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 A mixture of slightly out-of-date appliances/electronics.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!