Thursday was a big day!

Just a few hours into our morning, and we found ourselves getting closer to the answers we have been searching for.
Our first visit from a doctor this morning (Dr. Lee-Messer) revealed that after Alex went to bed Wednesday night (early Thursday morning because she was trying to become sleep deprived), her EEG showed some abnormal "epileptic" activity. This was the first evidence to the Stanford team that she was suffering from this issue, in addition to the non-epileptic seizures that the tests revealed yesterday. This helps to add more depth, and possible answers, to what Alex has been dealing with for years.
Then around 930am, Dr. Barry visited us and worked with Alex again on her non-epileptic seizures. Allison & I were able to witness as the doctor talked her through a seizure from beginning to end. Although Dr. Barry is very optimistic about Alex's ability to train herself to minimize or eliminate these types of seizures, she is quite nervous and apprehensive now that she knows they can come on so easily. She is also feeling very frustrated about having these non-epileptic seizures and now thinks that it must all be in her head. Dr. Barry assured her that these seizures are are more common than people think and that even though the goal is to exercise her brain and reteach it how to handle these episodes, it all happens in our subconscious and at a level that even the experts have little explanation on.
The day progressed, we spoke to the doctors more frequently and they agreed that they had all the info they needed and it was fine if we went home. Now all that had to be done was an IV dose of meds and a long shampoo job to get rid of the glue in her hair from the sensors, then we were on our way home!
Here's the net result (as well as we know it now):

• EEG's show abnormal activity, and when paired with the history and description of her earlier seizures, gives us the conclusion that she has had epileptic seizures (tonic clonic or grand mal).
• The hyperventilation & strobe tests along with hypnotherapy exercise revealed to us that her more recent seizures have most likely been of the non-epileptic type.
• Dr. Barry worked with Alex on ways that she may be able to minimize the effects of the non-epileptic seizures.
• They are slowly going to phase in a different anti-seizure med while tapering her off the old one. We will be watching this closely for side effects or other issues.

Overall, it was a great experience and with the help of this great medical team, we feel Alex has a really good chance of putting this behind her, sooner rather than later in life.

Thanks again to everyone for the love, support, prayers, kind words and well wishes. It never went unnoticed or unfelt.

With love,

KAAL

More tests, more seizures.........

Greetings from F324.
After our visit to assist Fred, we ventured to the cafeteria for lunch. As we grabbed our tray, we received a text from Alex saying that the doctor just got to her room and was ready to do the testing we had been waiting for. We hurried upstairs then waited patiently while she prepared Alex for what was going to happen.
First was the hyperventilation test, where Alex was asked to quickly breathe in & out for 3 minutes, in an effort to stress her system. She completed that test with no adverse reaction. Second was the strobe test, which turned out to be far less of a 70's disco/strobe-light scene than I thought. The doctor simply put a small strobe lamp in front of her face, asked her to close her eyes, then flashed it a dozen times in her face. As the doctor was asking Alex to open her eyes for another sequence of flashes, Alex started to convulse and it became clear that this test was providing the desired results for the doctors. As a team of doctors/nurses came charging in the room, our nurse took over and quickly gained control of things. She patiently talked with Alex as she continued to convulse for several minutes, and Alex remained slightly responsive during the whole episode.
She is doing much better now, but for good reason she remained very tired through the afternoon. They are going to try a sleep deprivation test tonight and then Dr. Barry will be back at 830am tomorrow for more work.

Thank you for all the love and support.

KAAL

Fred's advance directive

Earlier this afternoon, Allison & I left Alex's bedside, in search of a grilled cheese sandwich and fresh salad, downstairs at the cafeteria. As we approached our destination, we could hear the beautiful sounds of a "Celtic" ensemble playing some beautiful music in the courtyard below us. As we paused for a moment to listen and relax, we were approached by a doctor named Milton and he asked us if we would be willing to witness for a patient, as he signed his advance health care directive. We of course agreed to assist, and were escorted to the Blood & Bone Marrow Transplant unit, where we washed up before meeting the patient. Fred was a very nice man, above average build, looking reasonably healthy and having very little hair (probably more a medical issue than a genetic one). He greeted us warmly and shook our hands with warmth and sincerity. While signing the forms, we talked briefly and found out that Fred and his wife were from Salinas, but had recently moved to Palo Alto so they can stay within the "circle of care" (close proximity) to Stanford.
We did not ask many questions, nor was anything explained to us, we simply did what was asked of us and shared a quiet, personal experience with a man we had never met.

During life's special moments, we are gently reminded that there are no coincidences.

Everything happens for a reason..............

Wednesday morning

After an uneventful yesterday, Alex has had several visits from her doctors this morning. They explained that her EEG results have been normal so far, but that was to be expected considering her seizures are so sporadic. During the most recent visit by Dr. Lee-Massey, he told us that today they would try to induce seizures with strobe lights and hyperventilation techniques. More on that when those tests take place.
About 2 hours ago, we received our first visit from Dr. John Barry. He is a world-renowned expert in the study of psychiatry/seizures/epilepsy and how they relate. He met privately with Alex for about an hour and worked with her through some hypnotherapy techniques. He was able to to bring on some seizure episodes and will come back tomorrow morning for more tests (with us present).
We will have more to report throughout the day and the balance of the week, and will keep you posted along the way.

Love,

The Browns

Day ONE

Welcome to Stanford

Al & al in waiting room


Alex taking time out for a new hair-do in the room

Alex was thinking about taking up synchronized swimming with this new look

Let the fun begin!
We got off to an early start and arrived at Stanford around 830am. Allison got Alex checked in while I parked, then we got her up to her room.
Soon after getting settled in to the room, we were greeted by two great doctors, who will be caring for her most of the week (Dr. Fisher & Dr. Lee-Massee). They asked a lot of questions, made a few basic assessments of her history and told us that besides stopping her meds, there would not be much done today. During this time, Alex was fitted with 26 EEG sensors that were glued to her head, then they outfitted her with an awesome purple headdress (she is stylin!). The EEG is running round the clock, along with video and audio surveillance. This will allow them to go back and study any signs (neuro, video, audio) that may help hem determine the root of the problem.
We talked about some of the things they feel they might do over the next few days, in order to initiate an episode (seizure). This could be a vibrating tuning fork on her forehead, strobe lights, overheating, hyperventilating and more.
So far so good. I am heading out to the local deli to get her a turkey sandwich, since the hospital food is not what she is craving.

Thanks to all for the outpouring of love & support.

KAAL

Heading back to Stanford......

Luke with friends on his 17th birthday!

Luke with RHS B-ball team after a great win in February.

Luke & Brooke before the Sadie Hawkins dance.

As the family scurries around making last minute preparations for another trip to Stanford, I thought we at least owed everyone a post-December update on Luke.
He is doing FANTASTIC! His lungs are working great, he has put on most of the weight he lost while at Stanford and his social life has been as busy as ever.
As the Director of Basketball Operations for the Ripon High School Boys Varsity Basketball team, he helped lead them to the Sac-Joaquin Section Division-IV quarterfinal playoffs. Additionally, just last week he was the "McManager" of the Ripon High McBallers Dodge Ball team and he helped lead his team to a finals victory! He had a fun birthday party in February and also just attended the Sadie Hawkins dance last week with Brooke Bigelow (they both supported the "Super Hero" theme in their Batman shirts).
You'll never hear the Brown family say that last December was easy, but we will tell you that we were blessed. The blessings were not only seen in the speed and simplicity of Luke's recovery, but in the love and support that we received, and continue to receive from family and friends.

Thank you all.

Love,

KAAL

Home at last..........

We are finally home!
Luke was released from the hospital Wednesday afternoon and he made it home after being in the hospital for 3 weeks.

He has some stitches to get out next week and a surgical follow up in 2 weeks, but otherwise he is doing pretty good.

Thank you for all the prayers....we felt everyone's love and support more than you know. We could not have done it alone.

KAAL

So close, we can taste it!

The Dr's just came in this morning (following a "stat" 6:45am xray) and said that things look good. They are waiting for a final report from radiology, and assuming that they concur with his Dr's, we will begin the hospital discharge procedure. There is no visible pneunothorax (collapse) of his lung, although they did say that his left lung remains a bit shy of 100%; due to the stapling that took place near the apex. They did say however that the lung may gain some of that capacity back, as he gets active again and his breathing improves.
If all goes well, we hope to be home this afternoon!

More to follow.

KAAL

No more chest tube!!!

Moving at a slightly quicker pace than we had expected, the Dr's came in this morning and removed Luke's chest tube. Even with a dose of drugs, it was a painful process, but one that we are all very glad that it took place so soon. There was another chest x-ray done today and we expect that there will be another one taken in the morning. Assuming that all goes well, it looks like we will be heading home sometime Wednesday.....finally!!!!!
Stay tuned for more details.

KAAL

More pictures

Alex w/ Ike Holt

Grandparents w/ new helmets for their off-road "Razr"

Grandpa w/ Christmas present

Grandma w/ Christmas present

Luke w/ you know who

Here are some additional pictures from our stay at Stanford.

KAAL

The Home Stretch

The Waters family

Nick, Nick, Emily & Mom

The Herrins & Lisa Cardenas

Allison's new Christmas tray

Grandma & Grandpa

Well, a lot has happened since the last entry, so I will do my best to catch up.
In the previous Christmas Eve post, it left out our evening visitors, who helped to make the evening very special. Our friends, the Herrin family & Lisa Cardenas, came out to see Luke and along with my parents, Owen & Carol, we enjoyed a very wonderful Christmas Eve together.
Luke remained in a fair a mount of pain on Christmas Day, but we could see some improvements and his lung remained leak-free.
Sunday was a fairly quiet day, with a lot of rest, some football watching and more visitors (thanks to Luke's friends Nick, Nick & Emily as well as the Waters family).
At the end of the day, Alex left with my parents to head back to the hotel for a good night's rest, and before they could get to the elevator, she had a seizure. To say the least, it took us all by surprise. But it goes without saying that if you are going to have a seizure and you want immediate medical attention, have one in the hospital. Also, make a note that if you want to be surrounded by a lot of doctors and nurses quickly, just shout Code Blue a few times, late at night in a hospital.....that seemed to work pretty well.
They rushed her down to the ER, where a series of blood & urine tests were done, an xray of her neck (she was in a lot of pain) and once everything checked out and she was stable, they released her. We took her back to our home away from home (room #3525), and she has been resting since.
This morning, grandma & grandpa came back by to check up on the kids, before they headed home to SoCal. We really enjoyed their long visit up here (since last Thursday) and we really appreciate their help in making Christmas in the hospital a special and memorable occasion.
The Dr's finally turned Luke's suction off today and things continue to look good there. We will remain on this course until Wednesday, when they will finally remove the chest tube altogether.

This has been an unbelievable journey for all of us and I know there will come a time when it will all make sense. We are really looking forward to coming home and helping Luke to enjoy the remainder of his Christmas break.

Thank you for all the support!

KAAL

Christmas Miracle!

For the 1st time in 2-1/2 weeks, Luke's lung is not leaking!! Last night, we could see over the course of several hours, that the leak was becoming less noticeable. But when we got up this morning, there were no bubbles and when the surgeons came in, they smiled and said that it was the Christmas miracle they (we) were all hoping for.
We have about 48 more hours on suction to make sure that the leak is gone, then another 48 hours on water seal, then I believe we can think about coming home.
We have enjoyed our "makeshift" Christmas here in the hospital today. We started with hot cocoa and some donuts & pastries. We then opened presents with grandma & grandpa (Owen & Carol); all the while Luke was struggling with his pain. They gave him Oxycontin for the first time today, and he has been able to sleep better than ever; and we are thankful he can get the rest.

Thank you all for the love, support, prayers & visits.

KAAL

Christmas Eve

A little Yuletide cheer

Holiday snack buffett

Carolyn Lewis working her magic on Luke's aching head.

Glen & Carolyn Lewis

Steve & Braiden Young

Matty & Seth's visit yesterday

Today has been a busy day so far, with our main focus being Luke's comfort and pain control. Things are looking up after the surgery and not only is the leak in his lung way less than before surgery, but it looks a tiny bit better now than it did last night.
There have been some wonderful Christmas Eve experiences so far. Earlier today we heard some beautiful Christmas music coming from a harpist and a family musical ensemble, out near the nurse's station. Luke's grandparents (Owen & Carol) have been here since last night, Brad & Quinton Ambridge as well as Glen and Carolyn Lewis came to visit, along with a surprise visit from Steve & Braiden Young (thanks to Susan Miguel).........not to mention the one & only Santa Claus!!!
Luke remains incredibly strong, in spite of his pain & discomfort. We are so happy that things went well last night and we are very hopeful that he will make a full recovery.

Thank you for the continued love & support.

KAAL

Surgery is done!

Finally around 8pm, the surgeon came in and talked to us about the long surgery. She said that she spent the 1st hour looking for the hole in the lung, then a 2nd hour separating the upper part of the lung from where it had stuck to the chest wall after the pleurodesis that was done on the 12/13/10. Finally after those 2 hours, they found the problem; a 3mm to 4mm hole in his lung. They spent another hour or so stapling that area and making sure that they do their best to close things up, but they couldn't get too aggressive because it was getting to close to certain critical parts of the lung. They also found a couple of small blebs on the lower portion of the lung, but their size didn't warrant stapling, so they put some sort of plasma gel (glue) on them. They also put this "glue" on most of the staple points along with any other weak spot on the lung that needed it. Afterwards, they introduced the inflammatory agent (talc) into the lung, to initiate the pleurodesis. She said that it should stick great, because they put a lot in there.
When they were re-inflating the lung after surgery, they said they had a couple of minutes with no leak, but they also observed a small air leak later. We can easily notice that the air leak we see in the water seal device, is greatly reduced from before and we're hoping that it will clear up completely during the healing process.
Best case scenario, Luke will need about 3 more days on suction and if the leak appears to go away, then he will go on a different water seal tube (no suction) for 2 days.

We're very thankful that things went as well as they did, and we can only hope and pray that things will improve from here.

KAAL

Thursday, 7:30pm

Still in surgery. He has been in for nearly 5 hours. Last word was that he was stable, but no word on how long things would take.
More to follow.

KAAL

Thursday, 2pm

We are down in pre-op right now, waiting for Luke to be taken in to the O.R.
We have all decided that a 2nd surgery (3rd if you count the 2nd chest tube) would be the best choice, considering the lack of improvement in his condition. We are hoping that the Dr's will find the source of the leak, and that they'll be able to fix it permamnently.

We'll keep you posted.

KAAL

Thursday, 9am

Nothing to report yet. X-rays were done early this morning but we have not heard from the Dr's. We had a nice family night yesterday. The girls just returned from their trip home, where they checked on Eeyore, did laundry, picked up some meds and caught up on some things. Once Luke was taken off NPO status, Alex & I ran to downtown Stanford and picked up some dinner at Pizza My Heart (Luke's choice). We played Yahtzee, watched some tv and enjoyed being together as a family again.

More as it happens.

KAAL

Wednesday, 7pm

Another visit from the Dr (probably the last one for the day) and it looks like nothing is going to happen today. The IR case schedule was full all day and they were trying to squeeze Luke in, and never could. They finally took him off of "NPO" status, so he is finally able to eat for the first time today....poor guy.
His spirits remain strong, but our hopes of getting out before Christmas are dwindling. We will continue to fight hard to get him healthy ASAP (that has always been our goal) and we will let the chips fall where they may.

Thanks for all the support, and please don't stop praying for him.

KAAL

Wednesday, 4pm

Just met with Dr. Gerry and we discussed Luke's CT. He said that they are pushing real hard on the IR department to get him down there and do the add'l chest tube to help fix the lower pocket of air. He also mentioned that it appears on the CT that the upper pocket of air and this newly discovered lower pocket may be completely separate, and fixing the lower area may not bring closure to the upper area.
Lots of unanswered questions. We'll just take it one step at a time.


KAAL

Wednesday, 3pm

We just returned back to the room following Luke's CT scan downstairs. Now we wait to hear from the Dr's after they consult with the radiologists. More later.........

KAAL.