The rest of us feel the same way. All we did today was check out, but it still took until about noon to get there. Home by about 6 PM. We are all exhausted. Stay tuned for 'Phase II - Programming Adam' in just under 3 weeks when we see the results.
Friday, March 30, 2012
Back Home.
This is how Adam feels about getting to go home today.
The rest of us feel the same way. All we did today was check out, but it still took until about noon to get there. Home by about 6 PM. We are all exhausted. Stay tuned for 'Phase II - Programming Adam' in just under 3 weeks when we see the results.
The rest of us feel the same way. All we did today was check out, but it still took until about noon to get there. Home by about 6 PM. We are all exhausted. Stay tuned for 'Phase II - Programming Adam' in just under 3 weeks when we see the results.
Thursday, March 29, 2012
Heading Home
Adam has been his old self again today. After sleeping most of yesterday and eating almost nothing, he was up at 5 AM today and ready for breakfast. He has been sitting up and using his kneewalker around the Ward and even down to the Build-A-Bear store. He didn't nap at all today and ate normally, but did turn in early finally at 10 PM. For awhile we thought they might even check us out late today, but we'll stay one more night and are good to go home tomorrow morning.
He still has all his scars and aches, but is ready to move on to the home recuperation phase. He is doing great. Both his neuro-surgeon and the movement specialist neurologist came by for visits. The movement specialist in particular is real happy with the placement of the electrodes as seen in this mornings 'after' MRI.
He still has all his scars and aches, but is ready to move on to the home recuperation phase. He is doing great. Both his neuro-surgeon and the movement specialist neurologist came by for visits. The movement specialist in particular is real happy with the placement of the electrodes as seen in this mornings 'after' MRI.
The Day After the Big Day
If you read yesterday's post, you know that we really didn't expect to see any huge dramatic changes today, since the device won't be turned on for a couple more weeks. And...we didn't. Now that might sound like it would be a little disappointing, but it is really OK. What we mainly felt today was relief...relief that the surgery phase was behind us, relief that the surgery was successful in implanting the leads in the target spot in the brain, relief that there were no apparent negative consequences of the surgery, and above all else, relief that Adam felt good enough today to eat, do a few laps around the 4th floor hallways, sit up for much of the afternoon and evening, and just be himself.
Dr. Monkey, Adam, and Rockem Sockem Monkey sharing some well-deserved R & R!
Adam did have a final MRI this morning, and we learned that all looked good with the lead placement and the brain itself. We met with both his neurologist and the neurosurgeon (as well as a host of other medical personnel), and the general consensus was that all had gone very well during surgery, and that Adam's recovery was going tremendously! It was hard to believe that the surgery was only a day ago by looking at Adam sitting up, eating regular meals, and staying awake all day.
While it was hinted that we might be discharged today, the doctors both felt that since we had a five hour drive ahead of us, it would be best to stay one more night, be released in the morning, and have a more comfortable drive home during the day. It wasn't hard to convince us of the logic of that approach.
As I write this post, Adam has already fallen asleep, and Brian and I aren't far behind. We look forward to heading home tomorrow and reacquainting ourselves with our rather regular and mundane schedules. And looking forward to the next phase of this process where the real excitement begins! The possibilities are thrilling!
Dr. Monkey, Adam, and Rockem Sockem Monkey sharing some well-deserved R & R!
Adam did have a final MRI this morning, and we learned that all looked good with the lead placement and the brain itself. We met with both his neurologist and the neurosurgeon (as well as a host of other medical personnel), and the general consensus was that all had gone very well during surgery, and that Adam's recovery was going tremendously! It was hard to believe that the surgery was only a day ago by looking at Adam sitting up, eating regular meals, and staying awake all day.
While it was hinted that we might be discharged today, the doctors both felt that since we had a five hour drive ahead of us, it would be best to stay one more night, be released in the morning, and have a more comfortable drive home during the day. It wasn't hard to convince us of the logic of that approach.
As I write this post, Adam has already fallen asleep, and Brian and I aren't far behind. We look forward to heading home tomorrow and reacquainting ourselves with our rather regular and mundane schedules. And looking forward to the next phase of this process where the real excitement begins! The possibilities are thrilling!
Wednesday, March 28, 2012
The Big Day
Today was the actual surgery day! We start 'dark' and early by getting up at 4 AM. Adam showers and then they gave us a special anti-septic cloth to wipe down his head and neck with afterwards. Reducing the risk of infection is a big theme for today. We take the 5 minute walk over to the hospital entering through the emergency room as that is the only public access at that time of day. We end up waiting in the wrong area for 30 minutes or so, but by 5:30 AM we are found and the preparations truly begin. They ask questions, take vitals, and start an IV connection in his hand. From 6 - 7, he is getting a heavy duty antibiotic through the IV. By this point he can kill bacteria from across the room just by looking at them! We see a variety of people and finally about 7:30 AM we are separated and the parents go off to do about 7 hrs of hard time in the waiting room and Adam goes off to surgery.
Those not into medical details might want to skip down a paragraph or two, but for the curious... This surgery is easier in some ways but also more complex in some ways, than Adam's November surgery. The hole in the skull will be much smaller (the size of a nickel) this time. But he needs to be awake for parts of this surgery, whereas he was under the entire time last time. They want very precise location control for the instruments, so the first thing they do is attach a wire frame thing around his head. They make four tiny incisions in the scalp and screw the frame into the skull. Adam is out for the bulk of this, but again he isn't put deep under for this procedure. They use a couple kinds of topical pain killers on the scalp, but once you are down to the skull and the brain itself there is no longer any pain sensation - paradoxically enough.
After the frame is in place, they do a quick MRI. I know they did one yesterday and they will do another tomorrow. If you have never had an MRI, I suppose it sounds like a big deal, but in this environment it is like having your temperature taken. Then they cut the small bore hole into the skull. Next comes the placement of the electrodes. This is the part where they need Adam to be awake. Awake is perhaps not the exact image to have; he was on Versed as well the whole time which is a little like laughing gas - puts you in a bit of a la la land. You still know what is going on and can help out when needed, but you do have some strong chemicals on your side. When the doctors came out afterwards they told us that he was very calm and did a great job through-out. His sense of humor surprised them (he's pretty quiet when you first meet him anyway - so they weren't prepared). The one comment we heard about that really tickled everyone was that he said having the hole bored into the skull (he was awake off and on for parts of that I guess) was like 'pushing his face into a massage chair'.
For the electrode placement they insert the thin wire/harness assembly thing deep into the brain. The usual brain region target for Dystonia is called the GPI. For kids with generalized Dystonia (that gradually effects the whole body) these structures often look normal and they insert a separate set of electrodes into the GPI on both sides of the brain. If you look up much on DBS (Deep Brain Stimulation) you'll find that the really dramatic, almost miracle response cases are these generalized Dystonia's that are probably genetic and the MRI's don't show any damage. Adam has what they call 'secondary' Dystonia, meaning that the Dystonia seems to be an effect of some other damage. In Adam's case, the GPI on one side looks normal but the other is damaged and much reduced in size. They have been using DBS for secondary Dystonia's for a shorter period of time and the results are not typically as dramatic. So for Adam they were trying to put the electrodes in just the damaged GPI. They did three 'passes' or position trials, which is a typical number. The first one gave no real response signal, the second one gave a pretty good signal and the third was worse again so they went back to the second location. To test the locations they activate the leads a little - they send in some sort of a signal. They want to see if they are affecting the things they want to affect. Again, you can see videos online where even at this point you get dramatic relaxation of a Dystonic posture, but that is more likely with generalized Dystonia and even then that is not necessarily to be expected nor what they are really looking for at this point. They want to see some movement in the areas they want to effect and they did. Dr Marks took a little video and they were having Adam wiggle his left foot a little in a way that we typically don't see. His hand seemed to be looser as well. Nothing hugely dramatic, but again they were not expecting that. The fact that there was some response tells them they are in the right place and it is the later programming and fine tuning where one hopes to really magnify these effects. The other important part on this electrode placement test is to make sure no other side effects are occurring. Sometimes when they activate the electrodes it can induce new spasticity or slurred speech and so on. In a nutshell the placement goal is to see some effects to the areas you want to change and nothing new that's bad. So on that score at least - mission accomplished!
After all that, they put him back under again to finish up. They have to run/thread/tunnel small wire leads across the skull, down the neck and into the small pace-maker like unit that is embedded under the skin on his chest.
About 2 PM we were finally reunited with Adam. He was in good spirits. It is now the evening. He has been resting a lot and dozing off and on. He's had a couple Popsicle's and some Gatorade. The signs are certainly there that the recovery will be quicker from this surgery than the one November. For one thing, we are not trying to blast him with seizures next - he can focus completely on getting better. He certainly has got some aches and pains. He has bandages over the four incisions on his head where the frame was screwed in, plus a bigger scar on his head where the leads were inserted and about a three inch or so scar on his chest were the little control unit was placed (about the size of a small slim flip phone). So even though everything went off without a hitch and the doctors were quite pleased with everything it has still been a pretty rough day for all.
We have an appointment already to come back in three weeks for the 'programming'. We leave here without the device actually being turned on yet. They want the patient to recover from the surgery and for the body/brain to settle back down. So while today was certainly a major landmark, the saga will continue for some time to come yet. Thanks to all for your thoughts and love!!
Those not into medical details might want to skip down a paragraph or two, but for the curious... This surgery is easier in some ways but also more complex in some ways, than Adam's November surgery. The hole in the skull will be much smaller (the size of a nickel) this time. But he needs to be awake for parts of this surgery, whereas he was under the entire time last time. They want very precise location control for the instruments, so the first thing they do is attach a wire frame thing around his head. They make four tiny incisions in the scalp and screw the frame into the skull. Adam is out for the bulk of this, but again he isn't put deep under for this procedure. They use a couple kinds of topical pain killers on the scalp, but once you are down to the skull and the brain itself there is no longer any pain sensation - paradoxically enough.
After the frame is in place, they do a quick MRI. I know they did one yesterday and they will do another tomorrow. If you have never had an MRI, I suppose it sounds like a big deal, but in this environment it is like having your temperature taken. Then they cut the small bore hole into the skull. Next comes the placement of the electrodes. This is the part where they need Adam to be awake. Awake is perhaps not the exact image to have; he was on Versed as well the whole time which is a little like laughing gas - puts you in a bit of a la la land. You still know what is going on and can help out when needed, but you do have some strong chemicals on your side. When the doctors came out afterwards they told us that he was very calm and did a great job through-out. His sense of humor surprised them (he's pretty quiet when you first meet him anyway - so they weren't prepared). The one comment we heard about that really tickled everyone was that he said having the hole bored into the skull (he was awake off and on for parts of that I guess) was like 'pushing his face into a massage chair'.
For the electrode placement they insert the thin wire/harness assembly thing deep into the brain. The usual brain region target for Dystonia is called the GPI. For kids with generalized Dystonia (that gradually effects the whole body) these structures often look normal and they insert a separate set of electrodes into the GPI on both sides of the brain. If you look up much on DBS (Deep Brain Stimulation) you'll find that the really dramatic, almost miracle response cases are these generalized Dystonia's that are probably genetic and the MRI's don't show any damage. Adam has what they call 'secondary' Dystonia, meaning that the Dystonia seems to be an effect of some other damage. In Adam's case, the GPI on one side looks normal but the other is damaged and much reduced in size. They have been using DBS for secondary Dystonia's for a shorter period of time and the results are not typically as dramatic. So for Adam they were trying to put the electrodes in just the damaged GPI. They did three 'passes' or position trials, which is a typical number. The first one gave no real response signal, the second one gave a pretty good signal and the third was worse again so they went back to the second location. To test the locations they activate the leads a little - they send in some sort of a signal. They want to see if they are affecting the things they want to affect. Again, you can see videos online where even at this point you get dramatic relaxation of a Dystonic posture, but that is more likely with generalized Dystonia and even then that is not necessarily to be expected nor what they are really looking for at this point. They want to see some movement in the areas they want to effect and they did. Dr Marks took a little video and they were having Adam wiggle his left foot a little in a way that we typically don't see. His hand seemed to be looser as well. Nothing hugely dramatic, but again they were not expecting that. The fact that there was some response tells them they are in the right place and it is the later programming and fine tuning where one hopes to really magnify these effects. The other important part on this electrode placement test is to make sure no other side effects are occurring. Sometimes when they activate the electrodes it can induce new spasticity or slurred speech and so on. In a nutshell the placement goal is to see some effects to the areas you want to change and nothing new that's bad. So on that score at least - mission accomplished!
After all that, they put him back under again to finish up. They have to run/thread/tunnel small wire leads across the skull, down the neck and into the small pace-maker like unit that is embedded under the skin on his chest.
About 2 PM we were finally reunited with Adam. He was in good spirits. It is now the evening. He has been resting a lot and dozing off and on. He's had a couple Popsicle's and some Gatorade. The signs are certainly there that the recovery will be quicker from this surgery than the one November. For one thing, we are not trying to blast him with seizures next - he can focus completely on getting better. He certainly has got some aches and pains. He has bandages over the four incisions on his head where the frame was screwed in, plus a bigger scar on his head where the leads were inserted and about a three inch or so scar on his chest were the little control unit was placed (about the size of a small slim flip phone). So even though everything went off without a hitch and the doctors were quite pleased with everything it has still been a pretty rough day for all.
We have an appointment already to come back in three weeks for the 'programming'. We leave here without the device actually being turned on yet. They want the patient to recover from the surgery and for the body/brain to settle back down. So while today was certainly a major landmark, the saga will continue for some time to come yet. Thanks to all for your thoughts and love!!
Tuesday, March 27, 2012
Go Team Adam!!!
Go Team Adam...go...go...go!!!OK, so many parts of the day we looked a little more like this:
It was a busy day today...we met the surgeon who will be performing the deep brain stimulation procedure, listened to various instructions, signed lots of forms, had lab work done, and finally an MRI. This took much of the day, and we were all pretty tired out (both mentally and physically) by the end of all of this. But...everything is good to go for surgery in the morning. Or actually the wee hours of the night, as we will start walking towards the hospital at around 4:45 to check in at 5:00 am! Surgery will actually begin around 7:30 am, and typically runs until early afternoon. I will be live-tweeting during the day, and will also try to post on Facebook periodically. I'll try to follow up tomorrow evening with a blog post--but no guarantees as to quality or quantity!
Following our medical visits, we were delighted to have a wonderful dinner this evening (they fixed us breakfast for dinner!) by probably the most gregarious group of volunteer chefs that we've seen this trip. It was a wonderful meal, and just the perfect end to the day.
Or...almost the end to the day! One more treat this evening as a therapy dog group visited the Ronald McDonald House with three wonderful dogs. Adam loved bonding with the dogs, and it gave us the perfect diversion this evening as we needed something to do rather than watch the clock and think about tomorrow's surgery. Meet a couple of the dogs below:
This is Titan...a loveable dog, and there certainly is plenty of him to love!
And this is Boomer. Boomer loves Adam, or at least the crumbs from dinner that may still cling to his face!Perfect ending to a long and tiring day! Next stop...neurosurgery!
Monday, March 26, 2012
Out and About
Our first full day in Fort Worth brought our initial appointments (all went well), lunch out on the town, resting out in the afternoon, and exploring the Ronald McDonald House in the evening.
We met with Dr. Hernandez in the morning--a follow-up from the fall surgery. He felt very good about the progress thus far, and referred to Adam's one seizure as a "freebie" since the day that it occurred had been so long and somewhat stressful on all of us. That was great news, as we weren't sure if the one seizure meant that it would be likely to lead to a returning pattern of regular seizure activity. We said brief hellos to the neuropsychologist (Dr. Gabriel) and the neurosurgeon who did the fall surgery (Dr. Donohue). In addition, one of the nurses carefully went over the consent document for the surgery itself...lots of information to take in. Good thing I'd stopped on the way to the appointment at the hospital Starbucks for a caramel machiatto!
Following all of the appointments we headed out and found a lovely little restaurant for lunch, Lili's Bistro, fairly near the hospital. The service was very friendly...and apologetic after our waitress dumped a glass of iced tea in my lap! She offered us a free dessert for our inconvenience, and we happily took her up on that...yum!!!
After a suitable resting out period in the afternoon, we enjoyed another dinner provided by the Ronald McDonald House volunteers. This is the most time that any of us have spent actually at the house, even though Brian has stayed here on both of our other week-long stays. It is really a wonderful resource for families--and a nice facility as well! There are about 40 rooms, which is bigger than I initially thought it might be. Dinner is provided every evening by local volunteers, snacks are usually available, and there are lots of spaces for families to congregate and spend time. Adam and I wandered about and took a few photos so that you can get a sense of how it looks around here.
Here we are! Settling in to our "home away from home."
Up on the 2nd level deck overlooking the inner courtyard/play space. Adam posing with one of the guard owls...supposedly meant to scare away other birds, which were actually fairly plentiful. :-)
Another view looking over the courtyard.
Brian and Adam enjoying the lovely and mild evening.
Lots of play equipment...Adam decided he was a little too big to play!
A lovely little statue in the courtyard...lots of memorial moments around the place. It is evident that that the house has been a meaningful haven for many families through the years...and their memories of little loved ones are tucked here and there. It feels celebratory rather than sad...and special to be sharing this space where so many families have experienced such a range of emotions while their children were being tended in the medical facilities nearby.
The halls are lined with fantastic photos of children being children! This is one of my favorite ones...Adam was willing to pose with this darling picture.
Lots of attention to detail...the game room has hand painted sports murals on the wall.
The main stairway down to the 1st floor entrance area. I love all of the natural wood!
I hope that you enjoyed our little photo tour of the Fort Worth Ronald McDonald House...and can picture us in our temporary home. We'll continue our adventures tomorrow with an appointment with the surgeon, pre-op procedures and instructions, and an MRI.
We met with Dr. Hernandez in the morning--a follow-up from the fall surgery. He felt very good about the progress thus far, and referred to Adam's one seizure as a "freebie" since the day that it occurred had been so long and somewhat stressful on all of us. That was great news, as we weren't sure if the one seizure meant that it would be likely to lead to a returning pattern of regular seizure activity. We said brief hellos to the neuropsychologist (Dr. Gabriel) and the neurosurgeon who did the fall surgery (Dr. Donohue). In addition, one of the nurses carefully went over the consent document for the surgery itself...lots of information to take in. Good thing I'd stopped on the way to the appointment at the hospital Starbucks for a caramel machiatto!
Following all of the appointments we headed out and found a lovely little restaurant for lunch, Lili's Bistro, fairly near the hospital. The service was very friendly...and apologetic after our waitress dumped a glass of iced tea in my lap! She offered us a free dessert for our inconvenience, and we happily took her up on that...yum!!!
After a suitable resting out period in the afternoon, we enjoyed another dinner provided by the Ronald McDonald House volunteers. This is the most time that any of us have spent actually at the house, even though Brian has stayed here on both of our other week-long stays. It is really a wonderful resource for families--and a nice facility as well! There are about 40 rooms, which is bigger than I initially thought it might be. Dinner is provided every evening by local volunteers, snacks are usually available, and there are lots of spaces for families to congregate and spend time. Adam and I wandered about and took a few photos so that you can get a sense of how it looks around here.
Here we are! Settling in to our "home away from home."
Up on the 2nd level deck overlooking the inner courtyard/play space. Adam posing with one of the guard owls...supposedly meant to scare away other birds, which were actually fairly plentiful. :-)
Another view looking over the courtyard.
Brian and Adam enjoying the lovely and mild evening.
Lots of play equipment...Adam decided he was a little too big to play!
A lovely little statue in the courtyard...lots of memorial moments around the place. It is evident that that the house has been a meaningful haven for many families through the years...and their memories of little loved ones are tucked here and there. It feels celebratory rather than sad...and special to be sharing this space where so many families have experienced such a range of emotions while their children were being tended in the medical facilities nearby. 
The halls are lined with fantastic photos of children being children! This is one of my favorite ones...Adam was willing to pose with this darling picture.
Lots of attention to detail...the game room has hand painted sports murals on the wall.
The main stairway down to the 1st floor entrance area. I love all of the natural wood!I hope that you enjoyed our little photo tour of the Fort Worth Ronald McDonald House...and can picture us in our temporary home. We'll continue our adventures tomorrow with an appointment with the surgeon, pre-op procedures and instructions, and an MRI.
Sunday, March 25, 2012
The saga continues...
We made it to Fort Worth! We're staying at the Ronald McDonald House (which is conveniently located just across the street from the hospital). Every evening, a local group sponsors a meal for everyone staying at the house, and tonight we got here just in time for tacos! A really nice end to a long afternoon of driving.
The next couple of days will be primarily appointments and testing...Monday we will actually be having a follow-up meeting for the fall epilepsy surgery with the neurologist and neurosurgeon. We don't know yet if anything else has been scheduled for Monday. Then on Tuesday, we will meet with the neurosurgeon (a different one) that will do the deep brain stimulation procedure. Adam will also have an MRI on Tuesday, and there may be some other pre-op procedural meetings...not sure yet. Then on to the the main event on Wednesday with the DBS surgery.
We're hoping to get out on the town a bit over the next couple of days while the schedule is a little lighter, so we'll see what we see! We just found out that there is a Legoland Discovery Center in Grapevine, so we may have to check that out. Or maybe we'll be feeling more cultured and will soak in some art at the Kimbell Art Museum. We'll see where our moods take us! Oh...and Dr. Monkey as well as his new side kick, Rockem Sockem Monkey are along for the ride, so hard telling what their vote will be! Maybe the Fort Worth Zoo?
The next couple of days will be primarily appointments and testing...Monday we will actually be having a follow-up meeting for the fall epilepsy surgery with the neurologist and neurosurgeon. We don't know yet if anything else has been scheduled for Monday. Then on Tuesday, we will meet with the neurosurgeon (a different one) that will do the deep brain stimulation procedure. Adam will also have an MRI on Tuesday, and there may be some other pre-op procedural meetings...not sure yet. Then on to the the main event on Wednesday with the DBS surgery.
We're hoping to get out on the town a bit over the next couple of days while the schedule is a little lighter, so we'll see what we see! We just found out that there is a Legoland Discovery Center in Grapevine, so we may have to check that out. Or maybe we'll be feeling more cultured and will soak in some art at the Kimbell Art Museum. We'll see where our moods take us! Oh...and Dr. Monkey as well as his new side kick, Rockem Sockem Monkey are along for the ride, so hard telling what their vote will be! Maybe the Fort Worth Zoo?
Thursday, March 22, 2012
Here we go...
What a difference a day makes...cliche, I know, but a fairly good phrase for our week! On Monday of this week (March 19), we headed back to Fort Worth for an appointment with Dr. Marks, the movement disorder specialist. He is the one we first met a year ago to talk about the possibility of deep brain stimulation (DBS) surgery to treat Adam's dystonia. Since epilepsy surgery must precede DBS, we spent the next several months going through testing and eventual surgery for epilepsy. Now, we were back with Dr. Marks, and we learned that he still strongly recommended DBS for Adam.
This was positive news! When we started talking about possible surgery dates, he first mentioned summer dates (July), but then he quickly switched gears to tell us about a cancellation that had occurred, opening up a date on March 28. I verified that I had understood correctly by asking if he meant next week, to which he initially appeared surprised, but then confirmed that was indeed what he meant. We all agreed to move forward with that date, assuming that all of the logistics could be worked out that quickly. I started doing the mental gymnastics of figuring out what we would need to tend to on the home front...I then felt a little queasy and overwhelmed...but eventually felt assured that we could make the necessary adjustments to our schedule, get a kennel date for Holly, etc.
So, the plan is that we will drive down to Fort Worth on Sunday, various pre-op appointments and tests will take place on Monday and Tuesday, and then surgery will take place on Wednesday. If all goes well, Adam will be released on Friday, we'll head home, and then return the following week for the initial programming session for the implanted device. If you want to learn a little more about DBS, you can check out the video that is linked from the hospital's webpage: https://www.cookchildrens.org/SpecialtyServices/Neurosciences/Services/Pages/Neurology.aspx Click on the video link for "Deep Brain Stimulation" and you can see some of the doctors that Adam is working with, as well as learn a little more about the procedure.
If you've been following us for awhile, you may be curious how things are going since the fall surgery. As of Monday, Adam had not had any seizures since leaving the hospital in November. Perhaps due to the long day in Fort Worth combined with all of the excitement of the upcoming surgery, Adam did have a seizure on Monday evening as we were en route home. This was a disappointing addition to our day, but we are still hopeful that it was an anomaly rather than a return to a regular pattern. We'll be following this to see what happens from here forward.
We'll keep you posted!
This was positive news! When we started talking about possible surgery dates, he first mentioned summer dates (July), but then he quickly switched gears to tell us about a cancellation that had occurred, opening up a date on March 28. I verified that I had understood correctly by asking if he meant next week, to which he initially appeared surprised, but then confirmed that was indeed what he meant. We all agreed to move forward with that date, assuming that all of the logistics could be worked out that quickly. I started doing the mental gymnastics of figuring out what we would need to tend to on the home front...I then felt a little queasy and overwhelmed...but eventually felt assured that we could make the necessary adjustments to our schedule, get a kennel date for Holly, etc.
So, the plan is that we will drive down to Fort Worth on Sunday, various pre-op appointments and tests will take place on Monday and Tuesday, and then surgery will take place on Wednesday. If all goes well, Adam will be released on Friday, we'll head home, and then return the following week for the initial programming session for the implanted device. If you want to learn a little more about DBS, you can check out the video that is linked from the hospital's webpage: https://www.cookchildrens.org/SpecialtyServices/Neurosciences/Services/Pages/Neurology.aspx Click on the video link for "Deep Brain Stimulation" and you can see some of the doctors that Adam is working with, as well as learn a little more about the procedure.
If you've been following us for awhile, you may be curious how things are going since the fall surgery. As of Monday, Adam had not had any seizures since leaving the hospital in November. Perhaps due to the long day in Fort Worth combined with all of the excitement of the upcoming surgery, Adam did have a seizure on Monday evening as we were en route home. This was a disappointing addition to our day, but we are still hopeful that it was an anomaly rather than a return to a regular pattern. We'll be following this to see what happens from here forward.
We'll keep you posted!
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