We just got back from the follow-up appointment...roughly 10 hours of driving for around one hour of doctor time. Good thing we like our doctors! Nothing earth shattering in terms of news, but good report on how the scar looks and Adam's general recovery from the surgery. We met with Dr. Hernandez (the neurologist specializing in epilepsy), Dr. Donohue (the neurosurgeon who performed both surgeries in November), and as a bonus--we also saw Dr. Marks (the neurologist specializing in movement disorders). The last one was a last minute surprise, as he was available to visit with us for a few minutes as we had questions about the next phase in Adam's treatment.
So...here is what we learned today from our various doctors:
1. Adam won't be changing medications right away...we had mistakenly thought that he might be able to cut back on some medications after the surgery, but when asked that question today, were told that Adam would have to be seizure free for two years before they would consider that. Oh. Well. That was not what we were hoping to hear...especially since the longest he has ever gone without seizures was three months, and that was several years ago. We are now at around five weeks without a seizure since the surgery, so that is something!
2. Adam will continue to see Dr. Hernandez for epilepsy treatment, but he will now be moving towards treatment for the dystonia with Dr. Marks. If you have been following our saga for a while, you may recall that we were originally referred to Dr. Marks months ago (first visit was in March) to see if Adam would be a candidate for Deep Brain Stimulation (DBS) surgery. Dr. Marks wanted us to work through any possible options for epilepsy surgery first, as that can't be done after the DBS. So, now that we've worked through that process, we are back to dealing with the movement issues.
3. Adam will likely be going in for DBS surgery in either late spring or early summer. It will be a shorter time commitment than our last hospital stay...apparently they generally do the surgery on Wednesday and then send you home on Friday. Part of the scheduling will depend on the healing needed from the first surgery prior to the next surgery. We will keep you posted as we move further on those plans.
So, that catches you up to where we are now!
P.S. We're going to change the settings to try to make it easier for you to add comments to the blog...we've heard that some of you have tried and have not been able to post comments. The new settings will allow anonymous posts, so if you don't sign in, please indicate who you are in your comment so we'll know who you are!
Monday, December 12, 2011
Saturday, November 12, 2011
The Brain Quiz
Here is the Brain Quiz that lots of people have been asking about since its debuet at the Brain/Brian Party. The answers will be posted as a comment this coming Monday for those of you who want some time to try and figure it out.
- True or False: Humans are born with all of the brain cells they will ever have.
- Who wrote the following quote? “All we wanna do is eat your brains. We're not unreasonable, I mean, no one's gonna eat your eyes.”
- EEG is an abbreviation for
A. Electric enhancement graph
B. Electroencephalography
C. Ekky Ekky Goo
D. It’s not an abbreviation. They just misspelled egg. - Which of the following have a character named “brain”?
A. The 2008 movie Igor
B. The 1960s TV series Thunderbirds
C. The 1980s TV series Inspector Gadget
D. All of the above - True or False: Jellyfish have a nervous system.
- Finish the following quote. “Gee Brain; what do you want to do tonight?”
- Toxoplasma gondii is
A. A made up word.
B. A toxin involved in brain cancer
C. A virus that could potentially someday cause a zombie apocalypse.
D. A candy company based in southern Venezuela. - True or False: Mental abilities are separated into the left and right cerebral hemispheres of the brain.
- The brain consumes up to ____ percent of the energy used by the human body, more than any other organ.
- Who is The Brain’s arch-rival?
Tuesday, November 8, 2011
Some thoughts after coming home.
We have been home for a day now. It has taken a little time to be able to write more of a final summary. After having a great appetite, being in good spirits and even getting up out of bed for awhile on Sunday, Adam seemed to run out of steam mid-afternoon. He ended up sleeping for about 16 of the 18 hours from 3 PM Sunday to 9 AM Monday. He also ran a low fever for a little while. He also had a seizure late Sunday evening. That was perhaps the low point of the entire week. It felt like we had gone through all this trauma to still be where we started.
Monday morning, the doctor assured us that it is not unusual for extra seizure activity in the days after surgery. These seizures should not be taken as an indicator one way of the other as to how successful the procedure will ultimately turn out to be. We have seen/heard a variety of different numbers given for the likelihood that the Multiple Subpial Transection procedure will yield a reduction in seizures - 70% (from WebMD), and 50% or 33% from two different doctors here. I know for my own personal coping mechanism, I try not to get my hopes up too high and hopefully I will be pleasantly surprised instead.
So we enter a long wait and see period. They don't want to change more than one variable at a time, so they will keep him on his full meds for now and we will see if he has less seizures. He had only had one seizure in Sept and one in October, so we would need to see no seizures for a good 3 months or so, before we could start to feel like there was a difference.
We have a follow-up appointment with the neurologist and neuro-surgeon in about 1 month. Earlier, when we were in conference with these same two doctors, they made some comments along the lines of never giving up on a patient/and being on board for the long haul. So it feels good to know that a couple of the top doctors in the field are committed to Adam's case. On the last day a different doctor mentioned a technique that is still going through FDA approval trials where a small device is implanted that actually acts like a tiny EEG monitor and when it detects a seizure starting it can perform a pace-maker like pulse to prevent it.
So we forge on ahead. And the ultimate outcome of this first procedure may not even have that much bearing on Adam's prospects as a Deep Brain Stimulation candidate - that is the procedure to address his mobility issues and what we came down to Ft Worth for, originally back in March, anyway. Oddly enough, one effect of this past week is that brain surgery doesn't seem all that scary anymore.
Adam is doing great at home. Again, we can't thank everyone enough for all the love and support that we have felt these past days and weeks. We will keep you posted! Love to you all.
Monday morning, the doctor assured us that it is not unusual for extra seizure activity in the days after surgery. These seizures should not be taken as an indicator one way of the other as to how successful the procedure will ultimately turn out to be. We have seen/heard a variety of different numbers given for the likelihood that the Multiple Subpial Transection procedure will yield a reduction in seizures - 70% (from WebMD), and 50% or 33% from two different doctors here. I know for my own personal coping mechanism, I try not to get my hopes up too high and hopefully I will be pleasantly surprised instead.
So we enter a long wait and see period. They don't want to change more than one variable at a time, so they will keep him on his full meds for now and we will see if he has less seizures. He had only had one seizure in Sept and one in October, so we would need to see no seizures for a good 3 months or so, before we could start to feel like there was a difference.
We have a follow-up appointment with the neurologist and neuro-surgeon in about 1 month. Earlier, when we were in conference with these same two doctors, they made some comments along the lines of never giving up on a patient/and being on board for the long haul. So it feels good to know that a couple of the top doctors in the field are committed to Adam's case. On the last day a different doctor mentioned a technique that is still going through FDA approval trials where a small device is implanted that actually acts like a tiny EEG monitor and when it detects a seizure starting it can perform a pace-maker like pulse to prevent it.
So we forge on ahead. And the ultimate outcome of this first procedure may not even have that much bearing on Adam's prospects as a Deep Brain Stimulation candidate - that is the procedure to address his mobility issues and what we came down to Ft Worth for, originally back in March, anyway. Oddly enough, one effect of this past week is that brain surgery doesn't seem all that scary anymore.
Adam is doing great at home. Again, we can't thank everyone enough for all the love and support that we have felt these past days and weeks. We will keep you posted! Love to you all.
Monday, November 7, 2011
Homeward Bound!
We've checked out of the hospital and are now homeward bound! Looking forward to our own beds and a less structured schedule. We'll post more of a summary soon. For now--a HUGE thank you to all of you for keeping up with us and sending thoughts, prayers, messages, calls...we felt your love and it made all the difference!!!
Sunday, November 6, 2011
Steppin' Out
We've hit a couple of important landmarks today--Adam had his head bandage removed, and was also able to get out of the room on his own power! The first two photos below are a before and after shot of his recent looks...the lovely white turban is no longer, and the impressive looking scar is now visible in all of its glory!
This was actually taken a day ago, when his eye was still a little puffy:
And after the bandage was removed:
Along with the bandage removal, Adam had all of his attachments removed (sensors monitoring heart rate, respiration rate, etc.) so he can now move about a lot easier. We took a walk around the unit with our visitors coming along for company...and of course, Dr. Monkey leading the way! (We apologize that Dr. Monkey hasn't made as much of an appearance during this hospital stay...he has been rather busy with his various responsibilties!)
After a busy morning, we had a little quieter afternoon with rest time for all. The plan is still that Adam will be released on Monday since he is meeting the significant landmarks on his recovery. It will be very nice to be on our own schedule again, sleep in our own beds, and move to the next phase of recovery.
This was actually taken a day ago, when his eye was still a little puffy:
And after the bandage was removed:
Along with the bandage removal, Adam had all of his attachments removed (sensors monitoring heart rate, respiration rate, etc.) so he can now move about a lot easier. We took a walk around the unit with our visitors coming along for company...and of course, Dr. Monkey leading the way! (We apologize that Dr. Monkey hasn't made as much of an appearance during this hospital stay...he has been rather busy with his various responsibilties!)
After a busy morning, we had a little quieter afternoon with rest time for all. The plan is still that Adam will be released on Monday since he is meeting the significant landmarks on his recovery. It will be very nice to be on our own schedule again, sleep in our own beds, and move to the next phase of recovery.
Saturday, November 5, 2011
Visitors
Adam has recovered much faster from the surgery this time. He was awake most of the day and was back to pretty much a full appetite and normal foods. He even put his full weight on his foot on the floor as they moved him from the ICU bed to a wheelchair to move him back to a regular room. He had been laying down or reclining in bed pretty much solid since Tues morning.
We also had some visitors today, which was a great change of pace and much appreciated. Good friends Steve and Pat Poulter had driven down from Wichita last night. As they passed through Norman, Matthew and his friend Caleb joined them. They all arrived after visiting hours last night, but we all congregated at the hospital late this morning and when Adam was moved to a regular room around 1 PM, we hung out much of the rest of the day there. Adam really enjoyed having the company. Then later in the evening we had a Skype call with Aunt Sharon and Uncle Charles to cap off the banner day.
Being the weekend, we haven't seen our main doctors to learn anything new there, but hopefully on Monday. It feels a bit odd to have gone through the surgeries and have them go fine and with no negative side effects, but to still not really have any idea if the whole thing worked or not. Time will tell. At this point we are just glad to be on the 'after' side of this particular adventure.
We also had some visitors today, which was a great change of pace and much appreciated. Good friends Steve and Pat Poulter had driven down from Wichita last night. As they passed through Norman, Matthew and his friend Caleb joined them. They all arrived after visiting hours last night, but we all congregated at the hospital late this morning and when Adam was moved to a regular room around 1 PM, we hung out much of the rest of the day there. Adam really enjoyed having the company. Then later in the evening we had a Skype call with Aunt Sharon and Uncle Charles to cap off the banner day.
Being the weekend, we haven't seen our main doctors to learn anything new there, but hopefully on Monday. It feels a bit odd to have gone through the surgeries and have them go fine and with no negative side effects, but to still not really have any idea if the whole thing worked or not. Time will tell. At this point we are just glad to be on the 'after' side of this particular adventure.
Friday, November 4, 2011
What a Difference a Day Makes
By yesterday evening, we were frustrated. Disheartened. Unsure. If you've been following along, you saw it in our posts. The fact that each Brian and I wrote a post yesterday probably clued you in that there was a lot on our minds, and it wasn't all cheery. But today started with the reality that the surgery was going to happen today...and that in and of itself was an important step towards our eventual goal of returning home once again! Also, we were all in agreement to go ahead with the MST procedure, and whatever happened as a result...well, we would live with that result and move forward from there.
So we headed down to surgery, if not with a cheery excitement, at least with a sense of relief that this was our last trip to surgery for this round. I can't speak for any other surgical department, but here at Cook Children's, they work hard to break any tension in the pre-surgery procedures by interacting joyfully with the patient, and employing humor whenever appropriate. A great fit for Adam as well as for Brian and me! The surgery started earlier and moved more quickly than the other one, and we were being invited to meet up again with Adam by around 1:00 pm in ICU. At this point, he was still rather groggy, but looked fine.
Towards the end of the afternoon, he began to come around more, and agreed to try some ice chips, which led to a popsicle, which led to a pudding cup, which led to ordering soup from the cafeteria, which he topped off with applesauce and another pudding cup! In other words...for the first time all week, he really had an appetite! We also found something on TV that looked interesting, and he ended up smiling, and almost laughing at something silly on the show. Wow! Because of the position of the TV relative to his bed, it encouraged him to open his swollen eye, and over the course of the evening, the swelling really decreased and he was able to open the eye almost to the same extent as the other one!!!
Suddenly worrying about what may or may not have resulted from the surgery seemed to take a back seat to the joy in welcoming back a smiling and hungry version of Adam! I'm sure that there will be more bumps in the road to recovery, but today reminded us that we are going to get to where we need to be.
We also heard that we will likely be released to go home early next week...more on that front as we get to that point. The fact that this is going to be a shorter visit that we originally thought has a lot to do with how quickly Adam went into seizures after the first surgery, allowing the doctors to gain the data needed for decision making within two days. We are very grateful, and look forward to moving home as soon as it is safe and appropriate for Adam to be discharged from the hospital.
We look forward to learning more from the doctors about where we go from here in terms of Adam's treatment and medications, the possibility of investigating Deep Brain Stimulation for dystonia down the road, and what we should be watching for in terms of possible benefits from today's surgery. All in all, a much more positive outcome than we thought possible yesterday at this time.
Thanks again for sticking with us during this adventure--it has really helped to know that we have a great network of incredible people who are supporting us through "the good, the bad, and the ugly" of this grand adventure!
So we headed down to surgery, if not with a cheery excitement, at least with a sense of relief that this was our last trip to surgery for this round. I can't speak for any other surgical department, but here at Cook Children's, they work hard to break any tension in the pre-surgery procedures by interacting joyfully with the patient, and employing humor whenever appropriate. A great fit for Adam as well as for Brian and me! The surgery started earlier and moved more quickly than the other one, and we were being invited to meet up again with Adam by around 1:00 pm in ICU. At this point, he was still rather groggy, but looked fine.
Towards the end of the afternoon, he began to come around more, and agreed to try some ice chips, which led to a popsicle, which led to a pudding cup, which led to ordering soup from the cafeteria, which he topped off with applesauce and another pudding cup! In other words...for the first time all week, he really had an appetite! We also found something on TV that looked interesting, and he ended up smiling, and almost laughing at something silly on the show. Wow! Because of the position of the TV relative to his bed, it encouraged him to open his swollen eye, and over the course of the evening, the swelling really decreased and he was able to open the eye almost to the same extent as the other one!!!
Suddenly worrying about what may or may not have resulted from the surgery seemed to take a back seat to the joy in welcoming back a smiling and hungry version of Adam! I'm sure that there will be more bumps in the road to recovery, but today reminded us that we are going to get to where we need to be.
We also heard that we will likely be released to go home early next week...more on that front as we get to that point. The fact that this is going to be a shorter visit that we originally thought has a lot to do with how quickly Adam went into seizures after the first surgery, allowing the doctors to gain the data needed for decision making within two days. We are very grateful, and look forward to moving home as soon as it is safe and appropriate for Adam to be discharged from the hospital.
We look forward to learning more from the doctors about where we go from here in terms of Adam's treatment and medications, the possibility of investigating Deep Brain Stimulation for dystonia down the road, and what we should be watching for in terms of possible benefits from today's surgery. All in all, a much more positive outcome than we thought possible yesterday at this time.
Thanks again for sticking with us during this adventure--it has really helped to know that we have a great network of incredible people who are supporting us through "the good, the bad, and the ugly" of this grand adventure!
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