Archive | March, 2014

The Well-Meaning Stranger

Today, a stranger overheard a conversation between me and some women about David’s epilepsy and upcoming surgeries.  The details she heard included things like “seeing specialists in Cleveland for epilepsy” and “multiple brain surgeries.”

She interrupted our conversation.  “Excuse me.  I know your son has seizures.  My son had some fever seizures.  We used Frankincense oil and he has never had a seizure since.  You really need to….”

As I stood there, trying to politely smile and nod, I couldn’t help thinking, “Doesn’t it seem like someone needing brain surgery might have a different set of circumstances than what you experienced?  Do you really think I would subject my son to BRAIN SURGERY without doing my homework?  Without relying on the advice of the smartest and best doctors on this subject over a number of years?  Do you really think I’m ignorant as to the other possible treatment methods?”

I wish she would have said things like, “My son had some seizures.  I’d like to know more about your experience.  What interventions have you tried?  What have you found that works?  What does not work?  What do your doctors suggest?  Maybe something I’ve tried might be helpful to you.”

I think we all try to be helpful to others.  One of the main reasons this site exists is the hope that our experiences might help others.  But, we’ve probably all been guilty of getting caught up in giving some really great advice that we are certain will help someone that we forgot about listening to the other person and learning about THEIR experience first.

I love the verses of scripture found in Alma 7, in the Book of Mormon, that say, speaking of Christ:

 11 And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people.

 12 And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities.

“That he may know…how to succor his people according to THEIR infirmities.”

Next time I happen to be that well-meaning stranger, I hope I remember to ask and listen first.

 

 

1

The Plan

Getting ready for the MEG scan

Getting ready for the MEG scan

We have a plan!  David’s first surgery will be in four weeks and will be investigative.  Instead of placing a grid onto David’s brain, they will do a Stereoelectroencephalography…or SEEG.  The SEEG is used when the epilepsy source is difficult to pinpoint and is suspected to be deeper in the brain.  In case any of you get a little queasy reading details regarding medical procedures, I will forgo an explanation of the surgery.  If you want to know the exact details, click on link below.  The doctor in the video is the doctor who will perform David’s surgery.

 Stereoelectroencephalography – SEEG

The SEEG places probes in David’s brain.  David’s brain activity will be monitored for one to three weeks in the hospital.  The length of the monitoring will be determined by the doctors as they record information from the probes.  After sufficient information is recorded, the probes are removed (a simple procedure) and David will be sent home to recover.

After eight weeks of recovery at home, and assuming the information gained from the first surgery indicates that David can have the next surgery, we will return for the resection surgery.  The resection is where they remove the brain tissue causing the seizures.  That stay should only be about a week.

Dr. Sweney

Dr. Sweney

Tonight I am thankful for our neurologist in Salt Lake, Dr. Sweney.  We could have done this process in Salt Lake.  When we decided we wanted to be at the top surgical center for David’s situation, our neurologist in Salt Lake was completely supportive.  He told us that Cleveland would be the best place for David.  The doctors in Cleveland know Dr. Sweney well.  They feel deep admiration and respect for him.  His guidance has been a blessing to us over and over again, particularly in regards to the testing available here in Cleveland that is not available anywhere else.  The only facility in all of North America that has the SEEG technology is here in Cleveland.  So, thank you, Dr. Sweney.  Thank you for blessing our life.  (You should also know that Dr. Sweney is from Nebraska.  I’m sure that is a huge part as to why he is so fabulous!)

In case you are wondering how the strategy worked out of keeping David up late and waking him up early…..it was awful!  He was a tired, mad, grumpy 5-year old who was too tired to cooperate and not only wouldn’t go to sleep, but wouldn’t even hold still for the procedure.  Awesome.

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He Matches the Tears….

Science and Space Museum

Science and Space Museum

David’s final non-invasive test is tomorrow morning.  The goal is to test David during a natural sleep state (meaning no sedation.)  So, tonight he is staying up late and tomorrow we will wake him at 5 a.m.  Let’s hope this doesn’t back fire and simply turn him into an overly tired 5-year old who just gets mad and won’t fall asleep!

After the test, we will meet with our doctor.  We are anxious to know what plan the surgical team came up with during their meeting today.

We have been praying that the doctors will receive guidance from the Lord on how to best treat David.  I believe that God can inspire our minds.  I believe that he can inspire the minds of the doctors caring for David.  I don’t know what the outcome will be, but I know it is in God’s hands…and that is enough for me.

 

“Even if you cannot always see that silver lining on your clouds, God can, for He is the very source of the light you seek. He does love you, and He knows your fears. He hears your prayers. He is your Heavenly Father, and surely He matches with His own the tears His children shed.”
― Jeffrey R. Holland, Created for Greater Things

 

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The Blessing of Ordinary

Last night we went to a mall!  You might think that sounds like a very ordinary thing to do.  That is precisely why it was so wonderful.  It made me feel ordinary again.

At the mall, I thought about ordinary things.  I thought about throwing pennies into water fountains.  I thought about how I can’t stand eating Chinese food from a mall food court, but that David loves it.  I thought about how exciting it was that the mall had an Athleta store!  I thought about how cute a dress in a store window would look on my mother-in-law.  I thought about how Will would love the LEGO store.  I thought about how I might need new mascara soon.  I felt ordinary.

I think I did not realize what a blessing it is when life is ordinary; to worry about piano practicing and homework, to wonder who my child’s teacher might be next year, to wonder if I should paint a bedroom a different color or not.  Ordinary stress is real stress.  Ordinary challenges are still challenging.  But, they are wonderfully ordinary.

I am thankful for the ordinary.

Children's Museum

Children’s Museum

Newell K. Whitney Store, Kirtland

Newell K. Whitney Store, Kirtland

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Super David

Super David

Super David

Super David

Super David

Allow me to introduce you to the newest super hero…SUPER DAVID!  My friend, Janet, and her family sent David a super hero cape and mask, along with a card.  David loves them.  He wore them to help him be extra brave on his way to another test yesterday.  Thank you Cherrington family!  The cape is also reversible.  The other side is a BYU Cougar!

They released David from the hospital last night.  (We will stay in the area until Wednesday because David has more testing next week.)  As soon as they removed the electrodes from his head he ran and ran and ran around the floor.  He was so excited to be free!  Then he discovered the game room.  It was pretty funny watching him run around and play while wearing his superhero costume. image

Tyler’s mom flew in yesterday to join the crew.  Thank you, Kathryn!  She will be fully initiated tonight as she volunteered to stay with David.  What a great mother-in-law!  Prayers for Kathryn that she might get some sleep, too!

David spent today playing with the other children here at the house, doing crafts, and blowing bubbles outside.  We went to the Natural History Museum, as well.  Most of the museums around give the Ronald McDonald House free passes for the families staying here.  David loved being free!

Monday morning, all of the doctors on the epilepsy neurology team will meet to discuss David’s case.  The team consists of two pediatric neurosurgeons, the pediatric neurologists and some other people I don’t remember.  They will start to develop a plan for surgery for David.  As of yesterday, they thought the plan might be that we finish David’s testing next week, then go home for a few weeks before coming back for surgery.

Tyler flies in tomorrow to be with us.  David is excited to have daddy coming.  I am excited to have daddy coming, too.  (Sorry the Huskers lost in the tournament!)

Thank you to everyone helping with our other kids while we are out here.  Thank you for keeping them happy.  We are thankful for the local football team who made dinner tonight at the Ronald McDonald House.  (Five burley boys grilled chicken, cooked pasta and sauce, made garlic bread and salad for us.  They do maintenance and meals regularly around here.  Really sweet.)

We are especially thankful for the safe arrival of my sister’s baby this morning!  Welcome to the world, sweet Piper!

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It’s Complicated….

“A very complicated case….”  Those are the words from our doctors regarding David’s situation.  Our neurologist at home told me once that if he could give David a different type of epilepsy, he would.  I understand better today why.

Our brains have two hemispheres.  There is a division between the two hemispheres.  If you were to go down into that divide and then go to the right…that is where the tests indicate David’s seizures are located.  That part of the brain is also the pain sensor of the brain for the lower part of the abdomen.  The location correlates with how David’s seizures manifest.  David describes his seizures as “a shark biting my tummy” or “there is a bomb in my tummy.”

I admire this team of doctors.  The more they discover about David’s situation, the slower and more methodical they become about their approach. Yesterday, they talked about possible surgery next week.  Now they are wanting to wait for two weeks to have more time to think and to ponder.

From a parent’s standpoint, I cannot express the gratitude I feel for the seriousness with which they are considering David’s care.  The flip side is that they are pondering and thinking so carefully about David’s situation because it is complicated.  The reality weighs heavily on my heart.

David has another test tomorrow that will last most of the day.  They will keep him in the hospital until Friday because of a medication change in preparation for surgery.  Then, we will hang out in the area until Tuesday when David has one more test (unless an opening comes up earlier.)  We will fly home and then come back a week and a half later for “invasive investigation.”  That means they will open the skull for more testing.

Even after opening his skull to do the invasive investigation, they may not be able to remove the brain tissue causing the seizures because of its location.

Tonight, I am thankful for prayer.

4

Seriously?!

I want to write a letter to the makers of the hospital sleeper chair.  You know, the chair that becomes a bed…that thing you should be able to SLEEP on…the bed meant for the sweet, loving, caring, emotionally exhausted caregiver who is at the bedside of an ailing loved one.  I spent the better part of the night wondering why these haven’t improved in the last 20 years.  We live in a time when better technologies are discovered every day.  Why not an improvement on these things?

At first, I wondered if the manufacturer of these chairs is a fraternity of men who only intend them to be used in maternity wards.  They must consider them a rite of passage for first-time fathers.  Then I wondered if perhaps the manufacturer is a childbirth sorority who wants some subtle torture devise for their husbands.  Maybe they figure since they just gave birth, there is no reason their husbands should sleep soundly.  Either way, can’t they isolate them to the maternity ward and let the rest of us sleep in peace?!

Since I was awake, it did not phase me much that David was up a lot during the night, too.  David had three major seizures between 2:30 and 3:00.  Then, at 4:30, the nurse woke him to give him seizure medication and at 5:30 they did a blood draw on him.  (They do the blood draws when the kids are still sleeping because most of the time the kids don’t even notice.  David woke up a bit, but not much.)

The sunny side of the long night was that because David seized during the night, the EEG readings were clearer.  When David seizes during the day, he thrashes around more so the EEG is harder to read.  From the nighttime seizures, the doctors had a little better view of where they think the seizures are located.

PET scan

PET scan

This afternoon, David had a PET scan.  They injected a sugar mixture into his blood stream that will show up in his brain.  The part of his brain not working correctly will not look the same as the rest of the brain with the sugar mixture.  We will get those results in a couple of days.

A HUGE thanks to our magician, Jason Alan!

A HUGE thanks to our magician, Jason Alan!

Our special visitors today were Jason Alan, a local magician, and his wife, Stacey.  David loved trying to do the magic he watched Jason performing.  I think David’s favorite part was seeing one red ball become two red balls…and then two red balls become three red balls.  Amazing!  Jason was great!  Thank you so much for making David’s day brighter!  If anyone is going to be in St. George, UT in the first part of August, Jason will be performing down there.  You can check out his website at www.JasonMagician.com.

Tonight I am thankful for a mom who was willing to take a turn on the awful torture devise at David’s bedside so I could sleep in a real bed.  I am also thankful for Amazon.com for having a twin size blow up air mattress that will arrive in two days to replace the sleeping chair!  And I’m thankful for a little magic in our life!

Jason Alan Magician

Jason Alan Magician

Jason Alan Magician

Jason Alan Magician

4

MRI and EEG

This morning we met with Dr. Lachwani.  What a kind man.  I kept wanting to hug him.  Aside from being kind, I felt he listened well.  He asked for every detail I could think of and took copious notes without ever losing eye contact with me.  He thoroughly explained the process we’d go through while here and asked repeatedly if I had any additional questions, answering each question carefully.  I’m glad he is part of our team.

After meeting with Dr. Lachwani, David had a sedated MRI on his brain.  (They sedate him because he can’t hold still long enough to get a good scan.)  One nurse brought David a wooden train to paint while we waited and another nurse played Connect Four with David.  They were great!

imageMy favorite part was when the anesthesiologist came in to show David the mask that would help him go to sleep.  First, she let David play with the mask.  Then, she let David smear the inside of the mask with flavored Chapstick so the mask would smell like a flavor instead of smelling like plastic.  Instead of choosing just one flavor (grape, watermelon, orange or bubble gum) David chose all four flavors to smear around in the mask.  He had a great time.  Here is a link to a video of David working with the anesthesiologist…. IMG_0295

Directly after his MRI, the EEG technician came down to start putting 23 electrodes on David’s head to prepare him for the long-term EEG.  First, she used a tape measure to measure and then mark his head with a green pencil where each electrode would be placed.  I was impressed with the precision.  Then, she cleaned (more like scrubbed) each spot marked on his head before placing the electrode.  After placing each electrode, she put a glue covered mesh on top to keep each electrode in place.  She had a little dryer…kind of like the air blower the dentist uses while working on your teeth…to dry the glue.  Lastly, using a syringe, she squirted each electrode with lotion to help it get a better reading on his head.  It was quite the process.  But, these electrodes need to stay in place for a 3-5 days.  So, they have to be secure.

Electrode placement for EEG. (He was just coming out of anesthesia, so he was a little groggy.

Having electrodes placed for his EEG.

Electrode placement for EEG.

Now we are in the epilepsy monitoring unit.  David will be here most of the week.  He is hooked up to the EEG and to an EKG 24/7.  He is also monitored by video camera all the time except while in the bathroom.  (His bathroom is right next to his bed.)  David’s wires reach into the bathroom and to the sink, but not much further.  The EEG electrodes never come off of his head.  That way, the doctors collect brain activity every moment.

While in his bed, we built a train track, played the ipad, assembled puzzles and David helped Grandma try to master Stack the States.  By the end of the week, Grandma is hoping to be as good as David at that game.

David and Grandma working on dinosaur puzzles.  (Thank you, Janis!)

David and Grandma working on dinosaur puzzles. (Thank you, Janis!)

Whenever David has a seizure, we push a red button and nurses come in and take notes.  They are wonderful.  They support him through the seizures (since he is awake and aware and afraid,) and help in every way possible.  David had a bunch of seizures this afternoon.  We kept the nurses busy.

I told Tyler that I feel like I’ve already been here a week.  The doctor stopped by the room tonight to talk with me about what he saw on the EEG from the seizures David had today.  The conclusion is that David is a complicated case.

Because of the way his seizures happen, the EEG shows a huge electrical storm of activity.  The doctor is ordering all of the non-invasive tests they can do to try to pinpoint the seizures.  He talked extensively about how he and his team will evaluate the data over as much time as they need to get to the right conclusion for David, even if that means weeks and weeks.  Please pray that they can pinpoint his seizure source.

Tonight I am thankful for nurses who played with my boy like a child and not simply as a patient.  I am thankful for a neurologist who was kind and patient and thorough.  I am thankful for an anesthesiologist who did not rush smearing Chapstick on a plastic mask; who laughed and smiled with my son.  I am thankful for nurses who had sweet voices as they worked with my son during his seizures over and over again.  And I am especially thankful for a doctor, who came back to the hospital at 10:30 at night, to find a mom to tell her about the EEG he saw today about her son.

18

Ronald McDonald House

On our way to Cleveland!

On our way to Cleveland!

We arrived safely in Cleveland this afternoon.  Thank you to everyone who gave David gifts for our trip.  They entertained him nicely on the plane.  We brought an entire suitcase full of toys, games, books, puzzles and snacks for David given to him by friends.  Thank you!

Tonight we are staying at the Ronald McDonald House.  I admit it is nicer than I thought it would be.  I expected it to be a bit tired.  But the house is great.

The entire main floor is living space.  There is a kitchen that is the size of a small cafeteria.  It has six ovens, a number of massive refrigerators, big tables for families, cupboard space you are welcome to use, a TV, plastic golf clubs for kids to play with and it is fully stocked with all the kitchen supplies you need to cook your own food if you want.  Plus there is food you are welcome to all of the time.  Almost every dinner and most lunches are provided by different groups.  Tonight, a group brought in a St. Patrick’s Day dinner….three different entrees (two corned beef and cabbage variations and one casserole,) two different soups, salad, a veggie tray, a massive fruit platter plus a huge fruit bowl, drinks and tons of St. Patrick’s Day treats.  We really appreciated the fresh fruits and vegetables in addition to the meal.

The rest of the main level is living rooms, game rooms, sitting rooms, computer rooms, more play rooms for kids and a full Laundromat.  Everything you need to do your laundry is available in the Laundromat and is included at no cost.

We spent the entire evening on the main level.  Children ran around playing with each other.  One child was attached to a medical pole he pushed around while playing trains with David and some other children.  Lots of kids with masks over their mouths to prevent them from catching anything.  One little guy had just had his 19th brain surgery.  He is six years old.  He has had brain cancer his entire life.  Tough.

image

Ronald McDonald House

The rooms take up the entire second level of the house.  There are 55 rooms in the house.  They are all like hotel rooms with two full beds, a table, a dresser and mini-fridge and a bathroom.  The rooms are bare bones, but clean and nice.  We will have a room here during our entire stay.  Someone will always be sleeping with David at the hospital while the other family members will stay at the Ronald McDonald House.

To stay at the Ronald McDonald House, they ask families to pay $20/night, if you can.  If you cannot afford it, you can stay for free.  What a great charity!

I admit it has been emotional for me to grasp the fact that I actually checked into a Ronald McDonald House.  I’m not sure I have fully come to terms with it.  Ronald McDonald houses are where “other” people stay.  “Someone I know” stayed at a Ronald McDonald house, but not me…right?  But, now we are those people.

Tonight I am thankful for Ronald McDonald houses.  Thankful that they lift the financial burden of staying in hotels.  Thankful for the good food provided by the community.  Thankful for all those organizations and people who donated computers and toys and kitchen items and everything else to make this a good place for us to stay during this time.

I also want to say a huge thank you to my  mom for her help.  She made the plane ride and the airport and everything so much easier for me.  I really appreciate her help.  She also made David a special blanket just for this trip.  I love you, mom!

Sleeping with his new Cars blanket from Grandma.

Sleeping with his new Cars blanket from Grandma.

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Counting Down

This weekend we leave for our “adventure” in Cleveland.  My mom, David and I will be going for the first part of the trip.  Tyler and his dad will be home with the other kids until we know if David will be able to have surgery or not.  If David can have surgery, then Tyler will fly to Cleveland to join us.  His mom and my dad will also be coming out.

Monday, David will meet with Dr. Lachhawani, the neurologist.  David will also have an MRI and then be admitted into the hospital for a long-term EEG.  All of the initial testing will be to “map” David’s brain.  They want to see if the seizures originate from the same place every time or if there are multiple sources of the seizures.  The long-term EEG consists of David being connected to the EEG machines for however many days it takes to get good data.  They also video monitor him so they can see how the seizures manifest themselves.  (It is my understanding that the physical manifestation of the seizures can help them know which part of the brain is being affected.)

While David is hooked up to the EEG machine, they will also do a PET scan.  After a seizure happens, a cold spot appears in the brain.  The PET scan is looking for that cold spot.  The hope is that the PET scan and the EEG show the seizures coming from the same place.

After those tests are done, the doctors will decide if they need to do additional tests and how to proceed.

Thank you for all of the prayers, meals, notes, and support.  We really appreciate the help!

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