pipebaum

It's Movember

2009-11-13T20:14:00.001-08:00

Movember, that time of year when the days grow shorter, the weather grows colder and the family gathers today for the holidays. Of course in my family the kids are looking at me and laughing, and I am getting 'that' look from Gretchen my wife.

Yes I am growing in a mustache in an effort to change the face of men's health. To quote my team lead (I am a part of Team Fat Cyclist).

"Movember is the month formerly known as November. During this month, men — manly men — grow mos as a way to call attention to themselves (hey, I’m just being honest here).

Then, when people ask you “Why are you growing a moustache?” — and they will ask you this question — you tell them about the cancers affecting men, and ask them to donate to your Mo donation page (the money will be channeled to the Prostate Cancer Foundation and to LiveStrong).

So really, a mo is kinda like wearing a pink ribbon for breast cancer awareness. But a lot more personal. And harder to remove. And it’s displayed a lot higher."

-The Fat Cyclist (Elden Nelson)

I hope you will be willing to support me and my team.

Our Summer Vacation Day 1

2009-06-24T20:46:00.000-07:00

Tuesday morning and we are ready to go. Bags are packed, car is ready, the kids are psyched... A few last minute discussions and we are off to the airport.

The folks at Children's have asked us to document the trip, so we have vowed to take lots of pictures. When we arrive at the airport, we meet up with Jennifer Johnson from the Children's Hospitals and Clinics of Minnesota Foundation. Better get a picture.

Jennifer is awesome, she set up the trip and took care of all our arrangements. In addition, she has worked with the local media to get coverage of our trip including:

In addition to meeting Jennifer, we met the representative from Gilette Children's Specialty Health Care Nick Nelson. Nick is a truly amazing kid with an amazing family. Nick was traveling with his mom Greta and his sister, Naomi. Naomi, a cancer survivor, has her own story. Have a look at Nick's blog for the account of his adventure.

Fortunately, the flight was short and uneventful. I am wondering how parents traveled with children before DS?

I look at these pictures and wonder where my little kids have gone and who are these big kids?

Once we made it into Washington it was a short cab ride to the hotel. For the kids, seeing all of the sites that we have been talking about was really exciting.

Look there is the Washington Monument. There is the Jefferson memorial. Then you cross the mall and see the Lincoln Memorial and the Capital.

We had concerns that perhaps the kids were a bit young for DC, but it seems clear that they are READY.

Once we made it to the hotel we had a little time for sight seeing round 1. The first order of business was to make sure that the cameras were working and ready for action. Both Sam and Louise have their own inexpensive digital cameras.

It is so great that they can take as many pictures and videos as they want and we don't have to pay development costs.

The amazing thing is how quickly the kids have become good at taking pictures. Many of the the pictures you see in these posts were taken by the kids.

Sam really dove into his role as the official photographer for the trip. As we walked around, he kept running out in front of the group taking pictures. Our own little paparazzi.

We decided to tour the Spy Museum. We thought that Sam would love this museum, but the entrance was a bit dark and scary. When he begged to go to the portrait gallery we knew that we had to go with Plan B. So while Gretchen and Louise learned about spies, Sam and I set off on foot.

What I love about DC is that once you are down on the mall, it is only five minutes to something interesting. We decided to try out the sculpture gardens. The National Gallery sculpture garden was awesome. Giant spiders, cool fountains and Calder's Cheval Rouge.

We loved it.

We then met up with Gretchen and Louise had a quick dinner and it was time for bed. We needed to be ready for an even bigger day tomorrow.

Wild About Children's Video

2009-06-22T20:07:00.000-07:00

As I was getting fired up to post about our trip to Washington, I came across this post that never got published. This is from last winter (2007-2008) but it is a nice video. This was shown on the screen at the Wild game when they presented a large check to Dr. Frost and Dr. Dunn.

Pipebaum's Big Summer Trip (Part 1)

2009-06-22T17:26:00.000-07:00

Gretchen and I have traveled to Washington DC many times as both children (thanks Moms and Dads) and adults. We love our nation's capital, the monuments, the history, the parks, and all the people making things happen combine to make for a truly unique and wonderful city.

When Children's Hospitals and Clinics of Minnesota asked us to go the National Association of Children's Hospitals and Related Institutes (NACHRI) Advocacy Days with Sam and Louise there was no hesitation, we said YES in an instant. Little things like work, home projects, and summer camp would all have to take a back seat to this adventure.

This was not going to be any old family trip to DC, we were going to work. The folks at NACHRI and Children's of Minneapolis set up meetings with our congressional delegation, Senator Amy Klobuchar and Representative Erik Paulsen. We were off to lobby congress.

Telling the whole tale or our visit in one post would make for a long post... So Gretchen and I will work together to tell the tale in four installments, once for each day of the trip. Before we get into the details, I do feel that a quick update is in order.

Life has been delightfully normal in the Pipebaum home. Both Sam and Louise spent the year at the Highcroft campus of The Blake School. Louise was in the first grade with Zambi Franchot. Sam was in Pre-K with Dennis Gilsdorf. They both had a great year.

Louise is working on her math and reading skills and enjoys writing stories, singing, acting, recess and hanging around.

Best of all, she has been seizure free since the surgery two years ago!

Sam loved the building blocks, legos, and all the adventures in the Pre-K room. In particular, the inauguration and resulting discussion about the White House struck a spark.

Sam and several of his friends worked to create their own version of the White House using blocks.

In other news, we decided that the time had come to fix our leaky roof. Rather than just do the roof, we decided to take on a couple of additional projects. Shortly after our spring break trip, the contractors started work on the house. Over the last eight weeks they have given us a new rough, a new front entry, new siding, and a new kennel for Cupcake.

Just to keep things interesting, Gretchen decided to return to work and has taken a consulting position with the hospital foundation. She has been very busy helping the Abbott Foundation to continue to do their good work.

Finally, I have been busy with work. Fortunately, we have been able to keep busy even though things have slowed down a little bit.

Tomorrow we will begin our story about the trip.

2008-11-17T16:17:00.000-08:00

Sam and I created a little stop motion movie this weekend. Sam was in charge of choreography, story, motion, and modeling. Dad was in charge of technology.

Happy Holidays

2007-12-19T21:29:00.000-08:00

Each and every year we get all of our friends awesome family photos and we vow to do a better job next year coming up with a great shot for next year. Last year in May we had a pro come out to the house to get some pictures. She did a wonderful job and took a lot of great pictures. At the end of the session we decided to try for that great family shot one more time.

Now we know, the Pipebaums are the least photogenic family on the planet. I am not going to post all of the pictures here, but I did put them all in a web album.

Click here to flip through all thirty-nine of the photos and realize its true, the Pipebaums are the least photogenic family in the world.

So what have we been up to? Things are going really well. Since leaving the hospital, Louise has been seizure free for six months. Sometime over the last couple of weeks she seems to have crossed a threshold where her stamina seems to have really improved. We can now go a couple of days without a nap, and everyone stays on an even keel.

Sam is going to school three half days at Wayzata Community Church. He really enjoys it and has made a couple of great new friends. Gretchen and Sam have also been going to a music class once a week. Sam continues to be an avid outdoorsman. Today I found him sitting on the stairs in his 'deer blind'. Twenty minutes later he was at the top of the stairs, fishing. Before dinner he was outside working on his snow fort, it was about 15 degrees and dark. He did have a flashlight and all his winter gear. Here he is showing how to eat something bigger than your head.

The kid cracks me up.

Louise is a kindergardener at Blake. She has been taking violin lessons and has decided that she wants to be an astronaut when she grows up. Gretchen and I tried to use this new interest to help fuel an interest in science and math. Now Louise spends a lot of her play time doing 'science experiments', normally this consists of making a big mess. For Halloween she was a "pink astronaut princess flower girl".

Yeah, Louise cracks me up too.

Very serious about this Halloween mission

No year is complete without a trip to see the jolly old elf. We were all set to go to the Woodhill Christmas brunch, where Santa always makes a visit. The day before we got a nice little dump of snow. POWDER DAY ! We decided to blow off brunch and go get some turns in. Sam and Louise had a great time, but we wanted to keep it short. We realized that we just had enough time to go still see Santa, but there was no way to change out of our ski clothes. So here are Sam and Louise visiting Santa in their long underwear.

Santa loves camouflage long underwear.

For Gretchen and me one of the highlights of the last couple of months was an event put on by our local NHL hockey team, the Minnesota Wild. Each year the Wild do a "Wild About Children's" event where the players work with a local restaurant to raise money for Children's Hospital and Clinics. The players trade in their jerseys for aprons and work as the waiters and bartenders for all the attendees.

This year, the Wild decided to focus on raising money for the Epilepsy unit. Children's asked us if Louise would be interested in helping out with the program, we said that we would try. As part of this process and to help raise money for building the new Minneapolis and St. Paul Children's Hospitals, Louise was asked to help make a video about Children's mission. Gretchen and Louise went over to St. Paul expecting a quiet room with a camera and an interviewer. When they got there they found a room packed with about 40 people and all their gear. Gretchen said that it was really intimidating and was pretty worried about how Louise would respond.

Louise was a star...

I am going to try and get a copy of the video up here, but lets just say she was really comfortable in front of the camera. Oh, and Gretchen did really well too. It is really amazing to sit and listen to them tell you about her brain surgeries.

So the video was done Papa T sponsored a table at the event and we gathered a group to go over on a Monday in early December. Sam, Louise, Gretchen and I showed up a little bit early and there was the entire team. Every one of the wild team made it out for the event. Sam, Louise and I all got our jerseys signed by all of the players. Louise also got two very special signatures from her team, Dr. Dunn and Dr. Frost both signed her jersey too. (there signatures are easy to pick out, they are the really messy ones)

You hear stories about professional athletes, but every single one of the Wild players were unbelievably nice. To see Sam, perched on my shoulders high fiving Kurtis Foster, with a great big old shiner on Kurtis' eye, priceless.

Here we are with Aaron Voros the Wild's new tough guy scorer.

Two nights later we went to a game and Aaron was in his first fight five seconds after the first face off. Later on he got a goal. Two-thirds of a Gordie Howe hat trick.

Derek Boogaard is really nice guy, and he really is that big.

As part of the program, they showed Louise's video and then Dr. Frost got up to say a few words. Gretchen and I talked a little about our experience and then they got busy raising money. The event was a huge success, raising $180,000 which will all go to the Epilepsy unit. Hooray! A great start on the $7.8 million required to build the new pediatric epilepsy unit when St. Paul Children's is expanded and remodeled. They already run the largest inpatient peds epilepsy unit in the country, this will be a great improvement on the facilities.

Last night, the Wild invited us to a game in the Gaborik box where they presented a big check to Dr. Frost.

That many zeros and a Wild win? Smiles all around.

Both of Louise's doctors were at the event, as you can see they are both Wild fans.

Louise's Team After a Wild Victory

It took fifteen minutes lining up by height, and then Dr. Dunn closed her eyes.

Gretchen and I would like to thank Amy (from the Wild) and Julie (from Children's) for including us in this wonderful event that they put together. You did an awesome job. Next time you do this, sign us up!

As Louise continues to recover and get stronger, both Gretchen and I are so happy that we were able to find the Minnesota Epilepsy Group and work with these truly awesome doctors. When your child has epilepsy, you have to be careful to focus on today. When you start to look into the future, at all the things that might happen, it is too scary. We don't know what Louise's future is, the seizures could return or she may go on to become an astronaut - princess - flower girl. But with the Minnesota Epilepsy Groups help, Louise's future looks much more promising, we can dream again.

Last week, we had a big weekend. Skiing, sledding, skating, decorating the tree, birthday parties, and church school. Non-stop action all weekend. No major blow ups, happy kids all around. A year ago, a day like this was not possible. If we didn't stay on routine, and keep things mellow, Louise had seizures.

Thanks to the surgery, Louise is getting the opportunity to be a kid again. It really is wonderful. On Sunday, I was thinking about what would have happened if we had not found the Minnesota Epilepsy Group. The odds are very high that we would:
- have continued to work with our previous neurology group
- Louise would have continued to have frequent sub-clinical seizures
- the visible break-through seizures would have continued (break through the anti-epilepsy meds)
- Louise would have continued to damage brain tissue with each seizure

It isn't a happy picture. Two thirds of all children with epilepsy that do not achieve seizure control by the time they are adolescent never lead a 'normal' life. Depression, substance abuse, inability to hold a job, drive a car, maintain relationships, the odds would have been against Louise.

On the other hand, for children with epilepsy that do achieve seizure control the odds are exactly reversed. Two thirds of them will go on to lead normal lives. Effective epilepsy treatment is absolutely critical, and the earlier it can be controlled the better.

The simple truth is that epilepsy is a wildly complicated disease that is much more common than you could possibly imagine. 1 in 200 children have epilepsy. There are 125,000 new epilepsy cases in children every year. Epilepsy affects more people than cystic fibrosis, multiple sclerosis, muscular dystrophy and tuberculosis combined. The amazing thing is that more than 75% of the cases, they can not find a cause.

Dedicated epilepsy centers with video EEG like the Minnesota Epilepsy Group are the most effective way to diagnose and treat epilepsy. Unfortunately, many (most) children don't get the chance that Louise has been given. There aren't enough facilities. Non-specialists don't feel the need to refer their patients to the specialists. Parents can't afford to get the care their children need. Finally, in far too many cases even the experts have not figured out the answer, yet.

When people ask us how we got through this all we can do is smile and say we consider ourselves to be very lucky. We have been blessed with great doctors. A great support network (thank you all, you are wonderful). And blessed to live in a time where the doctors have so many options available.

Gretchen and I will be working to help St. Paul Children's Hospital and the Minnesota Epilepsy Group continue to expand the level of care that they can provide. We will also be working to help expand the awareness of the disease, support those seeking a cure, and to spread the word about the good epilepsy centers that ARE available. If you know anyone that is struggling with epilepsy that is looking for help, please feel free to have them get in contact. We would be honored to do what we can to help. If you are interested in helping out, let us know.

Well that was a bit heavy. I better end on a lighter note, how about one more picture. You see, even though we are the least photogenic family in the world, we keep trying. After a day of skiing, tree decorating, and birthday parties, but full of the holiday cheer that only comes once a year (and the dread of picking out the family photo) we gave it another shot.

What do you know? Even a blind pig finds an acorn once in a while.

Happy Holidays

Gretchen's Update

2007-09-12T20:05:00.000-07:00

This is a message from Gretchen that I am posting on her behalf. Did I hear something about teaching a person to fish? Nah - I really like fishing and I am not so found of teaching.

Children's Integrative Medicine is hosting an educational event featuring Louise's story on Thurs Oct 11 at the Marsh. We'll have some tickets to share with friends, let us know if you are interested we would love to have you there.

I'm holding my breath as I think this... but things are really great. Louise seems to be seizure free right now and thriving in kindergarten. Sam just turned 4 and is opinionated and loving as ever. We just celebrated our 14th year of wedded bliss (is that a groan I hear from the crowd, okay Scott says "13 1/2 great years" not bad for a couple of hot-heads, many seizures and a couple brain surgeries). Sure, we have the same mundane garbage as any family (and I can have a horrible potty mouth), but the thing is that we often can get through it and back to seeing what a crazy, amazing trip this all is.

Sadly, we have watched many of our 7940 (ed. 7940 is the name of the Epilepsy unit) friends and extended family fall further into the seizure monster's grasp. We pray for our friends and their little ones. Thank you for supporting us and constantly reminding us of the fragility and unpredictability of life. You've helped us focus on the good stuff when there's alot of bad stuff we could see. The prayers and support from these amazing kids and their families is unbelievable. Wow, these families are good "pray-ers". Please keep them in your thoughts and prayers, they have sure helped us and they can use all the prayers we can muster.

Many thanks to Zoey (caringbridge.com/visit/zoeybemis)
Ryan E (caringbridge.org/visit/ryanerickson)
Ryan M (caringbridge.org/ne/ryanm)
Katelyn (www.caringbridge.com/visit/katelynw)
Super C (caringbridge.org/visit/carolineruby),
Reese (caringbridge.org/visit/reesejohnson),
Kylie (caringbridge.org/mn/kylie/)
Mary (caringbridge.org/mn/maryhable)
And of course Jess (caringbridge.org/nd/jessmarie) and McKenna and Drew (caringbridge.org/mn/drewolson/)

We will always be involved with epilepsy, with Louise and with our friends and supporting organizations that help improve treatments and find cures (efmn.org, cureepilepsy.org). We will be involved with efforts to improve local care for epilepsy as a new Pediatric Epilepsy unit is built at St. Paul Children's as part of the big Children's improvements

Madeline Island

2007-08-08T19:59:00.000-07:00

We all took a week off and went to Madeline Island this week. Aunt Ginny and Uncle Henry have a cabin up here on the shore, and they were kind enough to let us use it for the week. Since Louise has been doing well*, we decided that a vacation was just the ticket.

I have loaded a bunch of pictures up to my picassa site. Rather than port them all over to the blog, which is a bit of a pain, I am just going to link to the picassa web album. Okay, I have to put one picture in of Louise. This is Louise in her Rasta phase.

If you click on the picture it will take you to the web album.

Thanks a lot to Ginny and Henry for letting us use your cabin, it is perfect. Also thanks to Debra Frasier for taking the family photo on pirates island.

*How well? seizure free since 7/3/2007. Today she and her brother were tubing in Lake Superior, without any parents on board at about 20 mph. They were on the tube for almost 2 miles and just had a blast. There is one picture in the photo album, but that was just during the warm up phase. Once we really got cooking, Gretchen was not in much of a mood to take pictures. I guess we will have to try again tomorrow.

We couldn't be happier with the way things are going right now.

scott

Things are Good

2007-07-10T12:26:00.000-07:00

Last time I wrote, we were still having some seizures and were in a bit of an unknown state. Since then we have introduced a new medication and worked with the child psychologist, between the two we have basically been seizure free since Thursday last week. So things are looking very good.

On Wednesday last week, the family went up to the club for food and fireworks and everyone had a great time. It was a late night, but for a once year event, it was worth it. Since then we have had a number of visitors and a couple of trips up to the pool. In addition, we have been swimming almost every day. Sam is a fish and Louise is a mermaid. They are doing really well in the pool.

Today, we went to see both Dr. Dunn and Dr. Frost. Both of the doctors were very pleased with Louise's recovery and seem happy with where we are at in terms of control of the seizures. Dr. Frost is happy with the current meds. It looks like we will continue on the current course as long as we don't have any seizures. If all goes well, we may try removing one of the meds this fall after school starts.

After todays visit to the doctors, I think we can safely say that things are the best they have been since before the surgery.

Scott

Update

2007-07-03T10:34:00.000-07:00

Sorry for the lack of updates. We have not had a lot to report, or better said too many unknowns to report with any accuracy.

The good news:
- Louise has her staples out
- She seems to be doing really well most of the time
- We have not had any major seizures involving loss of conscious (Complex Partial)
- She is working on reading, coloring, and is in general back to normal
- She seems to be getting her stamina back and is able to tolerate more and more activity
- The majority of the pain issues seem to be behind us

But (there is always the but) things are still not where we would like to be. Louise continues to have what appear to be simple partial seizures. These are small seizures where she can talk through the seizure, and there is no tremor. She reports these seizures as being a tickly feeling. According to Louise, the tickly feeling is different from her pre-op tickly feeling. It is not as intense or long. Unfortunately, it seems to be more common now then pre-surgery.

We have introduced a new (third) medicine which seems to be controlling the seizures for now. The doctors indicate that this is not a long term solution and that this medicine will lose its effectiveness over time. It has been a pretty good indication that the tickly feelings are actually seizures, since it seems to be effective in controlling the condition.

So there are a lot of questions:

Is this part of the healing process?
Are these really seizures (we think so)?
Does this mean she will have more surgery?
Can we control it with medicine?
What is the long term prognosis?
Did they miss something?
Are these seizures originating from a different focus?
Was this whole process a big mistake?
Will we ever have this behind us?

The answer to all of these questions is, we just don't know. We will be visiting with Dr. Dunn and Dr. Frost next week on Tuesday to discuss the current status and to evaluate what our next steps will be.

Fathers Day Weekend

2007-06-18T08:22:00.000-07:00

More news from the no news is good news column. Had a really good weekend. So far we have not had any seizures, but we realize that it is still way too early to tell. Louise is now off of all of her new medications except for an occasional Tylenol, which we have cut back significantly too.

Louise will continue to take the Keppra and Depakote which are anti-seizure medications for a long time, possibly forever. There is a bit of discussion about getting off the anti-seizure meds, but our docs thing that the benefits of enhanced seizure control far out weigh the risks/problems associated with the meds. At best, we may move to a single medication in a year or two if all goes well.

It will be interesting to see what happens to Louise's appetite now that we have stopped the steroid (Decadron) that she was on. The nurses and literature said that it increases appetite. We had no idea how much. Louise put on almost 5 pounds in ten days since the surgery. She went from 38 to 43 pounds. You should see her cheeks (also a side effect of the Decadron).

Over the weekend, Louise started having a couple of short field trips out from the house. We are still taking it very easy, but it is clear that she is getting her strength back. Yesterday, she did not want to take a nap. I laid down with her, which has been effective over the last couple of weeks, but this time it didn't work. Well not for her, Dad got a nice one hour nap.

In the evening we had some family over and Louise was very animated and seemed to hold up really well, at least until it was time for everyone to leave. Louise seems to be a bit more shy when people come to visit, it takes 5-10 minutes for her to warm up. Once she gets going, it seems like her verbal and reasoning skills are actually better than before the surgery.

She is remembering things and discussing them with a detail that we did not see before the surgery. In addition, prior to the surgery she was interested in reading and math but would quickly tire of any practice. Now, she seems to be engaging at a deeper level and things seem to stick more. It might just be her age, or it could be that she is not having the small seizures that we suspected pre-operation.

Gretchen and I are trying not to analyze things too much and just enjoy the good times with Louise (quit snickering, I said we were trying not necessarily succeeding).

I want to thank everyone that has contributed meals over the last week. It has been really nice to be able to not have to worry about whats for dinner.

Tomorrow we remove the staples. Louise and I are going to make one more trip to St. Paul to have the staples removed at the surgeons office. We thought about having the local doc do it, but figured it was a good chance for them to get a look and make sure that everything looks ok for swimming.

I will try and update things here after we get the staples out.

sr

Friday - Slow Improvement

2007-06-15T14:10:00.000-07:00

Louise continues to improve slowly. Last night when I got home, I caught the end of a two hour up time when she was really doing well. Unfortunately, she still tires very easily. So far everything looks great. We just need to have lots of patience.

The plan is for Louise to have the staples out next week on Wednesday. Our hope is that Louise is doing much better by that time. Hopefully it will solve the itchy head problems.

Thanks a lot to everyone that has been providing meals. It has really helped us to get our feet back on the ground.

Wednesday - Sorry To Leave You Hanging

2007-06-13T07:11:00.001-07:00

Sorry for not keeping things up here and leaving you hanging, but things have been a little hectic around the house. Louise is doing well as she continues to recover. It is a slow process, sometimes she seems just fine but she tires very quickly. In addition, pain management is still tricky.

Louise continues to eat us out of house and home. Basically, we she gets what would normally be considered a large meal, every two hours, all day long. The biggest issue is that she has moments when she seems to be doing really well, and it is easy to overdue it. The nurses have warned us to take it really easy for the next two weeks.

Sam came home on Sunday and his energy level is, really high. The excitement of spending ten days at Camp Cook, combined with seeing Mom and Dad (mostly Mom) has made him a bit of a handful. Thanks to Pop, Gram, and Sandy who have helped to keep him busy. He got a new play-mobile helicopter when he got home, and he really loves it.

A very special thanks goes to our neighbor Ben. Ben was there early on Monday and has been a great friend to both Sam and Louise. Unfortunately, Ben is headed out on vacation for the next month starting today. Have fun on your trip Ben, we look forward to seeing you back in July.

I am trying to get back to work, and am slowly but surely working through the mound of things that piled up on my desk while I was out.

I will try and update more tonight, but the mound is calling.

Scott

Sunday - We Are Home

2007-06-10T11:35:00.000-07:00

Well the doctors told us that once you turn the corner things go really quick. We had no idea that it could be this quick. Once the pressure bandage was removed on Friday evening, we turned the corner and we were discharged at 10:30 today.

Why so quick? What happened to a month?

Well the biggest change is that because Louise had seizures immediately following the grid placement surgery, Dr. Dunn was able to move up the resection surgery by 8 days. Some kids have the grid for 2-6 weeks. Also, on the recovery side, we expected 5 - 7 days. Louise, star patient that she is was ready to go after 3 and half days.

We have Moo bringing us dinner tonight and we hope to pry Sam away from camp Terrie this evening. The Pipebaum's could be back to abnormal by the end of the day. Now the longer road to full recovery begins. I will continue to provide updates, but I am going to guess they will lack some of the drama of the last ten days.

Okay, is that just wierd. My daughter had two brain surgeries in ten days, and she is now home resting on the couch? For all the complaining about a failed health care system (a lot of it by me), when they get it right it is truly amazing.

Thank you everyone for the help getting through a really tough situation. Your support means the world to us. A special thanks to Terrie and Randy for caring for Sam, all the grandparents for many hours holding our hands and to the amazing staff of 7940 who doled out hugs and good wishes along with their many nursing responsibilities. Many thanks to Lucy for organizing meals while we get things together, and to all the people that have volunteered to drop something off.

Finally, I would like to thank the Lord for helping Gretchen, Louise, and me to get through this ordeal.

scott

Saturday - Wrapup

2007-06-09T19:00:00.000-07:00

Today was a really good day. Louise woke up right as I finished up the previous post. I went back in there and we both slept for another hour. One of the joys of the video system is that when I came out of the room, all of the nurses asked how my nap was. They are so caring.

We got dressed in the blue Hawaiian dress that grampa Cliff got her, a real favorite, and went for a short walk. We then went out to the center circle and played with the polly pockets toy (thanks aunt molly) and did a little coloring.

After that, mom showed up with, you guessed it Punch Pizza!!! Chocolate milk, yogurt drink and some blueberries rounded out a fine meal. The highlight of the day was going downstairs to have a tub. Turns out tubs are a required part of the stay, can't go home dirty. You could just see the tension disappear once she got into the nice hot tub.

When I left she was angling over how many Curious George episodes she was going to watch. My guess is she will make it through one and she will be asleep.

I talked to the nurses on the way out. Now they do not make the decisions, that will be up to Dr. Frost, but they felt that it she could get discharged tomorrow. She is doing that well. Even if we have to stay through Monday, it is so much easier to be there when she feels good and is not all hooked up to tubes, electrodes and things that go beep.

sr

Saturday - Looking Good

2007-06-09T12:03:00.000-07:00

We have had a really good day today. Dad slept in and showed up to find a smiling, cheerful girl who had been dis-connected from her IV pole. After a big breakfast (two pancakes) we sent mom on her way and then opened presents from Grammy and Butch. Thanks Mom, Louise particularly liked the little car and the jumping toys.

Ms. Loftus showed up after our play session and helped Louise to build a beautiful foam house. Louise then had her IV removed while she and Patti watched Strawberry shortcake. I was banished from the room, and then I needed to step and fetch some eggs for lunch.

At lunch Louise continued to astound me with her appetite. Two egg sandwiches on raisin toast, half an avocado of guacamole with chips, chocolate milk, raisins, blueberries... Girls got to eat.

Louise is now down for a nap. It looks like our biggest issue now is that the tub is out of commission until Monday. Which means Louise will probably have a tub at home. Kind of a shame because they have the best tub in the world here. It is really large, and they have a nice warm chair to sit in afterwards.

Yes, I was being clever. It looks like Louise will be home on Monday. She really is doing well and everything looks great.

Friday - Wrapup

2007-06-08T19:22:00.000-07:00

I can hardly believe that it is only Friday. It has been a long couple of days. I wanted to try and catch everyone up on the events from the last 24 hours. First a huge thanks to Pop and Gram (Tad and Louise) for being there all day, willing to do anything we asked and saying the right things when they were needed.

Louise seems to be doing much better. We may have figured out what was causing much of the pain that she has been facing for the last couple of days. We were talking with Dr. Ritter and Dr. Dunn at about 6 tonight (long hours for the docs). Gretchen and I were talking about the pain, and we mentioned how Louise was pulling at her pressure bandage.

Dr. Dunn said, "pressure bandage, you mean dressing". We say no, she still has her pressure bandage. She raises her finger, immediately gets up, walks over to Louise and immediately cuts off her pressure bandage. Louise showed immediate relieve. Think about wearing the tightest hat you have ever worn for 47 hours straight, think you might have a bit of a headache?

Someone mentioned that they miss the food reports. This morning Louise managed to put away two large pancakes, and a whole yogurt. For lunch she had chips and guacamole. Tonight after the bandage was removed, Louise ate two pieces of toast, most of a punch pizza, a half pint of blueberries, some chips, and a few cheerios. Guess she was hungry.

She got to sleep at about 7:30 and I hope that given the improved pain control she will have a really good nights sleep. Gretchen is going to spend the night in the room and I am going to get a good nights sleep at home. Gretchen and I are doing pretty well and seem to have found a decent rhythm on the unit.

Based on how Louise recovered last week, I expect that tomorrow will be a much better day. A couple of friends are coming to visit and we hope she can get a soak in the tub. The doctors still feel we may be home early next week.

In terms of last night's seizure, the doctors tell us post operative seizures can occur for up to one month. So as hard as it is, we just have to wait and see. All of the docs met and discussed things, they don't like the seizure but they are not overly concerned.

Finally an apology about the lack of pictures. Louise has just not wanted to have a camera around, and I haven't really had it in me. I will get some pictures out tomorrow.

Thanks for all your comments, prayers and thoughts.

Louise - She's Back

2007-06-08T07:25:00.001-07:00

3:00 Update:A quick update from another author. Pop here. No new word from the medical team. Louise has had some sleep, taken a short walk, chattered away with me and Gram. A few crabby moments but mostly just continuing to be a rock star patient. Grandpa Clif arrived a few minutes ago and Louise is busy entertaining him and has ordered Dad and me to find something else to do. I continue to be very impressed with the patience, compassion, and expertise of the staff here on the unit at Children's. Gretch and Scott have been incredible parents in the midst of a very stressful environment. Gram is a calming influence for all of us.

Pop

10:03 Update: Louise has kicked mom and I out of the room so that she can hang out with Pop and Gram. I have started passing notes to pop with requests, since I am not allowed in there. I am taking this as a good sign.

Well if you read the previous post, than you are going to get a feel for the roller coaster that we have been on for the last 24 hours. We met with Louise's surgeon early this morning. Over a large cup of coffee (funny how things seem better after a big cup of coffee), she reviewed the MRI and discussed the possibilities.

Once again, Dr. Dunn has really impressed and reassured us with her passion for what she does and her concern for Louise's health. She left to speak with her colleagues and to discuss possible direction.

Gretchen and I went back to the room to find a smiling, talkative little girl that we know named Louise. She has had a large breakfast (two pancakes - with syrup and a whole yogurt cup). She is now watching Curious George with pop. I am trying not to laugh as the two of them provide commentary on the movie. Clearly someone is feeling MUCH better.

We do not know what the doctors are going to say, but my guess is that given how she is feeling we are in a wait and see mode.

sr

Friday - Rough Night

2007-06-08T04:47:00.001-07:00

We had a really rough night. Louise continued to have a lot of pain throughout the day yesterday. According to the docs, kids typically have less pain for the second surgery since we have removed the grid, which places some pressure on the brain.

Louise's surgeon had a look at her MRI and said that it looked good late in the day. I went home to get some sleep. Louise continued to want hide her face since she was reactive to light. Gretchen pulled back her cover to get a look and realized that she was having a seizure.

The seizure lasted between 15 and 20 minutes and was very difficult to control with additional meds. It is possible that it was actually a cluster of smaller seizures, we don't really know since she does not have EEG on (you can't have EEGs and the pressure bandage).

I have just gotten back on the unit after spending the night next door to the hospital. Apparently she has done well through the night, with more aggressive pain control. The nurse reports that she has been talking (a little) and responsive to both Gretchen and the nurse.

We are all really discouraged right now, but it may not be as bad as it seems. Apparently post-op seizures are relatively common. In addition, there are no studies that correlate seizures in the first week post-op with continued seizures throughout life.

We will continue to try and control pain throughout the day, and see what happens. The plan is for Louise to have the pressure bandage to be removed, which may ease some of her pain. At this point there is not much anyone can do except wait and pray.

I will try to update things as we move forward, but the updates may be relatively rare.

Thursday - ReSection Recovery

2007-06-07T04:29:00.000-07:00

2:00 Mom got a good sleep and lunch and is now taking a short break. Louise is getting ready to go down for her MRI. We have been trying to stay in front of the pain, but she is pretty sore today. The nurses have been really great, and it looks like things are heading in the right direction.

I will be taking Louise down for her MRI and then heading home for a little sleep. Gretchen is going to stay in the room with Louise tonight. It does not look like today or tomorrow are going to be good for visitors. Maybe tomorrow afternoon if we are lucky. She should be feeling much better by Saturday.

8:30 What a difference an hour and a half can make. Down to one IV line, all that other stuff gone. We are now back in the epilepsy unit and it feels like home. Louise and Pig are wrapped up in her favorite brown blanket and we have Curious George on the DVD. Louise is drifting in and out of sleep but she seems to be doing much better.

In the spirit of five year old jokes: What do you call a person that is running to the potty?
Russian.

What do you call a person who is leaving the potty?
Finnish

What do you call a person while they are in the potty?
European

My apologies to the visitors in NL and the UK.

7:00 Sitting in the PICU with Louise this morning. Gretchen stayed most of the night, and I showed up at 4. Unfortunately, Louise got a bit behind on the pain medication so it was a bit of a long night. It is amazing how a little time in one of the other units of the hospital reminds you of how good things are up on the epilepsy unit.

Since I got here, they have taken care of the pain, and now are slowly but surely removing the tubes, wires, clips, and crap left over from the surgery. She should be back to the epilepsy unit within the next couple of hours.

Today should be a restful day, with the only scheduled event a quick trip for a follow up MRI.

Wednesday - Surgery 2

2007-06-06T09:40:00.000-07:00

9:45 Louise is sleeping in the PICU with Gretchen now. She looked good. I am heading back there after a short sleep so I need to be brief. One really great piece of news. All of the doctors warned us that it might be a couple of days until she could speak. Just a temporary thing due to the stress of surgery and re-section. Louise has been speaking quite clearly letting us know when she was cold, needed water, or wanted the lights turned off. So that looks really great.

7:25 Dr. Dunn just came in and Louise is in recovery. Dr. Dunn was clearly pleased with how things went. Once again she was able to do her work with almost no blood loss (approximately 25 cc). It is really comforting having someone that is so passionate and caring working on our daughter.

I will try and blog again later tonight with a wrap up, but please don't be concerned if I don't get to it until sometime tomorrow. (I'll call later tonight mom). Gretchen and I are now going to be committed to making sure that Louise is as happy and comfortable as she can be.

7:16 Why so long to close? Doctor Ritter warned us that the close might take a while. Apparently Dr. Dunn trained in cosmetic surgery too, and takes great pride in making sure that the incision is closed in a way that will leave a minimal scar. Still on the no news is good news waiting cycle.

6:46 We just heard from Sam. His time at Camp Terrie continues to go really well. He has been digging big holes, he caught five fish, he had a sleep-over with his buddy Ryan. It was really cute, when I got on the phone the first thing he asked is if he could talk to Dee Dee (his name for Louise). Gretchen and I are so lucky to have Terrie and Randy as good friends of the family.

6:15 Sometimes you hear stories of how the internet is a bad place. I just want to say that this truly is proof of what a wonderful world we live in. Thanks to all of you who have posting and emailing your support it really helps.

5:55 Dr. Ritter doing his Dread Pirate Robert impersonation. I guess long hours and stressed out parents have taken their toll on the good doctor.

Dr. Ritter just came out of the OR. They have started closing Louise and she is doing well. The surgery went exactly as expected with no complications. Louise should be in recovery within an hour and in the PICU (pediatric intensive care unit), within a couple of hours.

The smiles say it all.

5:45 For those of you that could not see the pictures of the grid doll that I posted on Friday, I just updated those links. I am beginning to think that my Great Idea to get rich selling this room may be a bit of a bust. Turns out you have a lot of time, but you are completely and totally unable to do anything of use. Time dilation turns you into an idiot. Another great idea down the drain.

5:20 Four hours and counting. We are in the no news is good news mode. Gram is awake, Tad is fusing his butt into the comfy chair, Gretchen is doing yoga, Cindy is elevating her legs, and I am bouncing off the walls. I can't wait to market the time dilation associated with this place.

4:36 Big Louise is back with us and she would like to point out that she does not spend all of her time at the hospital 'reading'. She has been Louise's main supplier of Cotton Candy ice cream from the Grand Ole Creamery. She has also helped to keep Gretchen and I sane.

4:04 Well at least one of our team knows how to pass the time. Anyone know any good jokes? We are soliciting clean jokes in the comments section. If it is not clean, email it to tad.

3:07 The nurse just let us know that they have started the surgery. Everything looks great with no sign of infection or other issues. If any of you are interested, I have posted some pictures of the dressing change to my picassa account. I am not going to put the pictures here since they may be a bit more graphic than what you want to see. Go here if you are curious.

2:25 Yes, we are in the same #$%@&*(& waiting room, the one where time stands still. I have checked with the rest of the team, and the chairs really are as uncomfortable as I thought.

2:00 Louise's anesthesiologist just came out and let us know she is under and everything is going well. They are probably still prepping, surgery will start in about 30 minutes.

1:30 Louise went in to the OR at 1:30.

Just to keep everyone up to date on the schedule. Louise is scheduled to start at 1:00. That means the actual surgery will start around 1:45 - 2:00. We expect Louise to be in surgery between 3 and 6 hours, but will not be surprised if it goes longer.

Louise is resting in bed with her friend Ben watching Curious George now.I will up date the blog throughout the surgery.

Louise is resting in bed with her friend Ben watching Curious George now.I will up date the blog throughout the surgery.

Tuesday - Unhooked !!

2007-06-05T14:10:00.001-07:00

We are all set for our surgery at 1:00 tomorrow. Our friend Bill from Spokane, is passing through on business, so he dropped by to visit. Louise spent the day opening gifts and playing games. We got to play an exciting new game named fairy snaps, be careful if you play Louise she is a shark.

We also did a lot of quality walking around the circle. It is more fun if you can march instead of just walking. Do any of you know any good marching songs?

Lissa, Charlie, Eva and Owen created a beautiful Lovable Louise cape and sent it in. As you can see there is big L on the satiny outside.

The inside is soft and fuzzy and has two pockets to store special things. One of the pockets was filled with some really beautiful pictures of Louise and here family that Chrissy took last weekend.

Louise finished up her third grid stimulation pass today. All three of the grid passes showed Louise's language in the same location. Even better, the language center is a long way from where they plan on doing the re-section. After the last grid pass, the doctor said we have enough information, unhook her.

They took off all the monitoring equipment which gives her a bit more ability to walk around. It is also nice to not have to worry about dropping the bag of wires and causing problems.

I wanted to say congratulations to Louise's teacher. She received the Juliet Nelson award today.

The Juliet Nelson Award, created in 1986, is awarded annually to a Blake faculty member who, during the course of the academic year, has taken the time to give of him or herself in a special way - as mentor, confidant, tutor, or friend to a student. The award is created to affirm the kind of selfless one-on-one support,
instruction, good humor and friendship which characterizes community at its very best and turns an academic environment into a happy place for creative learning and personal growth.

Gretchen attended the fifth grade graduation celebration. Many of Patti's kids from six years ago will move on to the Hopkins campus next year. She reports that it was a very popular announcement with the kids and their parents.

Dr. Ritter took an hour to walk us through the results of all the tests and the proposed procedure late last night. He said that Louise is a very straight forward example of mesial temporal sclerosis (MTS) and he has very high hopes for the surgical outcome.

Dr. Dunn will remove about an inch an half from the front of Louise's left temporal lobe as well as the hippocampus and amygdala. They feel that all of the tissue is diseased and not working. In addition, it appears to be the source for her seizures.

I just want to say how great it feels to have doctors of this caliber working on our daughter. Drs. Dunn, Ritter, and Frost are some of the very best in their field. Their passion and dedication is truly inspiring. Not only that, they are really nice people, laughing and joking with Louise and her parents has made this a much easier process to get through.

Their team, other doctors, eeg technicians and especially the nursing staff have made what is a really difficult experience far easier to tolerate.

Scott

Monday - Grid Simulation

2007-06-04T12:54:00.000-07:00

Louise had her first grid simulation this morning. The doctor and an EEG technician hook her leads up to a bright red machine with a whole bunch of plugs. Each plug maps to the electrodes in the grid.
As you can see in the next picture, the doctor plugs a red and black electrode into two of the holes in the grid stim unit.

The doctor then asks Louise to count to ten or say the alphabet. While she is doing that, he sends a small amount of current across the two electrodes.

Most of the time, nothing happens, but when they find the right location, Louise will notice. She will have a tickle or she will stop speaking.

In some cases she said that she felt a tickle in her
tongue. She said it felt like a piece of paper in the shape of a heart.

For some of the sensitive spots, it would impact her motor control of the tongue. Really a little wild.

When they were on the speech center, she would start counting 1 - 2 - 3, and the doctor would flip the switch. She would hesitate, the doctor would turn off the switch and she would continue.

Through it all Louise was a true champion making a game out of what could be a really scary experience.

So whats next? In about 15 minutes the doctor will come back and we will do another pass that is a bit more focused on the speech and understanding.

One other piece of news that I can share is that they have moved Louise's surgery date up. We are now scheduled for 1:00 on Wednesday. This is really great news, since the original plan was to wait until Thursday next week. So this should cut almost eight days of Louise's stay.

There are no issues, the doctors have just seen what they need to see in a lot less time than they initially expected. Hopefully, this time next week we will be home and Louise will be on the road to recovery.

Nothing is ever certain, but things are looking very promising.

Evening Update: Louise made it through her second grid stimulation study this afternoon. Things were a bit more intense on the second round as they try to zero in on the functional centers. Louise did really well and the studies seemed to match the first study results.

We will probably do one more study tomorrow. In the second study they move horizontally across the grid. In the third study they will move vertically. Typically a different doctor will be used for test, so that we make sure that we have the appropriate results.

After the tests, we had another visitor from school. Louise's guidance counselor dropped by and brought all kinds of goodies from school. We got a video from Friday's class, with a classic strawberry shortcake story. Then we got to see her classmates make strawberry shortcake. As a special bonus they all said hi.

Thanks so much to the teachers, parents and classmates from the pre-k class. Louise has a video that she wanted to share with everyone, but dad hasn't quite figured out how to post videos. What is that you tube thing anyways?

Sunday - She is Back

2007-06-03T11:41:00.000-07:00

I came in today and Louise was in the middle of a huge coloring project with Mom and Pop. Mom left for yoga and a little laundry and Pop and I were able to finish up the drawing. Guess who that is in the lower left corner. I'll give you a hint the roundish one has a colorful collar.

On Thursday, I wondered if she would ever get back to normal. Today Louise may not be all the way back but she is pretty close.

Drawing, counting, stories, and singing are all back in the bag of trips. More important she seems to have her spirit back.

Rumor has it that she ate french toast, pancakes and oatmeal for breakfast so it sounds like her appetite is back too. Did you know that you can have chocolate milk for lunch in the hospital?

After coloring time we had another walk around the circle. This time we made it through nine laps instead of our standard six. After the walk we had a little snuggle time and then some lunch.
We had a great lunch and now Louise is having another nap. The good news is that she really did not want to go down for nap, so things really are getting back to normal.

We have a special friend from school (teacher Christy) coming to visit this afternoon. We also have new coloring books and pens from the friends at the Abbot Foundation (thanks).

Thanks also for all the balloons from our ECFE friends. I forgot to mention it but one of the first things that Louise had to say when she came out from the narcotics fog is, "where did all those balloons come from?"

Tomorrow we start with the mapping exercises.

Saturday - Sleep and Swelling

2007-06-03T11:26:00.001-07:00

Sorry I didn't quit a post up. Louise was a bit more responsive, and by the time I got home, I was just not in the mood. So on Saturday Louise discontinued the narcotics and went to just Tylenol. So she is starting to feel better. Her scar is healing nicely. She was a bit itchy in the morning so they gave her some benadryl which knocked her out from 8 until about lunch.

After lunch we watched a movie and then had another nap. Louise's friend Katelyn dropped by but as you can see both of the Louises were taking a nap.

Fortunately, Louise woke up just before Katelyn had to leave. Katelyn got to go on a walk with Louise around the circle.

After the walk we broke out the Hi Ho Cherri O game which Louise really loves. Final score:
Louise 2, big Louise 1, Gretchen 1, Dad 0. Yes thats right I got skunked. I am so mad.

Louise had a really good dinner time with both Pop and Moo coming along. She now has to take all of her meds by mouth, which she did like a trooper.

Louise seemed to be in really good spirits at dinner time, but still got tired fairly quickly. After dinner we watched a little Curious George. About half way through the movie, something clicked and Louise got a really good case of the giggles. We had a really good laugh through out the movie.

We gave her a little benadryl right before bed time and that was it. Lights out. According to the nurses she slept through the night.

Friday - Things are Looking Good

2007-06-01T16:55:00.002-07:00

I had a little time on my hands, it's Wednesday and I am in the land that time forgot (surgery waiting room). Big Louise was kind enough to point out that these pictures did not work. So here are the grid doll pictures updated.

Louise had a really good afternoon. We had visits from Gram and Pop and watched a couple of really good movies. It seems like we are getting good pain control using Tylenol. Louise's appetite returned too, and she ate quite a bit. It was a little confusing, since Louise was looking for breakfast and we kept saying it was dinner time.

After a little dinner, we came to the next big event for the day. After changing into her pajamas, and putting on her new sparkly shoes, it was time for a walk.

The first few steps were a little slow, but she got her wheels under her by the second lap and she did really well.

Our nurse felt that we had turned the corner and that things will only get better.

I have spent a bunch of time talking about the grid, and mapping. It is a little hard to visualize just what I am talking about so I thought I would give a bit more information.

This is the grid doll. The grid doll has really crazy hair, which is really easy to get rid of. You can see the leads from the grid coming right through the scalp.

During the surgery they opened up her skin with all of the hair still attached. They only shave a 1/4 inch strip where the incision is made.

Next the skull is opened and the bones removed. The bones are stored in a sterile solution to be replaced when closing up.

Finally they open the dura, the protective sheath that protects the brain. The grid which you can see in the picture is placed directly on the brain.

Each of the contacts measures any electrical activity. If a seizure happens the doctors can see exactly where it starts and how it spreads.

What is not shown in the picture is the strips which extend under the temporal lobe. A strip is a single line of 10 electrodes. I think Louise has several strips.

Once everything is stable, they will start mapping her brain function. They will send some current from one electrode to another and see if affects her. The critical function we are looking for is speech.

They will start the search away from the seizure focus. Hopefully they will find speech without going near the seizure focus. They stay away from the focus is that they do not want to induce a seizure with the mapping.

Tomorrow we have a couple of visitors scheduled and whole bunch of time walking, and playing games.

I'll keep you posted.

Thanks for all your emails, comments and prayers.

Louise, Gretchen and Scott

Observation - Day 1

2007-06-01T11:07:00.000-07:00

Louise is sleeping soundly now, so I had a minute to do an update. Louise's surgeon Dr. Dunn dropped by this morning to see how things were going. Louise was a little bit sleepy at the time, but we got a quick picture.

Louise continues to recover and is getting a lot of sleep. The CT scan was done this morning as scheduled, so we got that out of the way. The next major milestone is the first dressing change which should be soon.

In fact it is done now. Well that was a bit scary. It only took about five minutes but it is a fairly intense five minutes. The scars looked good, the seeping/bleeding had stopped and all of the EEG leads were in good shape

Louise has woken up and we are watching over the hedge. She seems to be feeling a lot better and we have moved over to Tylenol instead of narcotics. Later this afternoon we will start the walks, have a little Punch pizza and, as Louise puts it "make it like the last time we were here and had fun".

We have had one really good piece of news, in that bizarre hospital good news sort of way. Louise had a number of seizures through the night and morning. Why is this good news? First, it has confirmed that the origin of Louise's seizures are exactly where they are supposed to be. Second, in the past we have had to wait 5-7 days for any seizure activity. It appears that the surgery stirred things up to the point where we will not have to wait for activity.

Dr. Frost said that this is fairly common, and was pleased with the way things went.

Thanks for all the prayers, email, and comments. Your support means a lot to Louise, Gretchen and I.

Grid Placement Surgery

2007-05-31T09:09:00.000-07:00

I just update to add pictures and a bit more description at the end.

11:00 We got up early this morning and had a nice breakfast of jello and gatorade. Louise went into the OR at 10:20 this morning. They are still doing the surgical prep, but we expect the surgery to start shortly.

12:00 The surgery started at 11:40. The nurse reported that every thing is going well.

1:00 I have a great idea for a business. Capture the speed that time moves in this room, and sell it to people who just don't have enough time. We have plenty here. Louise's epileptologist just came out and let us know that they have placed the grid and have started testing of the leads. Couple more hours.

1:15 They are starting to close. Everything is going well, should be about one more hour. Amazing I complain about how long it is taking, and we get some good news. Looks like Louise will not spend the night in the ICU and will go straight to the epilepsy unit.

2:10 Louise is closed up, they are now putting on the dressing. She should be in recovery shortly.

2:30 Louise is now in recovery. The surgeon reports that everything went really well. We will be heading straight to the epilepsy unit with no need to go to the ICU. Looks like it is punch pizza tonight, well maybe we should see how she feels.

6:30 Louise is sleeping peacefully in her room. We got out of surgery at about 3:00 and came straight to the room. The EEG technicians hooked Louise up to the machines and we have now entered the next phase. Louise has 8-10 leads coming out of her head for a total of 80 contact points.

As they were putting things together it looked like this scary mass of spaghetti, but no it is all bandaged up and out of the way. We have been told to expect Louise to be pretty out of it for the next 24 hours. Apparently things should start to get better pretty quickly starting on Sunday.

I left the hospital at about 8:30 tonight to get some sleep. Prior to leaving Louise had woken up and talked to us a little and watched a little Curious George. The pain medication was starting to wear off, so the nurse gave her a new dose and she went back to sleep. We have been told this is going to be typical for the next couple days.

The doctor has said that Saturday will be the worst for pain, but she will feel better on Sunday. He said that for people Louise's age, once they start to feel better, it is typically a fairly quick recovery.

While we were having dinner in the common area, two of the moms and kids that are in the epilepsy support group came up to visit. It was really cute watching one six year olde, who had surgery last year go up and play with Dr. Frost who was finishing up his rounds. Here is a picture of Dr. Frost at the end of rounds.

Tomorrow Louise will spend most of the day recovering. She will also have a CT scan, that will help with the Image-Guided Surgery during the re-section. It turns out that the surgery system that they use at Children's comes from Medtronic, Gretchen's former employer.

If you are curious in what Image-Guided surgery is, there is an interesting article here.

Initiate Countdown

2007-05-30T21:02:00.001-07:00

Today the count down officially got started. Louise, Mom, and Gram (big Louise) went to the hospital where they did the pre-op MRI. The surgeon will use a technique known as Image Guided Surgery tomorrow. Todays MRI along with the fiducial markers that you see on Louise's head will allow the surgeon to be able to see exactly where she needs to be, even if she can not see it with her eyes.

Gretchen and I are so grateful that we live in a time and place where we have the people and technology available to take on this surgery. We feel so blessed that we get to do something that will probably dramatically improve Louise's long term prognosis. The fact that we can do it hear surrounded by friends and family makes it even better.

Tomorrow we head to the hospital for the grid placement surgery. During this approximately three hour procedure, the surgeon will place the electrode strips or grids directly on Louise's brain. Louise will then be closed up, leaving the grids in place. Wire leads will come out through Louise's scalp to allow interaction with the grid.

The next three days will give Louise a chance to recover from the surgery. We have been told to expect Louise to be fairly out of it, both from the surgery and from pain medication. On Monday, the plan is for Louise to begin the mapping procedure.

During the mapping, doctors will feed very low current into the grids. Through observation and discussion with Louise they will be able to determine exactly where Louise's functional areas are. Each mapping session will be one to two hours. The goal is to see the same results from multiple sessions.

During the mapping Louise will need to be alert and on her seizure medication. The goal is to do this without inducing any seizures. The next phase of the grid study is to watch some seizure activity. The doctors would like to see at least three seizures. With Louise this typically means that we will need to take her off her seizure medications. In the past it took about a week to reduce the medications and see the seizures.

Once the doctors have the results of both the mapping and the seizure activity, they will come up with a re-section plan. Gretchen and I will then meet with the medical team and we will make the decision what to do. Hopefully, in two weeks, we will be getting ready for the second surgery. During this surgery, they will remove the grid, and then re-section (remove) a portion of her left temporal lobe.

Typically we will be home from the hospital within four to five days of the re-section surgery.

Louise will have a nurse with her in the room all day long while she has the grid in, they never leave the grid patients un-attended. Gretchen or I will be available at all times, but the team has recommended that we not stay in the room at night. They have also said that sometimes it is best if we leave Louise with the staff during the day, every one needs a break.

Louise can have visitors, but we are trying to coordinate the visits so that Louise only has one group of visitors at a time. We are scheduled through the weekend, but if you would like to drop by, send an email to Gretchen or I and we will set it up.

At this point, we don't think that having Louise's class mates in the room is a good idea. It is a fairly stressful environment, and we just don't know how Louise or her friends are going to act. We will see how things go and adjust the plan as we learn more.

Bill, one of our boating/ski buddies left a great comment on one of the earlier posts. He said that he was looking for the white space. For those of you who have never skied in the trees, I wanted to give a quick explanation.

When you first ski trees, it is hard. Every where you look THERE ARE TREES. Every turn you make you run into a tree.

Slowly, you begin to see there are white patches between the trees. Then it happens, you find yourself just flying through the trees.

When you focus on the trees, you keep running into trees. When all you see is white space, the trees are no longer a problem. There are a lot of bad things to think about, but Gretchen and I are just trying to see the white spaces.

Check in tomorrow and I will let you know how things are going.

Memorial Day Weekend

2007-05-27T20:08:00.000-07:00

Before I get to the update, I just wanted to post a little note about privacy. You may find it strange that I don't use any last names and avoid most first names. I apologize, for that we love you all, and we do know your name. At the same time, Gretchen and I struggled with issues of privacy.

We know that we could make this a private blog, but then all of you would need to log in, and I know that most of you don't want to have another login. So we are going to provide as much info as possible here on the blog, but we will at the same time try to remain strangely anonymous.

We do monitor the comments or you can send an email to either of us if you would prefer to have things be a bit more private. The amount of support that we have gotten through this site and email, is truly over-whelming. We really appreciate it. It makes a difficult time bearable.

We had a really great long weekend. We went to a friends for lunch on Friday. Sam and Louise both got in a little astronaut training.

On Saturday, friends from the neighborhood came over for swimming. It was 70 degrees outside, but the pool was at 87, so we didn't hear any complaints. We then went to the neighbors for dinner and a bonfire. Thanks so much, for having us over.

On Sunday, it was a little cold for swimming, so we went fishing. Pop (master fisherman) showed the kids the fine are of using quesadillas to get those fish. This winter Pop and I upgraded the boat, and we ended up with Mr. Pike, the fishing machine. This weekend was its inaugural voyage and Sam and Louise loved it.

On Monday we had another fishing mission, and we got to spend more time in the pool. Then our friend from next door came over. Ben is a fifth grader and he will be moving on to the new campus next year. Ben and Louise have a really special relationship.

Tuesday, Louise's last day of pre-K. What an amazing year it has been: Field Trips, projects, stories, songs, and lots of friends. Louise started the year as a little girl, now she is a Kindergartener! Thank you so much to all of the teachers, you really are amazing.

Louise realized at bedtime on Monday that she was going to miss the end of the year picnic. She was a little bummed out until we came up with a Great Idea. We had a couple of friends over for a swim and pizza, and everything was just great.

Grid Simulation - Photos

2007-05-24T20:16:00.000-07:00

Gretchen took some pictures of the grid simulation. As you can see, Louise did a great job of sitting still and straight and not touching the dressing.

First we put on the electrodes. Typically they use a long acting adhesive which smells really bad. Dad had a great idea of using some aroma therapy to help block the smell which Louise dislikes. Dad also had a great idea not to be in the room when the tea tree oil was used.

Next comes the bandages. You have to sit up straight and tall and not wiggle around. The strap around her waist is the way she will be restrained for the entire time that the grid is in. She is actually locked in, and the nurse is the only one who has a key. For the entire two weeks, it is either this chair, her bed or one of four walks a day around the unit.

When the bandage goes on, everyone except Louise is gloved and masked. Once the bandages were on, Dad came back with Sam and a little punch pizza. My question is can a five year old survive for two weeks on juice boxes and punch pizza?

Clean dressing, dirty mouth, friends with dressings...

Grid Simulation - Success!

2007-05-24T13:37:00.000-07:00

Louise left the hospital at noon this morning having passed the grid simulation with flying colors. Mom put Louise to bed last night at the standard time and retired to the Lipschultz Center Guest Apartments that are located next door. According to the nurse, Louise only woke up one time, had a look around and went right back to sleep. She also went on a couple of walks as required and avoided touching her (mock) surgical dressing.

Gretchen and I met with Dr. Frost this morning and it looks like everything is on schedule for surgery next week. On Tuesday Louise will have a checkup and blood work. On Wednesday she will have an MRI done. This MRI will be used as a reference for the grid surgery which will happen on Thursday. Thursday evening Louise will either recover in the children's ICU or if she is doing well enough, she will go back to the epilepsy unit.

According to Dr. Frost, we should expect Louise to be fairly groggy, out of it on Friday, Saturday and possibly Sunday. Apparently a good portion of this time will be spent asleep. The plan is for Louise to begin the mapping studies on Monday.

scott

How Did we get Here?

2007-05-23T13:29:00.000-07:00

Well we are back into the hospital with Louise.

For those of you not in the middle of it, let me provide a review.

Louise, who is five now has epilepsy. Almost two and half years ago we initially diagnosed the epilepsy and began a process of going through the various medicines that are used to control seizures. Although we had some success, we were unable to gain complete control of Louise's seizures.

Starting in August last year, the seizures become more pronounced and frequent. We went through a new round of evaluation with the doctors at the Minneapolis Epilepsy Group in St. Paul. Based on the results of a new MRI and a seven day video EEG session, Louise was diagnosed with left side Mesial Temporal Sclerosis (MTS).

Did you know that these beds can go up and down? Not only that but the Video EEG unit has a great area for doing projects with friends from school.

These pictures were taken after almost seven days on the unit. During that time we continued to reduce Louise's meds, so that they could record a seizure. As we reduced her medication, we noticed that Louise's behavior improved quite a bit. Shortly after these pictures, we found out what life would be like without medication. Thank God for modern medicine and great doctors.

After an epic battle with the insurance company (thanks Gretchen), we were able to do a third non-invasive study. The magnetic source imaging (MSI) is a state of the art way to evaluate both the source of the seizures and what areas of the brain are are functionally responsible.

Louise was a real trooper for the MSI. During this study, Louise was required to lie quietly and not move for three hours, with no sedatives. Then she had to go back two days later for a sleep deprived EEG. Gretchen should be getting her mom of the year trophy any time for having a girls night out with Louise at the Mall of America swim park (how else do you sleep deprive a five year old?)

So now we know that Louise has a problem in the left temporal lobe, you may ask, what does the temporal lobe do? The temporal lobe is involved in a number of critical functions, but the two primary functions are speech and verbal understanding.

Since Louise is right handed, she should have all of her speech and verbal understanding in the left temporal lobe. One of the things that the MSI confirmed is that Louise has speech function on both the left and right. This is actually a good sign.

So what specifically is MTS? MTS is one of the most common forms of epilepsy, typically diagnosed in adolescents and adults. When someone has MTS it means that the doctors have determined that there is a structural issue in the temporal lobe. (many people with epilepsy have no apparent structural issue)

As you may know, Louise's first seizure was a febrile seizure when she was about 14 months. This seizure lasted for almost an hour. We have often wondered did this seizure cause the current issues? The best answer is, that they just don't know. Louise may have the structural problem, which triggered the febrile seizure. The febrile seizure may have caused the scarring that the doctors see in her temporal lobe. If you are interested here is a good article on the subject.

Typically if someone with MTS can not control their seizures with the first two medicines then it is unlikely they will ever get control. Louise has been through four medicines (plus some others that had side effects). Thats the bad news.

The good news is that surgical treatment of MTS is common and has been proven to be quite effective. Louise's case has been reviewed by the entire Minnesota Epilepsy Group team and as well as the United Neurological surgeons. They feel she is a good surgical candidate.

The surgical procedure is called a temporal resection. The goal is to remove the portion of Louise's brain that is the focus (starting point) for her seizures. The doctors want to get all of the 'bad stuff' without taking any thing that does something important. The best way to figure all this out is to do another study which is to do a Intracranial Electroencephalography (IEEG) or a Grid study.

The grid involves an invasive surgery to place 2-3 of these grids or strips directly on Louise's brain. Each grid can have 10-75 electrodes embedded in the plastic. Once the grids are in place the surgeon will close things back up and Louise will be taken back to the epilepsy unit.

Over the next two weeks Louise will be in a very controlled environment where they monitor brain activity and conduct tests using the grids. Louise will have a nurse in the room at all times and is confined to her bed or a chair in her room. She is required to do four short walks around the unit, with two adults holding on to her. During this time Louise can not be sedated.

As you may guess, we have concerns whether Louise will be willing to put up with the demands of the grid study. We have been working with a psychologist to train Louise, but it is a lot to ask of a five year old. So we are doing a grid simulation today and tomorrow.

Louise is having all of the fun associated with a grid, but no surgery. If she can tolerate the rules, then we will go ahead with the grid procedure starting on Thursday next week.

How are things going? So far so good. Gretchen was with her today and said that she has done well. Sam and I went to visit this evening and she was in good spirits and seemed to be enjoying all the attention. We fully expect her to be discharged tomorrow and for the surgery to happen next week.