Follow-up Appointment

We just got back from the follow-up appointment...roughly 10 hours of driving for around one hour of doctor time. Good thing we like our doctors! Nothing earth shattering in terms of news, but good report on how the scar looks and Adam's general recovery from the surgery. We met with Dr. Hernandez (the neurologist specializing in epilepsy), Dr. Donohue (the neurosurgeon who performed both surgeries in November), and as a bonus--we also saw Dr. Marks (the neurologist specializing in movement disorders). The last one was a last minute surprise, as he was available to visit with us for a few minutes as we had questions about the next phase in Adam's treatment.

So...here is what we learned today from our various doctors:

1. Adam won't be changing medications right away...we had mistakenly thought that he might be able to cut back on some medications after the surgery, but when asked that question today, were told that Adam would have to be seizure free for two years before they would consider that. Oh. Well. That was not what we were hoping to hear...especially since the longest he has ever gone without seizures was three months, and that was several years ago. We are now at around five weeks without a seizure since the surgery, so that is something!

2. Adam will continue to see Dr. Hernandez for epilepsy treatment, but he will now be moving towards treatment for the dystonia with Dr. Marks. If you have been following our saga for a while, you may recall that we were originally referred to Dr. Marks months ago (first visit was in March) to see if Adam would be a candidate for Deep Brain Stimulation (DBS) surgery. Dr. Marks wanted us to work through any possible options for epilepsy surgery first, as that can't be done after the DBS. So, now that we've worked through that process, we are back to dealing with the movement issues.

3. Adam will likely be going in for DBS surgery in either late spring or early summer. It will be a shorter time commitment than our last hospital stay...apparently they generally do the surgery on Wednesday and then send you home on Friday. Part of the scheduling will depend on the healing needed from the first surgery prior to the next surgery. We will keep you posted as we move further on those plans.

So, that catches you up to where we are now!

P.S. We're going to change the settings to try to make it easier for you to add comments to the blog...we've heard that some of you have tried and have not been able to post comments. The new settings will allow anonymous posts, so if you don't sign in, please indicate who you are in your comment so we'll know who you are!

The Brain Quiz

Here is the Brain Quiz that lots of people have been asking about since its debuet at the Brain/Brian Party. The answers will be posted as a comment this coming Monday for those of you who want some time to try and figure it out.

1. True or False: Humans are born with all of the brain cells they will ever have.


2. Who wrote the following quote? “All we wanna do is eat your brains. We're not unreasonable, I mean, no one's gonna eat your eyes.”


3. EEG is an abbreviation for
   A. Electric enhancement graph
   B. Electroencephalography
   C. Ekky Ekky Goo
   D. It’s not an abbreviation. They just misspelled egg.


4. Which of the following have a character named “brain”?
   A. The 2008 movie Igor
   B. The 1960s TV series Thunderbirds
   C. The 1980s TV series Inspector Gadget
   D. All of the above


5. True or False: Jellyfish have a nervous system.


6. Finish the following quote. “Gee Brain; what do you want to do tonight?”


7. Toxoplasma gondii is
   A. A made up word.
   B. A toxin involved in brain cancer
   C. A virus that could potentially someday cause a zombie apocalypse.
   D. A candy company based in southern Venezuela.


8. True or False: Mental abilities are separated into the left and right cerebral hemispheres of the brain.


9. The brain consumes up to ____ percent of the energy used by the human body, more than any other organ.


10. Who is The Brain’s arch-rival?

Some thoughts after coming home.

We have been home for a day now. It has taken a little time to be able to write more of a final summary. After having a great appetite, being in good spirits and even getting up out of bed for awhile on Sunday, Adam seemed to run out of steam mid-afternoon. He ended up sleeping for about 16 of the 18 hours from 3 PM Sunday to 9 AM Monday. He also ran a low fever for a little while. He also had a seizure late Sunday evening. That was perhaps the low point of the entire week. It felt like we had gone through all this trauma to still be where we started.

Monday morning, the doctor assured us that it is not unusual for extra seizure activity in the days after surgery. These seizures should not be taken as an indicator one way of the other as to how successful the procedure will ultimately turn out to be. We have seen/heard a variety of different numbers given for the likelihood that the Multiple Subpial Transection procedure will yield a reduction in seizures - 70% (from WebMD), and 50% or 33% from two different doctors here. I know for my own personal coping mechanism, I try not to get my hopes up too high and hopefully I will be pleasantly surprised instead.

So we enter a long wait and see period. They don't want to change more than one variable at a time, so they will keep him on his full meds for now and we will see if he has less seizures. He had only had one seizure in Sept and one in October, so we would need to see no seizures for a good 3 months or so, before we could start to feel like there was a difference.

We have a follow-up appointment with the neurologist and neuro-surgeon in about 1 month. Earlier, when we were in conference with these same two doctors, they made some comments along the lines of never giving up on a patient/and being on board for the long haul. So it feels good to know that a couple of the top doctors in the field are committed to Adam's case. On the last day a different doctor mentioned a technique that is still going through FDA approval trials where a small device is implanted that actually acts like a tiny EEG monitor and when it detects a seizure starting it can perform a pace-maker like pulse to prevent it.

So we forge on ahead. And the ultimate outcome of this first procedure may not even have that much bearing on Adam's prospects as a Deep Brain Stimulation candidate - that is the procedure to address his mobility issues and what we came down to Ft Worth for, originally back in March, anyway. Oddly enough, one effect of this past week is that brain surgery doesn't seem all that scary anymore.

Adam is doing great at home. Again, we can't thank everyone enough for all the love and support that we have felt these past days and weeks. We will keep you posted! Love to you all.

Homeward Bound!

We've checked out of the hospital and are now homeward bound! Looking forward to our own beds and a less structured schedule. We'll post more of a summary soon. For now--a HUGE thank you to all of you for keeping up with us and sending thoughts, prayers, messages, calls...we felt your love and it made all the difference!!!

Steppin' Out

We've hit a couple of important landmarks today--Adam had his head bandage removed, and was also able to get out of the room on his own power! The first two photos below are a before and after shot of his recent looks...the lovely white turban is no longer, and the impressive looking scar is now visible in all of its glory!

This was actually taken a day ago, when his eye was still a little puffy:


And after the bandage was removed:


Along with the bandage removal, Adam had all of his attachments removed (sensors monitoring heart rate, respiration rate, etc.) so he can now move about a lot easier. We took a walk around the unit with our visitors coming along for company...and of course, Dr. Monkey leading the way! (We apologize that Dr. Monkey hasn't made as much of an appearance during this hospital stay...he has been rather busy with his various responsibilties!)


After a busy morning, we had a little quieter afternoon with rest time for all. The plan is still that Adam will be released on Monday since he is meeting the significant landmarks on his recovery. It will be very nice to be on our own schedule again, sleep in our own beds, and move to the next phase of recovery.

Visitors

Adam has recovered much faster from the surgery this time. He was awake most of the day and was back to pretty much a full appetite and normal foods. He even put his full weight on his foot on the floor as they moved him from the ICU bed to a wheelchair to move him back to a regular room. He had been laying down or reclining in bed pretty much solid since Tues morning.

We also had some visitors today, which was a great change of pace and much appreciated. Good friends Steve and Pat Poulter had driven down from Wichita last night. As they passed through Norman, Matthew and his friend Caleb joined them. They all arrived after visiting hours last night, but we all congregated at the hospital late this morning and when Adam was moved to a regular room around 1 PM, we hung out much of the rest of the day there. Adam really enjoyed having the company. Then later in the evening we had a Skype call with Aunt Sharon and Uncle Charles to cap off the banner day.

Being the weekend, we haven't seen our main doctors to learn anything new there, but hopefully on Monday. It feels a bit odd to have gone through the surgeries and have them go fine and with no negative side effects, but to still not really have any idea if the whole thing worked or not. Time will tell. At this point we are just glad to be on the 'after' side of this particular adventure.

What a Difference a Day Makes

By yesterday evening, we were frustrated. Disheartened. Unsure. If you've been following along, you saw it in our posts. The fact that each Brian and I wrote a post yesterday probably clued you in that there was a lot on our minds, and it wasn't all cheery. But today started with the reality that the surgery was going to happen today...and that in and of itself was an important step towards our eventual goal of returning home once again! Also, we were all in agreement to go ahead with the MST procedure, and whatever happened as a result...well, we would live with that result and move forward from there.

So we headed down to surgery, if not with a cheery excitement, at least with a sense of relief that this was our last trip to surgery for this round. I can't speak for any other surgical department, but here at Cook Children's, they work hard to break any tension in the pre-surgery procedures by interacting joyfully with the patient, and employing humor whenever appropriate. A great fit for Adam as well as for Brian and me! The surgery started earlier and moved more quickly than the other one, and we were being invited to meet up again with Adam by around 1:00 pm in ICU. At this point, he was still rather groggy, but looked fine.

Towards the end of the afternoon, he began to come around more, and agreed to try some ice chips, which led to a popsicle, which led to a pudding cup, which led to ordering soup from the cafeteria, which he topped off with applesauce and another pudding cup! In other words...for the first time all week, he really had an appetite! We also found something on TV that looked interesting, and he ended up smiling, and almost laughing at something silly on the show. Wow! Because of the position of the TV relative to his bed, it encouraged him to open his swollen eye, and over the course of the evening, the swelling really decreased and he was able to open the eye almost to the same extent as the other one!!!

Suddenly worrying about what may or may not have resulted from the surgery seemed to take a back seat to the joy in welcoming back a smiling and hungry version of Adam! I'm sure that there will be more bumps in the road to recovery, but today reminded us that we are going to get to where we need to be.

We also heard that we will likely be released to go home early next week...more on that front as we get to that point. The fact that this is going to be a shorter visit that we originally thought has a lot to do with how quickly Adam went into seizures after the first surgery, allowing the doctors to gain the data needed for decision making within two days. We are very grateful, and look forward to moving home as soon as it is safe and appropriate for Adam to be discharged from the hospital.

We look forward to learning more from the doctors about where we go from here in terms of Adam's treatment and medications, the possibility of investigating Deep Brain Stimulation for dystonia down the road, and what we should be watching for in terms of possible benefits from today's surgery. All in all, a much more positive outcome than we thought possible yesterday at this time.

Thanks again for sticking with us during this adventure--it has really helped to know that we have a great network of incredible people who are supporting us through "the good, the bad, and the ugly" of this grand adventure!

A Rough Day

One of our good friends who has had kids in the hospital and is also a medical professional gave us a good piece of advice before we came. She said not to be too alarmed if Adam looked pretty 'roughed up' at times through the process. As a parent it is natural to have a strong gut reaction to seeing your child in apparent distress, but that it may not be that big a deal medically.

Evidently a typical part of having this surgery is swelling around the face and eye on day 2 or 3 as fluid drains from the region of the head that was opened up. The area around Adam's eye started to swell last night and by this morning his right eye was basically swollen shut. Nothing serious and mainly annoying for Adam, but all day he has looked like he had a terrible reaction to a bee sting or something.

This has been a rough day so far. He had his third natural seizure in the wee morning hours. Mid-morning the doctor came by and gave us our first sense that hopes of the best-case scenario outcome had dimmed somewhat. Late morning they came by to do mapping of Adam's language area. They had Adam read out loud from a picture book (The Armadillo from Amarillo). The plan was to then send pulses into certain of the grid electrodes and see which ones interrupted his ability to read the book. The first attempt lasted less than five minutes before it triggered another seizure (which happens). After a couple hours of recovery, they had a much longer reading session but then it triggered another seizure.

So at that point, he had had three seizures in about 8 hours and was thoroughly wiped out. He looks like he has been through the ringer. He has slept all afternoon after having some morphine again. They are also putting him back on seizure meds as they have seen all the seizure activity they need to see.

So surgery again first thing tomorrow morning. They will remove the grids and perform the MST procedure. The ultimate goal of being seizure free with no meds is not looking terribly likely (although it could happen) but there is still a decent chance that he will have some worthwhile benefit. And we will know that we have gone as far as one can with current seizure surgery technology, which is worth something as well.

Multiple Sub...What?

One of the goals of the electrode grid placement was to get much more detailed information about what is going on in the brain during seizures...specifically, where they begin, and where they travel. Additionally, we needed to know what other functions are housed in the same locale as the seizure origin.

Before the grid placement, it was suspected that the seizures began in the temporal lobe of the brain, and that a likely approach would be to identify the very specific area of origin, and to remove that portion. However, by using the electrode grid, they were able to determine that the seizure activity actually began next to the temporal lobe (I forget the name of the origin locale) and that they traveled immediately (in 1-2 seconds, and before any outward symptoms of the seizure are even visible) to the temporal lobe, giving a false understanding of the point of origin. He described the area as being highly epileptogenic (I learned a new word today!) or prone to being an area where epileptic seizures originate. The image that comes to mind is of the schoolroom bully, who starts the trouble, but lays the blame on an unsuspected and innocent person, who then gets punished for their supposed activity. They also learned that Adam's language center is right smack dab next to the point of origin...too darn close to attempt any removal. Years of seizures playing out in the temporal lobe have affected and damaged that area (the surgeon's words were "pounded on"), which also led them to believe that was the point of origin. Disheartening news, but information that could not be gained in any of the other neurological tests.

So...in a conference today with the epileptologist (neurologist specializing in epilepsy) and the neuro-surgeon, we learned of their suggestion of a Plan B. Since the damage removal option could no longer be considered, they suggested a different procedure: Multiple Subpial Transections (MST). This is a new-ish (just over 20 years old in experimental usage, only about 5-10 years in more routine usage) procedure, but with a good track record. It is not uniformly successful, and the capability of predicting which candidates have a better prospect of success has not yet been developed. For this procedure, instead of removing anything from the brain, they make a series of small, shallow cuts that interfere with the movement of the seizure activity from one area to another. Back to our school yard analogy, suppose our bully tried to start some trouble, but couldn't find anyone to tell about it? The activity would just dissipate without making it into anything larger. Or as my dad frequently told us..."it takes one to start something, but two to keep it going." A seizure impulse that can't get anyplace else involved is much smaller and less effective...or so it seems at least for some people. This isn't the preferred method for epilepsy surgery (at least by our neuro-surgeon) since less is known about it in terms of identifying good candidates, predicting success, etc. In fact, he described it (along with other current neuro-surgical procedures) as somewhat of a "gladiator" approach, which I took to mean less refined, less specific, etc., and the possibility certainly exists for much more elegant solutions in the future that would involve less trauma to the brain. He would not be likely to even recommend this procedure in Adam's case except for the fact that the second surgery does have to happen...if only to remove the electrode grid. Adding this procedure only adds about 15 minutes to the length of the surgery, adds minimal additional risk, and does bring with it the possibility of improvement of seizure control, frequency, strength, and may also lessen the amount of medication that Adam needs to take.

We'll talk to Adam about it this afternoon (he was asleep during most of the conference)and decide between now and tomorrow morning what we are going to do. At this point, both Brian and I are leaning clearly to including this procedure, but we will get Adam's take on it, too.

Another point that came out in the conversation was the mention of Deep Brain Stimulation (the procedure/surgery that would be working towards relief of Adam's dystonia), and they mentioned that a wait of around six months would be the appropriate time frame to let the brain heal up before submitting it to another procedure. This was really nice information to gain, as we had not yet been given any information about the timing of these various procedures.

Lots to think about today! Keep sending those positive thoughts as we wrestle with this decision.

Day Two - Recovery from day one

Here's a outside view of Cook's Children Medical Center at night. It is really a top notch facility. That I hope you never have to visit. This is along my 2 block walk from the Ronald McDonald House to the hospital.



Here is Adam on Tuesday morning. He is still in ICU here. He was still going in and out of sleep a lot at this point. This wasn't too long before his first seizure at 10 AM. He has since had a second seizure at about 3:30 PM. It is looking pretty likely now, that phase II of the surgery will be on Friday. That is about as early as it could be and means we might be headed home before the weekend after next, which would be great. Adam perked up quite a bit more this afternoon, but was pretty much ready for a much longer sleep by about 8:30-9 PM.

First seizure.

Adam had a seizure at 10 AM this morning (Wed, Nov 2). Normally not something to cheer about, but we were very relieved at this point. One of the things that can go wrong in this whole process, is that occasionally the act of putting the wire grid directly on the brain in and of itself stops seizure activity. They have had kids that were having daily seizures, even with meds, and then with the grid implanted the seizure activity stopped. A couple weeks would go by and they would have to just give up and go back in and remove the grid (it can't just be left in), at which point they were back to full seizures again. They need the seizure activity to get the data to proceed to the next step.

Evidently, with the wire grid in place they can actually induce a seizure, but the data from that is a lot less likely to be useful. So we are hoping for natural seizure activity and we have our first! The EEG traces from these will help localize the damaged area well enough that they feel confident to go after it in phase II of the operation.

Day One...A Success

We're now settled in to the ICU, Adam is resting and/or sleeping, and Brian has headed back to the Ronald McDonald House for the night. It has been a full day, and we are all fairly worn out. Adam did great during the surgery, and is starting to feel a little more normal as the effects of the anesthesia are dwindling. He was able to manage a few sips of water, which is his first intake of much of anything in over 24 hours. Later he may even be able to branch out to some other liquids...life is good!

Tomorrow we will most likely be moved to the Epilepsy Monitoring Unit--same place we spent a week last summer as they hope to catch seizures with the newly placed electrode grid. Depending on how quickly they can capture the needed data, the follow-up surgery will take place as early as Thursday or Friday. We will then likely stay on-site another 3-5 days following the second surgery. Home still seems a long way off, but having this first surgery behind us is a huge landmark!

We will be keeping you posted on the progress over the next few days.

Once again, I want to make sure that everyone knows how important it has been for us to know how many people have been pulling for Adam and the whole family as we move through this adventure. Knowing that you were sending your love and your thoughts and your prayers during the day helped in ways that I cannot fully express. You are all very much appreciated!

I'm going to sign off for tonight, and promise to get back to some additional (and promised!) information such as the brain quiz and additional Fort Worth activities. With sincere love, affection, and appreciation,

the Kaney's

Success!

All has gone well...a little slower than originally thought, but we're flexible! We haven't seen Adam yet...very soon. Have talked to the surgeon and all went as expected, no surprises. Will post more soon!

I Vant to Test Your Blood...ah, ah, ah (imagine stereotypical Dracula voice)

So...what better to do on Halloween than to have some blood drawn for testing????? It seemed appropriate!

But, I'm getting ahead of myself. Run down of today's activities...left the house at around 7am, dropped the dog off at the kennel, headed down the road to Fort Worth. We arrived in plenty of time to check in early for the pre-op appointment, answered many questions, heard much information, signed many forms, got blood drawn for testing, and received instructions for Tuesday. We were pretty excited to learn that we have been given a couple of hours reprieve on our check-in time--don't need to be at the hospital until 7am! Sounds much nicer than the original plan of 5am.

The plan for tomorrow will be to have the prep work begin at 7am, surgery will likely commence by around 9am, and last 3-4 hours. This surgery is part one...the placement of the grid of electrodes to do more extensive brain mapping. Once out of surgery, he is scheduled to spend the first night in ICU.

He will be off of his seizure meds, so just like last summer at the Epilepsy Monitoring Unit, the goal is for him to have seizures and collect data in order to plan the next phase. Depending on how long it takes to gather the needed data, the second surgery could happen as early as Thursday (not super likely) but it has tentatively been set for Friday (assuming enough data has been gathered).

The second surgery will involve removing the electrode grid, as well as addressing the issues that they find. Most likely scenario is that they will be removing the small damaged portion of the brain. Following the second surgery, Adam will likely remain in the hospital for 3-5 more days to recover and get stable enough to head home.

We'll be updating as we know more, but this gives you a rough idea of what is coming.

We do have a room at the Ronald McDonald House again for this visit, and if anyone would like to send a card, the easiest path is to send it there.

Adam Kaney, rm. 213
Ronald McDonald House of Fort Worth
1004 7th Avenue
Fort Worth, TX 76104

We did get to do a couple of fun things today...the following photos are from the freshly unveiled Lego model of the Cook Children's Medical Center. Very cool and very recently completed, so we timed that right! We also explored the historic part of Fort Worth, but I'll save that for another post.

Ready...Set...Go!

On October 29, we held our pre-brain-surgery party with appropriately themed food and activities. Several of our friends were able to join us for a festive evening, which gave us fun things to think about rather than worrying about packing and preparing for a little while.

One of the activities was a brain quiz (we'll post it soon for those of you not able to join us!), but the highlight of the evening was the preparatory hair cut. Adam chose to have his head shaved even though the surgeon had told him that although it made things easier, it wasn't absolutely necessary. I think that it had something to do with the fact that the eventual scar will show up ever so much better with less hair to obstruct the view!

At any rate, Adam chose to make the hair cut part of the activities, and everyone who wanted to participate was invited to take a pass or two with the hair clippers. You can see from the photo below that Adam was thrilled to be taking part in this activity!



And here is the new look!



Some of the spooky party food:



The "brain" jello...



...and Brian's birthday cake!

FAQs/Adam's 1st post

This is my 1st post on the blog. With the surgery just around the corner, I decided to answer some of the questions that I get a lot. If you think of a question that isn't here, ask away!

1. When is the surgery?
Phase 1 will take place November 1. Phase 2 will take place shortly thereafter.

2. Where will it be?
Cook Children's Medical Center, Ft Worth, TXhttps://www.cookchildrens.org/ForPatientsFamilies/MedicalCenter/Pages/default.aspx#1

3. How long will your recovery be? When might you be home again?
The recovery time at the hospital could be just a few weeks, followed by several weeks of resting at home.

4. What is going to happen during the surgeries and hospital stay?
I don’t have the clearest idea now. See Q8 for more info.

5. What do you hope will change after the surgery? Best case scenario?
Significantly less to no medication is what I’m hoping for.

6. Will you have a killer scar to show off?
Heck yeah!!!

7. Are you worried about the surgery?
Not really. Things like this just don’t faze me that much for some reason.

8. Where can I read more about this type of surgery?
I just do a Google search for epilepsy surgery. These are a few I’ve readhttp://www.epilepsy.com/epilepsy/journal/issue1/surgery?gclid=CIaZ_v3x-qsCFQPs7QodHTBOmg http://www.epilepsy.com/EPILEPSY/surgery http://en.wikipedia.org/wiki/Epilepsy_surgery

9. How many lattes do you think that your mom will buy while you are at the hospital?
My guess is between 5 and 8 per week.

10. What are you looking forward to doing once you are home again?
Starting to get off my medication.

11. How will you and your parents pass the time in the hospital?
We will have our laptops with us, enough said.

12. Do you have any plans for future surgeries?
Deep Brain Stimulation (DBS) will be in the works as soon as this 1st surgery is done.

Plans, plans, and more plans!

By now, many of you may have heard that the date for Adam's upcoming surgery has finally settled into place. Originally, we thought that the optimal plan was going to be for Adam to complete his freshman year of college and then proceed with the surgery in the summer. Next plan was for Adam to complete fall semester and the surgery was scheduled for Jan. 10. But...we Kaney's don't like to take the boring first or second plan...instead, to keep things interesting, we came up with a third plan! The magic third plan (which we think that we are sticking with!!) is for Adam to take a hiatus from college, and the surgery is now scheduled for Nov. 1!

Now, the pre-op appointment just happens to fall on Halloween, so we've had a lot of fun thinking about all of the connections (or possible connections) between brain surgery...Halloween...ghouls...zombies...well, you get the idea!!!! To celebrate those connections, just have fun, and set the tone for our trip to Ft. Worth...we're going to hold a brain party on Oct. 29 before we head south. The fact that Brian's birthday is the next day (Oct. 30), makes this the perfect opportunity for a dual celebration of Brains and Brian! So it will be a Brainy/Briany party with jello made in a brain shaped jello mold (of course we already have one...don't you?), and Adam head shaving (with everyone taking a pass with the hair trimmers if desired), and other general silliness!!!!

If you're in the area, please come by! Pictures will most definitely follow.

Next step

Today we heard from the neurologist at the EMU in Ft Worth. It wasn't a long conversation, but they want us to come down to talk about options. We have an Appt. Aug 8. The upshot is that they thought Adam could benefit from surgery, but there are still questions. They would want to do more mapping of brain areas, perhaps in a surgical environment. We'll post more when we know more.

There's no place like home!

Sorry for the absence of a blog entry on Friday, but it turned into a busy day! The day started at 6:30am when Adam's EEG leads were removed. What a wonderful feeling! He then had a PET scan (no breakfast prior to the scan), and then a functional MRI (much like a regular MRI, but they ask to you do specific tasks so that they can track the specific area of the brain that is in use). We got back to the room around 11:30 to an only slightly cold breakfast tray still waiting. Since he had missed breakfast, Adam was very hungry, and his tray was emptied quickly, and only a few minutes before the lunch tray arrived! Lunch disappeared just as quickly, and then off for a traditional MRI. There was a short consult with the Doctor, where we learned that they didn't have all of the test results back so couldn't really tell us anything yet (wait a couple of weeks--we'll get back to you), and then a two hour wait until the discharge papers were ready.

This put us on the road out of Fort Worth just as rush hour was starting, but nothing could deter us from making our way homeward. It felt good to sleep in our own beds again, and to start catching up on Saturday morning.



As you can see, Dr. Monkey is already getting to know Holly, and from what I gather, is contemplating adding a veterinary piece to his practice.

Thank you for keeping up with us throughout our adventure--we'll keep you posted with the follow-up information!

A Sausage McGriddle on your pillow every night

Well, not really. On Tuesday, when the insurance stuff blew-up, the hospital arranged for a room at the Ronald McDonald House a block or so away. Even though we haven't been discharged from the hospital the social worker said that it is common to have both if more than one parent is staying with the patient. The hospital room is really set up for just one extra person to sleep over. The 2nd parent gets a chair that looks harmless in the daytime, but revealed a much more evil side overnight. It was a notch up from sleeping in an airline seat, but not much. So I have been sleeping over in the RMH.

The first picture is the entrance. It seems like a nice place. I've only been there to sleep, so it is pretty quiet when I come and go. Sort of a cross between a hotel and borrowing someones apartment. You need to clean the room some when your stay is over, but your checkout is 'until you no longer need the room'. There are a number of large nice common areas with TV's and games and such. There is a huge kitchen area as well, with frig and freezer space for each room and a large common food area as well. There are cookies and snacks and a food pantry for communal use. Volunteer groups come in and serve dinners some nights.

Second picture is the room. A pleasant 'motel with no decor' feel. A mixture of slightly out-of-date appliances/electronics. They rely a lot on volunteers, and donations of services and items. Since we were a last minute addition we got a room that was scheduled to be painted and since they knew I wasn't using it in the daytimes, there is a crew of volunteers there painting it now. So Paisley dreams tonight.

Out and About

Since we had a quiet day scheduled today, we were given leave to step out of the room for 30 minutes!!! We headed outside, since it was a beautiful day, and since Dr. Monkey really wanted to show us around the Garden and Labyrinth.

Heading out for Adam's (and Peggy's) first out-of-doors time since Sunday morning.

Dr Monkey relaxes briefly in the topiary. You can take the monkey out of the jungle, but you can't take the jungle out of the monkey.

Dr Monkey showing us the 'enormous two story fountain'. I didn't want to break it to him, so I kept quiet. But a nice fountain anyway.

At the center of the labyrinth!

Evening Report

We are still at the hospital, and it appears that we will be staying put until all of the testing is completed on Friday. This was the original plan...which was off for awhile after the hospital and the insurance company had different ideas about what was really supposed to be happening this week. Much negotiation time later, Brian has a room at the Ronald McDonald House, which means that neither of us has to sleep in a chair in Adam's room, and Adam will remain on in-patient status for the duration. Whew!

The day was also productive from a testing standpoint. As reported earlier, the SPECT inter-ictal scan was successfully completed this morning, followed by a full day of neuropsychological assessments. The main activity tomorrow is to be on a special diet for one of the Friday tests--other than that, we may unplug for a break from the EEG feed and stroll around a bit. I'm thinking Starbucks for a latte mid-afternoon. Mmmmm...or maybe a frappuccino. Choices, choices!

And, there is a very real possibility that we will need to follow Dr. Monkey around on some rounds, as well. Stay posted!

The new adventures of Dr. Monkey

Dr. Monkey checks out the schedule for the day...many things to take care of for his favorite patient, Adam Kaney. Nothing like a little caffeine from Starbucks to help focus the razor-like primate mind.



On their way to the Nuclear Medicine facility, Dr. Monkey carefully explains the procedure that is about to take place.



To make sure that Adam won't be afraid, Dr. Monkey demonstrates the correct way to position oneself on the machine. Due to his diminutive size, Dr. Monkey barely fits on the table!



Fortunately, Adam fits much better. Dr. Monkey checks to see that Adam is positioned correctly before the test begins.



All through the test, Dr. Monkey keeps a careful eye on Adam, and works to comfort Adam's dad, as well. Dr. Monkey understands that taking care of the patient means taking care of the whole family!



What will be next for Dr. Monkey? Check back later for the further adventures of Patient Adam and the indomitable Dr. Monkey! They will drive you bananas!!!

Some things change, some things stay the same

Well...it was an interesting day negotiating with the insurance company with the result that Adam will stay as an in-patient for at least one more day. That will be really helpful, as the Wednesday activities with the neuropsychologist were going to be the most difficult to switch over to an out-patient status. So, Wednesday will start with an inter-ictal scan (the companion piece to the ictal scan--this time without having to catch a seizure), and then Adam will spend the rest of the day with the neuropsychologist. They want to establish a baseline in case surgery is determined to be the treatment path that is eventually pursued.

During the time that we were trying to figure out if we would stay or go (which consumed most of the day), arrangements were made for us to stay at the local Ronald McDonald House which is within walking distance of the hospital. We decided to go ahead and take the room, as it would allow us to have one parent in the room with Adam overnight, and one at the Ronald McDonald House. That way neither one of us will need to sleep in a chair tonight (we've each had a turn at that already), and if we move tomorrow, we'll already have that arranged.

So we shall see what new and exciting things will occur tomorrow. Stay tuned, as it may be possible that Doctor Monkey will make a repeat appearance! Until then...

Doctor Monkey to the rescue!

Oh no! Things are falling apart in the EMU! Patient Adam Kaney comes to the rescue by briefly running away from the confines of his room to locate the all important new staff member who is capable of saving the day...Doctor Monkey! Adam found him relaxing at Build-A-Bear, and quickly let him know of the work that needed to be done!



Adam convinces him to change out of his civilian clothes (can you tell he is an OSU fan just like Adam?), and to get ready for his real job.



Quick, Doctor Monkey--this patient needs to move quickly to surgery!



Adam watches from the room as Doctor Monkey moves the patient (Prayer Bear) out of the room and moves toward surgery.



Another crisis narrowly averted thanks to the fast thinking of Adam and, of course, Doctor Monkey!

It's a beautiful day!

There is nothing like a good night's sleep to make the day look brighter! Since we're not sure yet what today will bring (may be moving to a different lodging option), thought I'd give you a peek out of our current window.



In this view you can just see the skyscrapers of downtown Fort Worth.


We'll be learning more later about what to expect today and for the rest of the week and will happily provide that information for your reading pleasure!

Days or Daze

I think that this picture gives a pretty good sense of our day...exhausting, overwhelming, and in desperate need of a hug! Adam is holding his "Prayer Bear," a kind of cool tradition of caring provided by the chaplain's office. So how did we get the point where we are all wanting to cuddle a snuggly toy? I'll give you the run down of the day.

The points that led up to our current state began yesterday. Since a significant part of this experience is to have one or more seizures while hooked up to an EEG, the staff here are very interested in any triggers that are known to encourage seizure activity. With Adam, a couple of reliable triggers are missing any doses of medication and exhaustion. So...first thing was to take him off his meds, and then to also think about sleep deprivation.

One scheduled test was to do an ictal scan that involved injecting Adam with a radioactive isotope during a seizure, followed by a brain scan. The trick is that the isotope has a limited useful lifespan, and so to work, Adam must have a seizure during a specific timeframe--in this case, between 8am and 2pm on Monday morning. Our challenge was to try to second guess how quickly after eliminating meds and depriving sleep would Adam go into a seizure. Easy, huh? Not surprisingly, we didn't get it just right, and his first seizure came shortly after he went to bed Sunday night, at around 10:30pm. No problem, we thought, we'll just get him up extra early, and hope for a second event on Monday morning. Adam woke up by himself earlier than we had intended, and he had a second seizure Monday morning at 6:30am. A little more worried about hitting it now, we went for exhaustion in the form of playing Wii games in the room, and fortunately he had an additional seizure at noon. Whew! Isotope injected, scan completed, test successful! But now, Adam is truly exhausted (and still off meds), and so has an additional seizure at 5pm before meds are restarted. As of this writing (7pm), he has had his first dose of meds, and is sleeping very soundly!!! What a crazy work-out routine!!!

We also had our first visit with the neuropsychologist, and got the schedule for testing for the remainder of the week. Only snag is that things have not worked out as anticipated with insurance, and so we may be relocating our sleeping arrangements and completing the tests as out-patients. Good and bad to that...on the up side--if we do end up relocating, our time is a lot less scheduled or controlled when we are not involved in tests and we could explore the city a bit more, but on the down side--if there are any problems in the off hours, we are on our own. Frustrating since we had talked to all of the parties involved prior to coming, and were assured that all paperwork was in order. Ahhh...modern insurance/healthcare. Gotta love it!

See why the picture fits our day pretty well? We could all use a hug or two...and a friendly bear showed up at the room to serve that need. And, Brian scoped out the Build-A-Bear Workshop downstairs and it turns out that they have a monkey (Adam's all time favorite animal), so we may take a detour to that store at some point during the week. And I must admit, I did start my day with a caramel latte from the downstairs Starbucks (thank you, Brian!) so the day has had some bright moments!

All in all...a mixed emotion kind of day. Good...but exhausting. Thanks for reading this far and keeping us in your thoughts...we truly appreciate it!

Learning the routine

We got checked in at 9:00am, and have spent the day settling in to our life for the next week at Cook Children's Medical Center. It will be a full week, with various tests that will hopefully lead to a clearer understanding of our treatment options from here forward. So...to give you a taste for life on our first day, a few photos--starting with our schedule board in the room:



The next three are a progression of Adam's changing "look" throughout the day as he relaxed, and then got fitted with EEG headgear to wear for the next few days. The goal here is to capture as much information about what is going on in his brain during the seizures.


Mid-morning...chilling with a beverage, and lots of instructions and procedures to learn.


EEG leads glued to head, check. Multiple arm bands with useful and necessary information, check. Let the fun begin!


This last shot captures him at the end of the day, relaxing and enjoying a movie. The room is set up with a TV and DVD/VHS player, and even a Wii. We may play that tomorrow. As for me, I'm planning on treating myself to a latte from the Starbucks on 1st floor, and we're going to scope out the Build-A-Bear Workshop...also on the 1st floor of the hospital! This place has it all!!!

On the road...off the road

Following a fairly uneventful drive, we settled in to our hotel (about a mile from the hospital) and headed off to find some food. Based on a recommendation from Pat Poulter, we dined at Joe T. Garcia's as we did last March when we first traveled to Fort Worth for an initial appointment.



Joe T.'s is a Fort Worth tradition--serving family style Mexican food since 1935. The last time we were there, we went for the traditional Mexican dinner...this time we branched out and enjoyed the fajitas. Both are delicious...and we recommend that you try eating at Joe T.'s if you are ever in Fort Worth!



As you can see...Adam clearly approves of our selection of dining establishments!



We will be checking into Cook Children's tomorrow morning--you can watch the video on the Epilepsy Monitoring Unit on their webpage if you are curious about this process. We'll get a better sense of what to expect after we get checked in, and we will be glad to share that information with you!

Something about this is familiar...

In what feels a bit familiar, we will be heading out tomorrow to Ft. Worth, TX (are there any other Ft. Worth's?) for a stay in the Epilepsy Monitoring Unit at Cook Children's Medical Center. Those of you who have been with us throughout this journey may recall a similar trek in 2008 to Memphis. If you are joining us fairly recently, you can look back at the posts on this blog to that time period to get a preview of our upcoming week! Although the length of the stay or the specific tests may not be exactly the same, we anticipate a similar experience.

The goals this time are a little bit different...our original trip to Ft. Worth in March was to meet with a movement disorder specialist (a specialized neurologist) to talk about possible directions that might be considered for Adam's dystonia--specifically, Deep Brain Stimulation surgery. However, before we can go further into that possibility, we need to make sure that there is nothing surgical that should be considered as a response to the epilepsy. (That was one of the possibilities being considered and ultimately set aside during our Memphis trip.) So...three years later, different doctors, different city, different hospital...we'll do this again. If it turns out that the feeling is still that surgery is not the path to address the epilepsy, then we will move forward with considering other options (possibly surgical) for the dystonia. We are hopeful that this week will bring new ideas for treatment...but if not, at least a confirmation by new faces that we are doing all we can do at this time.

So...today we finish packing up, tomorrow we drive to Ft. Worth, and Sunday we check in. Stay posted for updates, and feel free to comment freely...it keeps us connected and encouraged!