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.