Texas-sized Christmas

We have never been down at Cook's near the Christmas holiday.  They go all out with decorations - inside and out.  The pictures here are just a small sample.  The circle drive out front has a 40 ft tree with some decorations that are themselves the size of a person.  Not a live tree, more of an sculpture/art work version of a tree.  Then in front of the main entrance there is a 25 ft Santa in his own little candy land/toy land.  It's a big state so they need a big Santa.

The Poulter's happened to be passing through town from the other direction on our first day here (yesterday).  Here's Pat and Peggy not being menaced at all by the Lone Star sized Santa.  Pat and Steve couldn't stay long and Adam was still dozing from surgery, but it was nice of them to drop in.

Here's a shot of the big atrium inside with tree, candy canes, snowman with list, and a more human size Santa thrown.  Santa wasn't in while we were there so we didn't get to sit on his lap.

What a difference a day makes.  Adam has been his old self today.  He hasn't napped, has eaten well, has been sitting up a lot and was even up and around some.  The main difference from last time is the absence of the severe 'spinal headache' type pain.  He has some discomfort around the incisions and such, but at very manageable and expected levels.  We expect to be able to go home tomorrow.

The pump is turned on and he was getting a small starter dose for most of the day.  The pump is currently set to 100 units of medication per day.  Even at that level he has noticed some more control of his hand and he was able to stand flat on his left foot briefly.  A 'high' setting might be 600 units per day.  This evening they bumped him up to 150 and assuming that works out okay, then to perhaps 200 in the morning.  That is the likely level they will send us home with at this point.  Then we'll come back in a couple weeks for a follow-up.  The trick will be to find the sweet spot where the spasticity is as relaxed as you can get it without turning the rest of the body into too much of a noodle (the Baclofen is a muscle relaxant).  The test we had last August where he was quite a bit looser for a short while was a 100 unit injection, but that was all in one quick shot, so it would be equivalent to something higher per day than these initial levels were at today.

All I Want for Christmas is a Baclofen Pump!

I think I need to catch up the story line a bit here...after the disappointing results from two different Deep Brain Stimulator (DBS) placements (and many, many adjustments, rounds of both physical and occupational therapy) and our frustrating week of a baclofen trial in July, we were all a little weary of thinking about treatment options. We shared our frustrations with Dr. Marks at a follow-up appointment in August, and he suggested an alternative test which would involve an out-patient procedure where a single dose of baclofen would be injected into the cerebrospinal fluid (CSF). This test could let us know if baclofen might have a positive impact on Adam's spasticity. Long story short, Adam had the out-patient procedure the next day, results were very encouraging, and a plan for implanting a baclofen pump was set.

That brings us up to this trip. Yesterday we arrived in Fort Worth for Adam's pre-operative appointment, in preparation for Intrathecal Baclofen Therapy (ITB) surgery. If you want to learn more about ITB, here is the link to the manufacturer's website: http://www.medtronic.com/patients/severe-spasticity/therapy/ 

Our day today began with check-in at 5:45 am, surgery lasted from around 8-9:30 am. Following the surgery (which went according to plan), for most of the day today Adam has been sleeping. This actually worked out fairly well, as he was supposed to stay flat on his back for 24 hours, to try to avoid spinal headaches, shifting of the catheter, etc. As of this writing (around 8 pm), he isn't really eating or drinking yet, still enjoying a lovely saline solution via his IV. And though he has had some short stints of alertness, he then returns to sleepy-time. The team assures us that this is very normal, and that in addition to the body's reaction to anesthesia and surgery, Adam is also getting used to a steady stream of baclofen in his body. All of these events compound to make for one drowsy young man.

The hope for tomorrow is that Adam will be more alert, and ready to let us know if he notices any differences in his spasticity following the surgery and initiation of the baclofen therapy. He is currently on a fairly low dosage, and it may be that the dosage is adjusted before we leave the hospital. He will likely have additional adjustments to the dosage after his body adjusts to the therapy.

The hope for tonight is that we can all get some very much needed rest!

Good News/Bad News

First the good news:

We're back home again, we've had a couple of days to rest up a bit, and we're getting back into our normal routines again.

Adam has not experienced any pain since we left the hospital.

Now the bad news:

Well, it is really less bad news than somewhat frustrating news.

We really don't know any more than when we started our week. Since the trial ended before the medication reached the potential beneficial level, we don't know if it would be a possible treatment for Adam. We don't know if it was the catheter placement that was the problem, or the medication, or perhaps that Adam is very sensitive to a catheter inserted in his spinal column and would've needed a longer time to adjust. We just don't know.

We're not sure yet about the next step--we'll head back to Fort Worth at some point to confer with the doctor. Until then, we're just glad to be home!

If Anything Can Go Wrong...

If you're following our adventure, I apologize for the gap in reporting. It has been a long, strange week, and it appears that even the ending is a little more complex than we had hoped.  Let me catch you up a bit.

After the initial good report following the catheter re-positioning on Tuesday, things just started to go downhill again. He slept well on Tuesday night, but on Wednesday started experiencing more pain. This coincided with an increase in the baclofen dose which may or may not be related. On Wednesday he also stopped feeling up to eating, which clued us in just how bad he was feeling. More pain meds followed with occasional periods of feeling a little better and spending time checking his social media connections via phone and laptop. We even watched a movie, Wreck-It Ralph, which he enjoyed. But the pain kept coming back. He told us on Wednesday that he just wanted to stop the trial and take the catheter out.

Thursday morning was no better, and we shared his wishes with Dr. Marks. He agreed that the pain was not worth continuing the trial, and made arrangements to remove the catheter Thursday at the end of the day. Essentially, we would need to get the dose of baclofen to a level that was double the one he was currently on to determine if it was going to be beneficial, and even if we did that, the pain that Adam was experiencing was going to be likely to trigger muscle tone so we wouldn't learn what we needed to learn. So the baclofen dose was adjusted down instead to allow his body to slowly wean back off of the drug.

Probably the high point on Thursday came when Adam received morphine in advance of the catheter removal, and we saw him the happiest he had been all week! He even shared a joke with the staff, that they should refer to "baclofen" as "back-no-fun" to describe the pain that he'd been experiencing all week in his back as a result of the testing. The plan was that we would be released from the hospital on Friday morning, and begin our return to normalcy, which added to the festive mood.

The actual removal of the catheter went smoothly until the very end, when the tip of the catheter snapped off and remained in his body. An x-ray confirmed the location of the remainder of the catheter and the team determined that it would require a surgical removal which would be scheduled for Friday. As of this writing, we are looking at the surgical procedure to remove the catheter taking place within the next few hours.

Unfortunately, this is most likely going to delay our departure until Saturday morning. They would like to see a more significant decrease in Adam's headaches, and will likely send us home with additional pain meds to continue after departing the hospital.

So...all in all it has been a disappointing, frustrating, and for Adam, very painful week. The doctors have told us repeatedly that they have not seen this series of circumstances take place before, and really don't know with certainty exactly what went wrong. The trial should have been only mildly uncomfortable, the catheter shouldn't have needed re-positioning, the catheter shouldn't have broken upon removal...and ultimately, Adam should not have experienced the miserable week that he has. So maybe now you can see why we didn't rush to keep you updated, we just kept hoping that the situation was going to improve and that we would have some good news to report. At this point, the good news is that we really should be about done here, and should be released tomorrow. But then...this hasn't been a week where the things that were supposed to happen have actually happened. We'll keep you posted.

Storms brewing over Cook's

Last night Adam began to complain more and more about pain in various places (legs sometimes, back a lot and neck and head). He had a pretty bad night and was in a very bad place much of today. We moved to stronger pain killers but the relief was short-lived and he was having trouble with basic activities. It became clear that something was amiss and by midday the doctors were scheduling some imagery (CT scan with dye) to take a look at the catheter position. This is not the usual response to the catheter placement. He was gone from about 3PM-5:30PM getting scanned. By this point he was given some Morphine. The scans didn't show anything clearly problematic but they did back out the catheter a few inches. They had some theories about what might be causing the trouble, but basically they don't really know. But he has been much, much better since coming back from the catheter adjustment. He has been alert and his old self this evening and even now at 9 PM when his earlier narcotics have pretty well worn off, he has only minor discomfort.

Big storms missed us just to the north this evening. And big storms of pain left Adam around the same time. We have yet to get to do any assessment of how the Baclofen might or might not help him. They suspended it for a good chunk of the day and he was in no shape for Physical Therapy testing.

Deja vu 2

We are down at Cook's Children's hospital in Fort Worth again. Last year we tried two different electrode locations with Deep Brain Stimulation. Both showed some promising improvement for a time, but in each case and with each adjustment the trend was for his condition to gravitate back to the baseline. There were a lot of emotional ups and downs.

Last spring it was suggested we try a Baclofen pump. Baclofen is a muscle relaxant used to help control muscle spasticity. It can be taken orally, but typically for strong spasticity as one might find in Cerebral Palsy or Multiple Sclerosis (or Adam), one can't orally take a dose large enough to get the levels needed in the effected muscles. So instead a smaller dose is pumped directly into the fluid surrounding the spinal cord. Before actually inserting the small pump under the skin, the patient's response to the drug can be tested. That brings us to where we are today. Adam had a very short surgery this morning where a catheter was inserted in the fluid filled area around the spinal cord. He can then be given baclofen in a manner similar to having an IV and see how it goes.

This is actually an older more classic procedure than Deep Brain Stimulation. Some doctor's might have done this first, but there are pros and cons. The Baclofen pump is less targeted (for instance, one can't just send the drug to one side of the body). The Baclofen pump has been around a long time and is considered very safely reversible if it doesn't work out.

We have been quieter about this trip than probably any of our others. Experience has taught us to be careful of managing expectations. The surgery itself went fine and Adam has been re-cooperating today. He has had some pain off and on but that is not unexpected. They did start some Baclofen late this afternoon but it is too early to judge things at this point. We are here and tired and we appreciate everyone's thoughts and good wishes. And we are enjoying unseasonably cool, rainy conditions that only happen a few times a century in Fort Worth in July (two consecutive days of highs in 70's with light rain and no sun all day).

Commencing initial programming...

After the October surgery and the very hopeful signs during the operation, it was difficult to wait until the day when we would return to Fort Worth for the DBS to be turned on. That day finally arrived this week, and we made our way south on Tuesday, Nov. 13. During our multi-hour visit, various settings were tried on each of the four contact points in the new location (STN). The most promising setting was identified, and we saw Adam being able to stand, take steps, and move his arm and hand with more control. Before we left we discussed a return to PT and OT, possible use of braces for his elbow and ankle/leg, and a follow-up appointment in January. We also were instructed in one setting change that we would be able to make at home.

When we left Fort Worth we were cautiously optimistic about the success of this new placement.

The first day after returning home, Adam felt that the benefits from the DBS were holding for the most part, with perhaps less effectiveness noticed by the evening. The second day, he felt that all of the affected muscles had tightened back up, and felt similar to how they had prior to having the device turned on.

While this was disappointing (especially in its similarity to the pattern we saw of initial benefit followed by a return to the baseline during the previous round of DBS), we are all trying to keep a very optimistic outlook and to remember that it is very early in the programming for the new location. We have been told before that the full benefit of the DBS won't likely become evident for a few weeks, and may take several months to a year to fully develop.

For now, we are working on re-starting PT and OT, doing stretches at home, and Adam is very much looking forward to the successful end of his first semester at college!

Wrapping things up

By the end of the day Friday, we weren't certain how things were going to play out for the remainder of the weekend. We had been told that there was a chance of being released on Saturday, but since we had stayed for two nights following the previous surgery, that didn't really seem likely. And then when Adam had a seizure Friday night, followed by another one on Saturday morning, it seemed even less likely.

When the on-call neurosurgeon (Dr. Donohue...the same one that had performed Adam's November 2011 surgeries) checked in with us on Saturday, he was concerned about the two seizures, and called for a CT scan to verify that something more dire (hemorrhaging, DBS lead out of place, etc.) was not occurring. At that point, we pretty much assumed that we should settle in for another night.

Adam was feeling much better, and we took the opportunity to get a little exercise by patrolling the halls with Tiger Monkey and Rockem' Sockem' Monkey in tow.

At some point before lunch, the neurosurgery nurse practitioner stopped in and let us know that the scans had been read by the radiologist and that she had been able to peek at them and nothing dire was showing up. That was good news, but we still weren't quite prepared for the visit by Dr. Marks (the movement disorder neurologist) a little bit later who told us that he felt that Adam was ready to go home!

Brian hustled back to the Ronald McDonald House to clean up the room and check out, and by 4:00 pm we were on the road north.

Adam has been released to return to school on Monday as long as he doesn't participate in anything too rowdy, so he will have managed to squeeze in brain surgery on fall break without missing any additional classes! That is some serious dedication to his studies!!!

We won't know for a little time if this placement of the lead will be effective or not. At this point we have a tentative appointment to return for the initial programming on November 13, and we'll be keeping our fingers crossed for good results. We'll keep you posted!

The Hat that Heals? or Whole Lotta' Knittin' Going On

Although not completely finished, the brain hat has already become quite a conversation piece around town! It has been a labor of love that has involved quite a number of people, and I'd like to share the story of how it came to be.

It all started with a photo of a knitted brain hat that Auntie Sharon shared with Adam via Facebook. It was suggested that it would be a worthy project for us, and a rather appropriate one as well! While I entertained the thought of just seeing how close I could come by looking at the photo, I decided to go ahead and see if I could track down the pattern since we were fairly close to the next surgery and it would be fun to have a finished product to wear to his pre-surgery appointments.

Being the savvy searcher of information that I am, I was able to track down the pattern on a stitchery social media site called Ravelry. The pattern was for sale for a modest amount, and since the designer identified herself as a poor med student, I felt inclined to go ahead and pay for the pattern. I even sent a brief message letting the designer know that I was making the hat in honor of Adam's next neurosurgery, and she let me know that she wished us well and appreciated knowing how the pattern was going to be used. If anyone is interested, here is the link to her page: http://www.ravelry.com/patterns/library/brain-hat-knitting-pattern-not-actual-hat (I'm not sure if you can get to the page without an account).

I left the next day for a week long trek to the northwest to visit family, and was able to pick up the supplies I needed at a fun little yarn store in Silverdale, WA. The yarn I found wasn't exactly the "brainy-pinkish-peachish" that Adam and I had discussed, but instead it was a variegated yarn that included a peach color and graduated to a darker red that the lady at the yarn store thought could be a good match for dried blood. I had filled her in on the project I was planning for, as well as who I was making it for and we both agreed that dried blood was an appropriate color to use.

The pattern called for using circular knitting needles which was new for me, but fortunately, Carol's friend Keri was coming over for a craft time and she was able to get me going with this new technique. As I worked away on building up the stitches on the cap, I thought it might be fun to get some other knitters involved in the project and so eventually family and friends Carol, Chad, Jacynda, Matthew, Caleb, Brian, and Susan all added some stitches. Adam also assisted by helping to place and pin the loops to make the brain decoration.

While I was still in the northwest, I talked to Jacynda one day over the phone and explained the project to her. It sounded familiar to her, and she thought that she had seen another student wearing a hat like that at her school. Her medical school. Yep...it turned out that it was the same woman who had designed the hat and posted it online! She is one year behind Jacynda in school, and so they knew each other. Talk about small world coincidences!!!

Although not completely finished (yes, Mike, Adam indeed only had half-a-brain), the hat came down to Fort Worth with us for the surgery, and was indeed proudly worn for the pre-op appointment. Adam's surgeon fully supported our choice of projects, although he did have suggestions about the color (he would have preferred as close to the natural color as possible), and adding specific modifications that would reflect the surgeries that Adam has already had. Adam and I mentioned our idea of sewing a bead on to symbolize the top of the lead that is part of the DBS system--he approved. Adam's primary movement disorder neurologist also approved of the hat, and actually kind of liked the fact that it only had half of the squiggles sewed on, giving it the look of a hemispherectomy. (Oh, those neurologists and their sense of humor!)
I kept knitting on the remaining cord throughout the time that we spent in the surgical waiting area, which is also rather fitting.

So there you have it...the story of the brain hat with all of the people that have played a role in its creation! I hope I didn't forget to mention any names...if I did, please chalk it up to my lack of sleep and not a lack of appreciation! And as to the power of healing that the hat may provide? Well, Adam is feeling much better this evening (post-surgery), so I'm thinking that it has the power of love knitted and embedded into every stitch by many people and that seems to be the best healing agent of all!

Deja deja deja ... vu

Here we are in Ft Worth again!

First off a quick review. Adam had DBS surgery late last March, they turned it on in mid April, we went back for adjustments in May and June and then for a more extended period in Aug. He had periods of nice benefit. The classic trajectory with DBS for Dystonia is for it to take time for the full benefit to develop with the effects often being modest at one week and then better at one month and better yet at three months on up six months to a year. The pattern we experienced was quite different in that he had some good improvements but they would peak 1-2 weeks after an adjustment. Then the dystonic tone (contractions) would start to come back, more sporadic at first and then eventually more solidly. We went through a couple of cycles of this and the benefits seemed to last a shorter period each time. This process peaked in our August visit where we were checked in down here for the better part of a week. After trying some much more complicated settings they hit a spot where he was a lot better again. But it lasted about 6 hrs and then it faded yet again. That was a fairly low point, although it was important in that it was a chance for the doctors to see and measure for themselves the pattern we were seeing.

As you might guess there have been a lot of ups and downs this spring and summer. And that is why blog posts have been a bit thin as well. I have some good video footage from 'before' DBS and then some nice 'after' video when he was doing better. My original vision was to continue documenting his improvement and perhaps even put together a YouTube showing his journey. I am still glad I have the footage and will do something with it someday regardless, but being on the roller coaster changes your perspective and focus. What seems like a fun project on the way up, loses it's appeal and goes on the back burner while you are falling back down. This brain stuff is tricky - the movie 'Awakenings' with Robin Williams comes to mind - although our changes have been nowhere near as profound as those.

In the meantime, it has been a great fall. Adam really enjoys the smaller campus of NSU and is doing very well in college. He still has not had a seizure since June 20. So he is back up to 4 months without a seizure. His recent record for seizure-free is the first 4.5 months after the Nov 2011 surgery. With some shifts in medication timing and use of the 'extended release' version of his main seizure med perhaps were are finally approaching a point where we can call them under control. Certainly the 3 seizures he has had in the last 11.5 months is by far the lowest he's had since he started (used to be 10 times that number).

So back to being in Ft Worth again. After the August visit our doctor became convinced that the original target area (the GPI) was just too damaged by Adam's stroke to be an effective DBS site. There are three targets for DBS that we have learned about; the GPI, the STN, and the Thalamus. The GPI is the classic target for Dystonia in young people (which is why they started there) with the STN as an alternate. DBS is also done a lot in older patients for essential tremor/Parkinson's and there the STN is the primary target with the GPI as secondary. The Thalamus I think is newer altogether. Basically, they just haven't done a lot of cases like Adam, where the Dystonia is a secondary effect of a stroke or stroke-like damage. They have done one case where they switched to using the STN and had great luck and another where they had no luck. So there we are. We can keep the brain we have or try to go for the brain behind door number 2. (Let's Make a Deal reference for you younger folks out there). The fact that he had some success with the GPI is a sign perhaps that the condition is capable of being improved.

Today was the surgery day. Adam did really well and everything went fine. As it turned out the first surgery we did for epilepsy was by far the hardest on his system. He bounced back much quicker for the DBS surgery last March. He is likely to do the same or better this time. He didn't need to miss any class since he had two days off for fall break and he's hoping to be back in class on Monday. The doctors don't see any reason why that shouldn't be the case. If you've never had brain surgery, I know it sounds like a big deal but you get used to it. Actually there wasn't that much to this one. Last time they made a nickel size burr hole in the skull and then left a plug device there in its place. This time they were able to use the same hole. They removed the DBS electrode from last time and placed a new one in the new location (same access hole, different trajectory). Basically it is a matter of sliding this long skinny device in between the folds of the brain surface down to the target area. He will be able to use the same control box that is under the skin of his chest so there was a lot less tunneling of wire this time as well. Another thing we learned is that the recovery is also quicker and less painful in these because they don't have to cut through any muscle layers. Evidently that is a big factor in the recovery process in say an abdominal surgery. But once you cut through the scalp skin, the skull is right there.

Adam is on the high end of the age range they usually work with here and he has a reputation for catching them off guard with his wry comments and humor. When Dr Marks came out to talk to us after the surgery he told us another Adam comment that cracked everybody up. He needs to be alert during parts of the process so they interact with the patient a fair amount. Last time he told them having the burr hole drilled felt like having his face pushed into a running massage chair. This time as they asked him a series of yes/no questions he said that normally he would answer a question like that by nodding his head. They thought this was pretty funny coming from someone whose head is mounted into an immobilizing frame specifically so that they can precisely guide equipment and cross reference with the MRI scan data.

When they place the leads they do a few things: they 'listen' for the brain's own activity there, then they stimulate the area and have the patient move to see if they can see any impact and they make sure that no odd side effect were triggered. They like what they saw on all three counts. They felt his arm moved a lot better when they stimulated the spot but we have learned not to put a lot of stock in this yet. And the main thing they want to see now is a lack of side effects.

We are about 9 hrs post surgery now. He napped a lot in the afternoon, but ate a hardy dinner and is resting watching some TV now. We have an MRI in the morning, see the doctor and then maybe get released tomorrow or Sunday morning!

Update time again

We've been back to Fort Worth to spend time with some of our favorite medical personnel, and have a little further information to share.

First, the really pretty exciting news is that Adam has only had 3 seizures since we left the hospital after his epilepsy surgery last November. That is pretty amazing! All three of them happened on days when he was either extra tired or late on a dose of medication...so possibly avoidable. He has been on an extended release version of his medication for about a month, and the hope is that will help to cover slight variations in the time he takes his meds. Still...this is really pretty incredible since he had averaged 1-2 per month prior to the surgery.

Second, as we've been reporting, there really haven't been sustained positive results from the DBS that was implanted in March. After lots of tests and adjustments of the current implant, Dr. Marks is now recommending a second implant. He will consult with the neurosurgeon further, but the possibilities that they are looking at are 1) keeping the current implant in place (GPi) and adding a second implant in the STN, 2) removing the current implant (in the GPI location), and adding two implants in two new locations...one in the STN, and a second one in the thalamus. We may not know which option they recommend until the day of the surgery. At one point they were also discussing adding a lead to the opposite side of the brain...but the MEG scan that he had in August does not show a need for that option.

At one point recently, it was suggested that the surgery might happen as quickly as next week, but we learned that wasn't going to work out for all of the folks involved. Instead, he will most likely be having the surgery on Friday, Oct. 19. This works out really nicely for us since it is Adam's fall break, and he won't miss as many class sessions. At this point we're scheduled to return for programming on Tuesday, Oct. 30, which is Brian's birthday. Kind of fitting since we drove down to Fort Worth on Peggy's birthday for the most recent appointment which was the following morning. I guess this is the year of medical birthday celebrations!

We'll be adding more information when we know more...probably not until we go for the surgery in October. Until then, happy brain health everyone!

On the road again...

We made it home! We did end the week with a last visit with Dr. Marks, and a confirmation that the DBS in its current position was not providing much (if any) improvement in Adam's muscle tone and mobility. We did see glimpses along the way, such as the day he took steps down the hall at the hospital. But the positive effect faded in a few hours, and the only other time we saw an improvement after an adjustment to the settings it only lasted a few minutes.

The current thinking is that the lead placement in the internal Globus Pallidus (GPi) turned out not to be a good location for Adam. It is the more common placement for dystonia patients, but since Adam's damage is in the same area, it appears that this doesn't work in his case. Dr. Marks is currently thinking that it might be beneficial to place a second lead in the subthalamic nucleus (STN). Some patients have benefited from having leads in both places. He will be meeting with the on-site team, and we will be going back down to Fort Worth in about a month to discuss it further.

So as we suspected, we left the hospital with some disappointments and some hope. We've been down this road before, and are determined to continue to keep our collective chins up and work toward the best possible outcome. What a long, strange trip it's been!

And speaking of long strange trips, here we are getting ready to leave the hospital.

On our way out Adam wanted to stop and take this picture for his uncles. There are a number of gardens in and around the hospital. This one (called the Family Garden) specifically has a dedication 'in honor of all the uncles in every family'. Must be a story associated with that, although we don't know what it is.

If I only had a brain...

Great news! After today's scans (and MRI and MEG), we can verify that Adam definitely has a brain! OK, maybe we did know that already...from numerous scans in the past, but always nice to know it is still intact and working.

As far as the other news...not such clear results. We'll learn more about the results of the MEG scan tomorrow when we have our last conference (for this visit) with Dr. Marks. At the moment, Adam's DBS is turned off, and there really isn't a strong distinction between having it on or off at this point. The scans were able to verify that the DBS lead was still in the correct place, which addressed one question of possible shifting that might have explained some of the problems with effectiveness. It is unclear at this point if they will turn the device back on before we leave or not. Pretty much up to Adam at this point.

As for the future, Adam's team will meet and confer over the new information gathered on this visit. One possible approach might be to add a second lead (and a second generator). This has been at least partially  effective with some other patients that are similar to Adam. We won't know for certain if this will be the recommended path until the team meets and then we come back for a future appointment.

Our short term plan is that Adam will be discharged from the hospital tomorrow (Saturday) and then we will have a couple of days to help him get ready for his first day of classes at NSU!

Same old, same old...

By the time you have spent a few days in the hospital, things begin to settle in to a routine. As we move past the mid-point of the week we realize that we're starting to fall into the swing of the hospital schedule. The current plan is that Adam will be released on Saturday, but there are still a few things that will be finished up over the next day and a half.

Today Adam had an evaluation with the speech therapist, and she had some good suggestions for helping with times when he is having difficulties getting his thoughts out. He also finished up with the neuropsych evaluation which is a follow-up from the initial pre-surgery evaluation that took place last summer. They want to verify that the surgeries didn't have any negative effects on cognitive processing. He also had another round of adjustments to the DBS with Dr. Marks to try to find the best possible settings.

Tomorrow will likely bring some sessions with physical and speech therapists, as well as a brain scan called Magnetoencephalography (MEG). He originally had a MEG scan four years ago in Memphis, and so this time they will be able to compare the results to the previous test. It's a pretty amazing device, with a vault-like room that blocks out all kinds of outside interference. If you are interested, here is the link to the Wikipedia article: http://en.wikipedia.org/wiki/Magnetoencephalography (yes, I know...a librarian citing a Wikipedia article...shameful!). They have only recently purchased and installed the MEG equipment and our doctor is curious to see how it works with a patient that already has a DBS installed. Hopefully it will be helpful in providing more information.

We're also planning on another meeting with Dr. Marks to discuss where things go from here. After the excitement of taking some steps and experiencing significant improvements in muscle tone and flexibility on Tuesday, things have pretty much reverted to the way that they had been prior to coming down for this visit. That was a real disappointment for all of us. When he tried different settings today on the DBS, Adam had another brief moment of improved tone, but it was only a short respite before everything returned once more to the previous state. We're not exactly sure where things stand currently, and what will be the plan as we move forward. Hopefully we will learn more tomorrow.

So...as we wind down towards the end of another hospital stay, we suspect that we may end this trip the way we have ended others, with many questions yet to be answered. This has been an interesting adventure, we are still learning much about the brain (and more specifically--Adam's brain), and certainly much about ourselves. Thanks for taking the journey with us!

Chillin' at Cook's

Adam relaxing with Dr. Monkey and Rockem' Sockem' Monkey.

Not surprisingly...there has been a fair amount of room time since we arrived.  Dr. Monkey and his medical staff have been keeping track of Adam while he is in the room, taking his vitals, making sure he is doing OK, and that he doesn't need anything. He also tracks Adam's activities, and makes sure that he is staying active.

We take advantage of the local 'craft' time.

Here Dr. Monkey is checking out the offerings of the Child Life department...today is arts and crafts. Lots of activities to keep Adam and the other patients occupied during their stay. 

Adam's finished craft project being shown off by Dr. Monkey and Rockem' Sockem' Monkey.

 Cool tote box, eh? Thanks to Child Life, Adam completed decorating this tote box with a scene from his creative imagination. It was originally going to be a knight and a dragon...but then things got interesting and the knight went after this unknown (and previously unseen) creature. Adam will have to fill us in on the biological information about the creature. 

Day 2 and new programming

Adam taking steps with his medical entourage. And there was much rejoicing!

To catch you up a bit...on Monday, the main activities were getting checked in and doing some preliminary assessments by the physical and occupational therapists. They wanted to establish a baseline so that it would be easier to identify whatever changes (good or bad) occurred in his mobility and arm/hand use. We also had a brief visit with Dr. Marks (the movement disorder neurologist) who promised that we'd be seeing him again on Tuesday for the first round of adjustments. The day ended with us taking a few laps around the floor (Adam on his scooter), and watching a movie in the room.

Today (Tuesday) started early with adjustments to the DBS. Dr. Marks wanted to try some more complex adjustments that involve different settings for the arm and leg, and that was the approach that he tried today. The initial results looked promising, and indeed, by mid-day Adam was able to walk around the floor a bit with the physical therapist. The above picture shows part of that walk...with Dr. Marks (directly behind the therapist), MaryAnne (the main DBS adjustment nurse), and others in the fan section!  It just happened that they showed up on the floor just as Adam was making his debut stroll and everyone stopped to cheer him on! 

The day continued with additional physical therapy activities, preliminary work on the neuropsych evaluation, and some occupational therapy activities.  Pretty worn out after all of the excitement, Adam ended the day with another movie. We're all looking forward to seeing what tomorrow will bring.

Dr. Monkey and colleague taking a short break during the packing process.

Welcome to Texas. And only 103 degrees today. And blue skies with a few clouds. You know its bad in Oklahoma when you go to Texas in Aug to escape the heat. Yesterday it got up to 113 in Tulsa before the smoke blotted out the sun. Positively apocalyptic.

Adam checked into his room in the rehab unit. And enjoying some hospital 'swag' in the form a Koala bear. I don't know anything about the Koala's medical training or background.

The Year of Living Medically

Years ago I enjoyed a film called "The Year of Living Dangerously." It was the story of a young journalist who landed in the unfamiliar country of Indonesia during a time of turmoil. The things that were familiar were suddenly not available, new rules guided his decisions, and he did the best he could under the circumstances. Not a bad description of our year...substituting Fort Worth for Indonesia! We recently realized that with the upcoming week in Fort Worth, we will have spent more than a month on site at Cook's over the last 16 months. While we have great affection for Adam's medical team and nothing but praise for the care received, it just wasn't the "vacation" that we had in mind for this year. Certainly a learning experience, however!

Since the DBS surgery in March, Adam has returned to Fort Worth three times for adjustments to the settings on the brain stimulator device. He also worked through several weeks of physical and occupational therapy (PT & OT). There were positive signs along the way, some improvements of muscle tone and flexibility, but then eventually, we were pretty much back to where he was before the surgery.

Dr. Marks felt that it would be worth having Adam come back to town, be admitted to the rehab unit (we've not stayed there, before), and do a series of adjustments to the DBS while having the on-site PT and OT staff make assessments of his muscle tone. Since we'll be there anyway, they may run a couple of other tests, do a follow-up neuropsych exam, and possibly build a new leg brace. They may throw in a Botox treatment on his leg, too...since years have passed since they last tried that approach.

It should be a busy week, and hopefully a productive one!  Dr. Monkey is making the trip with us, and we'll try for some new photos.

Phase II...step by step

Sorry for the gap in information...our best intentions were to post earlier, but somehow that didn't quite happen.

We're now in a new phase of the process, having the DBS device "turned on" on April 18. That was an interesting process as there are four contact points on the DBS lead, and those can be programmed at different levels individually or together. The first programming session ran for a couple of hours with each point being tested independently and at varying strengths. At each strength, Adam performed different tasks, such as pointing and moving one finger, moving his hand from side to side, moving his foot, etc. It was a very meticulous process. The nurse, MaryAnn, ran most of the programming tests, with Dr. Marks poking his head in periodically to check on the progress. Once the testing was complete, the optimal setting was identified and the device was set to that setting. While the change wasn't nearly as dramatic as we might have hoped, we were informed that with dystonia it is very common to take weeks or even months to realize the full benefit of the DBS.

Adam did feel that there was a change in the muscle tone in both hand and foot as a result of the DBS being activated. Since he was likely to want to take more steps, we celebrated that evening by going shoe shopping to locate some shoes that provided more ankle support. The next day we had a brief follow-up visit with the neuro-surgeon as well as with the movement team, and were released to head home with instructions to begin both physical and occupational therapy (PT and OT).

We were thrilled to locate both PT and OT in one location...and in Tahlequah! Even more exciting was the fact that we were scheduled with an OT that we knew a little...the dad of one of Matthew's good friends. Adam started a three-times-per-week schedule of both PT and OT, with home exercises to continue the work. With several sessions under his belt, he is seeing improvement in both his leg/ankle/foot and arm/wrist/hand. Things are not moving as fast as any of us would prefer, so we are learning to be patient. Both of his therapists are pleased with his progress, and so we trust that they are seeing the subtle changes that are hard for us to notice. Adam is standing upright some each day, and even taking supported steps. The goal right now is to work on good positioning while standing, stepping, and sitting...getting his muscles to re-learn positions that are most helpful in order to move forward with daily tasks. Essentially, the DBS interferes with the neuro-messages that are pulling the muscles into contracted positions, and now the brain and muscles are re-learning the communication to return the muscle control to Adam's conscious choice.

The next visit to Fort Worth will be on May 29, and Adam's progress will be checked and the DBS programming adjusted as needed. We keep moving forward!

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.