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!