in the face of her daily battle with PD is truly humbling.
In a few weeks it's going to be a full year since Shelly's DBS surgery. Feels like just yesterday....or does it feel like an eternity?....can't decide which. People still ask "was it worth it?" or "is it helping as much as you thought it would?" and my answer is still "absolutely". Clearly she has days when she wonders the same....a few days ago was one of those days....when she "doesn't want to live like this anymore".....that's the nature of the beast....a beast that can dent ones resolve once in a while....makes her ask "why me?"....but not for long. Shelly's a very strong woman....she's got a laundry list of things to get done....people to help....lives to enrich with her presence and caring.....beasts are best advised to get out of her way.
My heartfelt thank you for taking so good care of me all these years Shelly....I know I owe you a kaash maalai (gold coin necklace)....you can have that anytime.....I don't know how but what I most want to give you is good health....I'll keep working on it.
Love you Shelly.....keep the faith....
peace....easy....
Wednesday, April 12, 2006
Shelly in Barcelona
'Bout time this thing was updated.....
1000 hours…
It’s a reddish-yellow moment…..she’s lying down in bed…..having some tremors…..a bit restless…..just taken her second dose of the day about 30 mins prior….
“It won’t leave me alone, will it…..stupid thing” she says matter-of-factly. I decide not to confirm or deny.
Then a minute later the medication kicks in….you can see the relaxation course through her whole body as the brain stops sending those rogue movement signals to the arms and legs. “Gosh, it’s amazing how this feels” she adds as her face and her mood visibly lighten up. She’s up and about in an instant…..heading straight for the computer and phone….duh….got a couple of hours to make the world a better place before the cycle repeats…
This is the daily struggle…..it is what it is.
The score card post surgery is still an encouraging one:
Rigidity: Don’t see it anymore
Pain: Negligible
Sweating: None
Dyskinesia: Some. Occasionally gets a little stronger, but overall much reduced from pre-surgery days
Tremors: Reduced. Seems to have become a little more noticeable in the last month.
Medication level: Back to 4 doses a day….this is good…remember that post surgery she had gone to 5 doses.
The last few days, following our return from Europe, have been a bit rough. The medication has been taking longer to settle and wearing off quicker making for longer “off” periods. No real explanation as to why….but that’s the insidious nature of this beast. Shelly has a call into the doctor to talk about it. I think it’s time for another programming session…..it’s been over 2 months since she had the last one. Shelly did very well in Barcelona. We walked all over the place….several miles each day. Walking and exercising in general is something that will do Shelly a lot of good…..if she does it that is….not something she naturally gravitates towards…..we all need to encourage her……so the next time you decide to go out to lunch with her, insist that you take a 2 mile walk before it J…..really……no kidding….
Glad to be back blogging…..more to come….
p..e..
