The hospital is a 24 hour operation that at any time of the day or night, nurses and doctors are coming in poking, prodding, and making new assessments about your progress. This is the scenario that we became accustomed to living with every night. Suddenly, last evening, the neurosurgeon resident decided to take out the spinal tap and monitor Amanda closely to see if the leak was indeed closed.
Late today, and to our surprise, they decided to release her from the hospital. Staying in the hospital bed was only going to cause other problems in the long run. So they decided this was the best diagnosis. We were obviously elated to finally get outta there!
We are taking baby steps. We moved into a temporary home a mile from Stanford Medical Center (just in case something would happen in the next two days) and let her get a breath of fresh air, a new environment and monitor her progress, before we head home to San Francisco.
Her orders are to move very gently, no sudden head movements, or picking up anything that weights over five lbs., i.e do nothing that will endanger the leak from springing again. Just walking seems like a victory for her. And we are talking maybe ten minutes at a time, at a snails space. Her brain is trying to figure out what happened to the other side - and at times causes a great deal of havoc with loud internal sounds, headaches, and nausea when she moves in a certain way or has too much stimuli. This is what will take time, retraining her brain to accomodate the loss on the right side.
I know that her positive spirit is due to each of your kind thoughts and prayers, motivating emails and text messages. After all, we are all Ninjas!
Love, Amanda's Mom, Sharon
Wednesday, October 17, 2007
Tuesday, October 16, 2007
October 16th - Tuesday - Update
Amanda is still in the hospital and her family is with her 24 hours a day. They are still monitoring the brain fluid leak.
The brain fluid leak, a known risk factor from the surgery, is something that happens to one in ten patients. It occurs possibly when the multiple layers of skin are sewn together after they extracted the tumor, or when they patched the hole in her skull, they didn't put enough in there and a leak occured. Whichever of those scenarios happened, the process is to follow the lumbar spinal tap procedure to keep the presssure down from one's own brain fluid and away from the leak so it can heal.
This is imperative so that infection does not set in, and not to go back into surgery to repair the leak.
On the bright side, Amanda has a lot to be thankful for: the entire tumor was removed so she doesn't have to go thru a radiation process and her face function is normal!! Thank you God.
They told us that there would be hills and valleys with respect to the progress of her recovery, we are now in the valley. She is determined to get thru this. Tomorrow is another day! Keep up your good thoughts, and prayers, as I believe this is keeping her strong.
Best wishes,
Sharon Lewis
The brain fluid leak, a known risk factor from the surgery, is something that happens to one in ten patients. It occurs possibly when the multiple layers of skin are sewn together after they extracted the tumor, or when they patched the hole in her skull, they didn't put enough in there and a leak occured. Whichever of those scenarios happened, the process is to follow the lumbar spinal tap procedure to keep the presssure down from one's own brain fluid and away from the leak so it can heal.
This is imperative so that infection does not set in, and not to go back into surgery to repair the leak.
On the bright side, Amanda has a lot to be thankful for: the entire tumor was removed so she doesn't have to go thru a radiation process and her face function is normal!! Thank you God.
They told us that there would be hills and valleys with respect to the progress of her recovery, we are now in the valley. She is determined to get thru this. Tomorrow is another day! Keep up your good thoughts, and prayers, as I believe this is keeping her strong.
Best wishes,
Sharon Lewis
Saturday, October 13, 2007
Cranial Spinal Leak - A Risk Factor
A CSL or Cranial Spinal Leak is one of the risk factors of her type of brain surgery, but with a low percentage of happening. What are the odds that Amanda would develop this problem ?
Today she was relocated to another floor - intensive neurosurgery - where she had a spinal tap performed. This is a procedure that inserts a tube in or near her spinal cord and empties the overflow of fluid from her brain thru this spinal cord into a device hanging off her bed. This was very difficult, as the needle inserted was larger than an epidural needle (those who have had children - know what I am talking about).
She is now confined to complete bed rest for three or more days. She is restricted with bed and head movement- no more than a 30 degree incline. If she wants to move, a nurse must come and remeasure every inch!!
She is determined to get thru this obstacle and get back on track with her recovery. We have decided that Amanda should play the lottery, as her odds in winning should be very good.
Best Regards, Sharon Lewis
P.S. Lets see how much we can stand! My husband's back just went out. He is now on the floor, as this is the only comfortable position.
Today she was relocated to another floor - intensive neurosurgery - where she had a spinal tap performed. This is a procedure that inserts a tube in or near her spinal cord and empties the overflow of fluid from her brain thru this spinal cord into a device hanging off her bed. This was very difficult, as the needle inserted was larger than an epidural needle (those who have had children - know what I am talking about).
She is now confined to complete bed rest for three or more days. She is restricted with bed and head movement- no more than a 30 degree incline. If she wants to move, a nurse must come and remeasure every inch!!
She is determined to get thru this obstacle and get back on track with her recovery. We have decided that Amanda should play the lottery, as her odds in winning should be very good.
Best Regards, Sharon Lewis
P.S. Lets see how much we can stand! My husband's back just went out. He is now on the floor, as this is the only comfortable position.
Hospital Progress
Amanda is steadily making progress in the hospital. As with any extensive surgery, she has had a few bumps in the road. She has developed a slight brain fluid leak (dripping from her nose) - this is something that they have to make sure is stopped before she can leave the hospital, and she has some breathing difficulties with her lower lungs not functioning properly. These are all being tested, monitored and medications applied.
Her pain and vertigo are under control with a super cocktail of drugs. She has stood up and is getting stronger.
They did a great job in saving her hair, only shaving off what was needed, which she was excited to hear about. She has not seen herself, (this has been deliberate,) as she would not really recognize herself, since she is very swollen and bruised.
A few people have asked if she can have visitors. She is not up to having visitors, as she could not carry on a conversation, and gets tired very easily. She also can't read, or look at her iphone yet to respond to the many messages she is receiving. Be patient, she will get back to all of you, in a couple of weeks.
All of your prayers, special messages, and acts of kindness are getting her thru this. As her parents, we are very happy she has such a wonderful support group.
P.S. I forgot to mention that her genuis doctors are amazing--Dr. Robert Jackler, MD - Chairman of the Brain, Neck and Ear Department of Stanford, was assisted by Dr Lawrence Harsch, Head of Neurology ( AND HUSBAND OF MEG WHITMAN, CEO of EBAY).
Tumor could show up on EBAY.............
Warmest Regards,
Sharon Lewis (Amanda's Mom)
Her pain and vertigo are under control with a super cocktail of drugs. She has stood up and is getting stronger.
They did a great job in saving her hair, only shaving off what was needed, which she was excited to hear about. She has not seen herself, (this has been deliberate,) as she would not really recognize herself, since she is very swollen and bruised.
A few people have asked if she can have visitors. She is not up to having visitors, as she could not carry on a conversation, and gets tired very easily. She also can't read, or look at her iphone yet to respond to the many messages she is receiving. Be patient, she will get back to all of you, in a couple of weeks.
All of your prayers, special messages, and acts of kindness are getting her thru this. As her parents, we are very happy she has such a wonderful support group.
P.S. I forgot to mention that her genuis doctors are amazing--Dr. Robert Jackler, MD - Chairman of the Brain, Neck and Ear Department of Stanford, was assisted by Dr Lawrence Harsch, Head of Neurology ( AND HUSBAND OF MEG WHITMAN, CEO of EBAY).
Tumor could show up on EBAY.............
Warmest Regards,
Sharon Lewis (Amanda's Mom)
Thursday, October 11, 2007
Post Surgery Update
Challenge #1 - Get thru Surgery
Amanda went thru 14 hours of surgery yesterday. This was the longest day of our lives. We finally saw her at ten oclock last night in the ICU. Good News is they removed all of the tumor. They preserved the multiple nerves that control her face, eyes, and neck. She did loose her hearing in her right ear as we expected.
Challenge #2 - Post Surgery - ICU
No one is prepared to see their child in the ICU, with the bandages, monitors, needles......it is horrifying. She is very sick from the anesthesia and because her balance nerve has been severed, she has extreme vertigo and pain in her head. They indicate this is the passage that goes with this type of surgery. She will remain in ICU all day today. We can only see her 30 minutes every two hours. She really needs to be a Ninja because it will take everything she's got to get thru this next phase.
Many of you have asked where should you send something. This is a wonderful endearing jesture, but we ask that you save this for later when we can get her home. When she does get a room, it will be shared. Once we get her out of ICU, I will update you.
Warmest regards,
Sharon Lewis, Amanda's mom.
Amanda went thru 14 hours of surgery yesterday. This was the longest day of our lives. We finally saw her at ten oclock last night in the ICU. Good News is they removed all of the tumor. They preserved the multiple nerves that control her face, eyes, and neck. She did loose her hearing in her right ear as we expected.
Challenge #2 - Post Surgery - ICU
No one is prepared to see their child in the ICU, with the bandages, monitors, needles......it is horrifying. She is very sick from the anesthesia and because her balance nerve has been severed, she has extreme vertigo and pain in her head. They indicate this is the passage that goes with this type of surgery. She will remain in ICU all day today. We can only see her 30 minutes every two hours. She really needs to be a Ninja because it will take everything she's got to get thru this next phase.
Many of you have asked where should you send something. This is a wonderful endearing jesture, but we ask that you save this for later when we can get her home. When she does get a room, it will be shared. Once we get her out of ICU, I will update you.
Warmest regards,
Sharon Lewis, Amanda's mom.
Tuesday, October 9, 2007
It's Go Time
It's the night before the big surge. Tomorrow we'll be rising and shining at 5 a.m. and'll Stanford-bound shortly thereafter. It's raining and I kind of wish it wasn't -- but if I've learned anything these past few months, it's that you can't fight mother nature. So be it.
Our pre-op day today was, surprisingly, as long as an average workday. Because my procedure will encompass overlapping departments (Stanford's ENT department, their neurosurgery department and the actual Hospital -- mind you, 3 separate buildings and their staff, all of whom want to separately take your blood pressure and have you fill out forms), it's been a little bit of an undertaking on its own. But it felt good to be in the presence of doctors -- geniuses, these guys I have at Stanford -- and it was amazingly a boost that I needed. In fact, I feel oddly at peace considering what's about to go down tomorrow.
So, regarding recovery news: my mom is gonna take over blogging duties tomorrow (and by the way, how cool is it that my mom is gonna blog?), granted she can get to a computer sometime following the procedure. The job on me won't be completed until around 6 p.m. PST, so I suppose, now that I think about it, it could very well be Thursday that the news gets posted on here.
My mom will also be posting details about what can expected from me/us during my recovery, which unfortunately isn't the most glamorous process in the world. I do know, however, I'll remain at Stanford until at least Sunday.
So, I'm gonna try and get some sleep (despite it being the main activity I can expect to be undertaking over the next few days), though I have one last thing to mention: I just finished listening to a lot of your voicemails and reading your texts and e-mails, and once again, am finding myself in a humbling position of gratitude for having people like you to count on. Thanks so much, as always, and hopefully it won't be long before you'll be hearing from me again.
Lots of love to you all.
Our pre-op day today was, surprisingly, as long as an average workday. Because my procedure will encompass overlapping departments (Stanford's ENT department, their neurosurgery department and the actual Hospital -- mind you, 3 separate buildings and their staff, all of whom want to separately take your blood pressure and have you fill out forms), it's been a little bit of an undertaking on its own. But it felt good to be in the presence of doctors -- geniuses, these guys I have at Stanford -- and it was amazingly a boost that I needed. In fact, I feel oddly at peace considering what's about to go down tomorrow.
So, regarding recovery news: my mom is gonna take over blogging duties tomorrow (and by the way, how cool is it that my mom is gonna blog?), granted she can get to a computer sometime following the procedure. The job on me won't be completed until around 6 p.m. PST, so I suppose, now that I think about it, it could very well be Thursday that the news gets posted on here.
My mom will also be posting details about what can expected from me/us during my recovery, which unfortunately isn't the most glamorous process in the world. I do know, however, I'll remain at Stanford until at least Sunday.
So, I'm gonna try and get some sleep (despite it being the main activity I can expect to be undertaking over the next few days), though I have one last thing to mention: I just finished listening to a lot of your voicemails and reading your texts and e-mails, and once again, am finding myself in a humbling position of gratitude for having people like you to count on. Thanks so much, as always, and hopefully it won't be long before you'll be hearing from me again.
Lots of love to you all.
Surgery = Tomorrow
Today's my pre-op day at Stanford. Admittedly, I spent a good portion of yesterday in a very un-ninja-like mode that I like to refer to as "Oh My Gosh -What's-Happening-Here?!". I'm going to attribute yesterday's general malaise to having had difficulty sleeping the night prior, an unwilling recipient to all sorts of odd dreams and a random sense of dread.
For some reason, though, today is much better. Maybe I just had to get it out of my system. I guess I wouldn't be human if I didn't take moments to freak out every now and then.
Luckily, my awesome parents have been in town, providing a welcome and comforting diversion. We've kept ourselves busy, celebrating their wedding anniversary in Fisherman's Wharf (where they honeymooned years earlier!), watching the slick Blue Angels zoom over the Bay celebrating the end of Fleet Week, and finally, taking advantage of the amazing weather and driving a cute PT Cruiser convertible up to the Marin Headlands where we enjoyed insanely breathtaking views of San Francisco from the top of uninhabited mountains.
Despite the surgery being tomorrow, today feels like a better day. Granted, it's early in the morning, but I'm determined to keep my fear at bay for a little longer. Aside from my parents being here, I've all sorts of distractions: a spontaneous, shorter 'do (at least 5 inches of hair less than I'm accustomed to), a shiny new iPhone (courtesy of my ridiculously cool friends at work), and of course, all the voice mails, texts, and emails from all of you. Granted, I'm unable to respond to them all right now, but rest assured they're coming through and are feeding my ninja strength one word at a time.
I'll be back tonight with some closing thoughts, and will be turning the blog over to Mom after that, where she'll provide post-surgery updates. Until then, enjoy these memorable snapshots from the Marin Headlands:
Me and my most Ninja-est kick
Mom showing me who's boss
Dad's better at crossword puzzles and fixing stuff
For some reason, though, today is much better. Maybe I just had to get it out of my system. I guess I wouldn't be human if I didn't take moments to freak out every now and then.
Luckily, my awesome parents have been in town, providing a welcome and comforting diversion. We've kept ourselves busy, celebrating their wedding anniversary in Fisherman's Wharf (where they honeymooned years earlier!), watching the slick Blue Angels zoom over the Bay celebrating the end of Fleet Week, and finally, taking advantage of the amazing weather and driving a cute PT Cruiser convertible up to the Marin Headlands where we enjoyed insanely breathtaking views of San Francisco from the top of uninhabited mountains.
Despite the surgery being tomorrow, today feels like a better day. Granted, it's early in the morning, but I'm determined to keep my fear at bay for a little longer. Aside from my parents being here, I've all sorts of distractions: a spontaneous, shorter 'do (at least 5 inches of hair less than I'm accustomed to), a shiny new iPhone (courtesy of my ridiculously cool friends at work), and of course, all the voice mails, texts, and emails from all of you. Granted, I'm unable to respond to them all right now, but rest assured they're coming through and are feeding my ninja strength one word at a time.
I'll be back tonight with some closing thoughts, and will be turning the blog over to Mom after that, where she'll provide post-surgery updates. Until then, enjoy these memorable snapshots from the Marin Headlands:
Me and my most Ninja-est kick
Mom showing me who's boss
Dad's better at crossword puzzles and fixing stuff
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