ICU & Recovery

UPDATE:  9:35am

Hi All,

Everything is good.  The surgeon visited this morning on rounds and said that everything went well and that Meara did a great job.  

This morning she was having a hard time waking up from anesthesia so that they could assess her motor function.  They sent her to have a CT scan to check for bleeding in the brain.  Results came back fine, no bleeding.  Just the expected swelling.  The loss of motor function in the legs, arm, and hand on her left side is expected for now because of the swelling in the right side of her brain.  As the swelling subsides she should regain that function.  We'll also know in the next few days the extent of her loss of function on the left side of her face, tongue, and jaw.

She is stable, beautiful, and simply perfect.  She has her bone flap back in so besides the incision she looks just like herself before we arrived at the hospital.

They have cleared her to head back upstairs to Epilepsy Monitoring Unit.  Just like the last surgery we are waiting around for a room to open up.  She has also been cleared for a regular diet once she feels up to eating....which might be awhile based on last time.

People have been remarking on our strength and positive outlook throughout this.  An important piece of that is the support we have received from all of you.  Your prayers, good wishes, care of our Ainsley, on and on an on has been a huge blessing.  We could not have been in this place of peace if it weren't for every one of you out there supporting us.

Thank you for the love.  Thank you for the strength.  I'll post more on recovery as we get new information.  Thank you for following us throughout this.  It has helped us tremendously to be connected to all of you.

Love and Gratitude,
Aaron & Megan

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Hi All,

It's 2:18am and we are up in the ICU.  Meara is sleeping in bed.  She is beautiful.  She is peaceful.  She'll wake up in a few hours in a lot of pain but they'll give her IV morphine.  She'll be in a great deal of pain the next 3 days or so (same as after the first surgery).  These next days won't be very fun but at least we are through the resection and we can move on to recovery and therapy.

From here on out we will find out her deficits and enter the rehabilitation phase.  The therapists will let us know what that will look like in terms of intensity and how long we should expect to stay here in the hospital.

The surgery went just as planned.  The surgeon avoided any trauma to the blood vessels and he resected the entire area that they had in the plans.  We are grateful for your prayers and good wishes.  We are grateful for our amazing surgeon who is gifted and skilled at his work.  We are grateful for our friends, family, and strangers who held us in prayers and thought as we journeyed through this with our sweet Meara.

As Megan said tonight, we are halfway there.  We have a long road of recovery and therapy but our daughter is beautiful, and sleeping, and with us tonight.  We are so happy, and grateful, and at peace.

Love to everyone.  We just can't express how thankful we truly are.

Love and Gratitude,
Aaron & Megan

In Surgery

UPDATE: 11:05pm

Okay, the surgeon was able to resect all of the area that they said they would.  And all of her blood vessels are fine (the vessels were the risky part of this particular resection).  The surgeon is closing her up now and should be done in a hour.  He'll come talk to us then.  Bottom line, the resection went really really well.  As we hoped and prayed it would go.

I'll try to give a final update once the surgeon as spoken to us and after we've arrived at the ICU.  Your prayers and positive thoughts have given Meara so much throughout this entire journey.  Thank you thank you for being there for us and for giving us so much.

Love,
Aaron & Megan

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UPDATE: 10:10pm

Meara has remained stable and has not required more blood.  The surgeon is still performing the resection.  Another update in an hour or sooner if he closes her up before then.  The grids have been removed and sent to the lab for a culture (to test for infection).

More soon.  Love love love.  Healing and peace.

Love,
Aaron & Megan

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UPDATE: 9:10pm

Meara received a pint of blood because her hemoglobin was low before the surgery started.  The nurse said it is nothing to worry about.  They have started the resection.  More at 10:00pm.  Thanks everyone.

Love,
Aaron & Megan

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Hi All,

The surgery just started 20 minutes ago.  Just got a call from the OR.  The surgery was scheduled for 2:30pm but it got pushed back until now because the first case that our surgeon worked on ran late.  It is currently 8:15pm.  It will be about a 5 hour surgery so it will run in the early morning.  Please keep praying that the surgeon will have a sharp mind and be steady.

Douglas and Tifara brought Dakota and Cheyenne up to the waiting area to be with us and support us.  We are very lucky to have them in our life.  The strength that they have given us through community has changed our lives.

Chris and Dave are here with us tonight.  Sitting with us.  Giving us support and strength as well.  We are so lucky to have such amazing friends.

Well, I will update when I receive calls from the surgical nurse.  They should be about every hour but could be longer depending on how things are going. 

Love to everyone.  Meara, the surgeon, and everyone in that OR is wrapped in prayers and good thoughts because of every one of you.  It is working.

"If you send out goodness from yourself, or if you share that which is happy or good within you, it will all come back to you multiplied ten thousand times. In the kingdom of love there is no competition; there is no possessiveness or control. The more love you give away, the more love you will have." - John O'Donohue

I will be posting the updates during this surgery to this post (as opposed to creating new posts).  I will make sure I provide a timestamp so you can find it easily.

Love and Gratitude,

Aaron & Megan

Surgery

Hi All,

We had a visit from the cousins and sister again today.  Olivia and Audrey played candy land with Meara.  Ainsley is learning that she can't get into everything.  She isn't happy about it!  She's got a pretty narly teething situation going on so poor Aunt Mindy is being put to the task.  Thanks Aunt Mindy for taking such good care of Ainsley for us.  We know it is a lot of work.  It is worth it.  You are helping us a great deal.  Olivia and Audrey head home tomorrow.  We'll be praying for safe travels and a healthy start to the school year for the girls.

Meara had a visit from another dog named "Ollie".  This one was a girl and is a golden retriever/lab mix.  In fact, she came from Canine Assistance in Georgia, which is the same organization that provided "Quincy" (service dog) to my brother Ben. Small world.

Well, lots of details but I think it's better if I talk big picture.  The doctors finished the motor mapping today.  The good news is that loss of function may be limited to the face, tongue, and jaw.  Some of that can be recoverable over time with rehabilitation.  She won't get it all back but hopefully most of it.  That's the good news.  At one point they talked about the hand (which isn't as recoverable) so it is great news that they will be able to avoid that area.

So, for the hard news.  The area were they are resecting is in a difficult spot.  There are veins and blood vessels that criss cross in the area.  Simply put, it is an extremely delicate area to go into.  The surgeon came early this evening and explained that if something happened with the blood vessels then we are talking about more than the function listed above.  He also explained that there is higher probability of her losing some vision because of where they are going in the temporal lobe.  He also let us know that there is a possibility that this surgery will have not gotten everything simply because they are only able to map where the grids are on the brain and that some activity may be outside of that area. 

The Neurologists have been very clear with us that although they were able to avoid a lot of motor function with the resection area that the surgery itself (the location of the resection) is a lot trickier than the average resection and has higher risk.  The surgeon has done these particular resections before.  Please please please pray that he will be well rested, of sharp mind, and make the very best decisions as he performs the surgery on our daughter.

Here is what I know:  I'm not in control and we have to have faith.  We have each other.  We have the very best surgeon working on her.  And we have your prayers and support.  That being said, Thursday can't come soon enough.

The surgery is at 2:30pm tomorrow.  It will be a long surgery due to the complexity of the area they are working in.  It will most likely run into the evening.  We will spend 1-3 nights in the ICU and after that begin rehabilitation and therapy.

I will do my best to update daily on the blog.  I will probably post during the surgery to focus my thoughts on positive things and to unleash what our hearts are taking on.  One way I cope with stress is to write…

I know that we have said this repeatedly but we want to tell everyone again that we are so grateful for your love.  We are grateful for your prayers and positive thoughts.  We are grateful for our daughter and this journey which is helping us as a family to be stronger.  We are grateful that this journey has helped us be grounded, placing importance on the right things and letting go of other things that just don't really matter.

We love you, we appreciate you.

Love, Peace, and Gratitude,

Aaron & Megan

Surgery Date

Hi All,

Meara's temperature was a little elevated last night and today. So she wasn't quite 100%. 

The big news is that Meara's surgery is tentatively scheduled for this Wednesday at 2:30pm.  The doctors have been able to capture multiple small seizures and have enough information to move forward.  The neurology team did some motor mapping today but had to stop early on because it was causing too many small seizures.  They'll continue the testing tomorrow and let us know what they think her deficits will be.  That will kind of give us a general picture of what rehabilitation and therapy will look like after surgery.

Sammy and Carly came to visit Meara this morning! They had lots of fun with the activities they brought for Meara. They played with MoonDough, painted a wooden dog, and built towers (which they promptly knocked down).  It was great to see Meara playing with Sammy and talking like crazy.  Thank you Carly for bringing Sammy all the way down here and for taking the time to visit with us.  We are very grateful for your friendship.

Meara was so worn out after playing with Sammy that she napped while Ainsley, Aunt Mindy, Olivia and Audrey were here.  Ainsley was quite a handful but really playful.  

We also got a visit from Newman, he was a white dog that stopped by today.  What a sweet doggie!  He was wearing a Broncos jersey and was really patient and friendly.

Tomorrow is more motor mapping and then getting our room packed up in preparation for the Wednesday surgery.  Wednesday night we'll spend in the ICU downstairs.  Of course, this could all change.  It might take longer to get the motor mapping done which will necessitate postponing the surgery. 

Friends of ours here on the floor who were here for six weeks were finally able to go home today! Tori is a brave boy who is doing really well.  We are sending positive thoughts and good wishes to his family as they settle in at home.  We are grateful for the community and strength that they provided us.  Kimber, you and your husband are such great parents.  Tori is a very lucky boy.

Thanks to my Foothill peeps for all of the good wishes and words of encouragement.  I'm thinking about all of you a great deal right now.  Missing you as you start off the school year with the kids.

I'll keep this one short for tonight.  I'm sure tomorrow I'll have a great deal to talk about.  Thanks again to our family, friends, and the staff here at Children's Hospital for loving our family and especially our sweet Meara.

Much love, peace, and gratitude,

Aaron & Megan

Forward Motion & Princess Dress

Hi All,

Meara had a few small seizures so the doctors have something to go on.  They would prefer a full on typical seizure but they have something to conference about tomorrow.  The part of the brain affected is larger than we expected.  About 1/4 to 1/3 of the hemisphere (based on the small seizure information that they have).  It would be a resection in both the temporal lobe and frontal lobe.  The chance of success of total seizure control is higher when it is just one lobe that they are resecting but we won't let that get us down.  Also, we won't know what the part of the brain they are resecting controls (in terms of function) until they do the motor mapping the day before surgery.  So for now, we celebrate that a resection will happen at some point no matter what (as opposed to going in on the 22nd and removing the grids without any resection and any hope of seizure control).  We aren't going to focus on what could happen.  We are going to focus on the fact that the doctors are doing everything they can to help Meara have a good life.

Like I said, tomorrow the doctors conference.  They will decide whether to proceed with a resection on Wednesday or whether to wait for more seizures (gather more info) and wait it out until the 22nd.

Not going to lie, hard news to swallow.  Thank you for your prayers and for lifting us up.  It's just going to be one step at a time.

Lots of visitors today :) Lots of laughs and good energy filling the room.  Let's run down the list of VIPs:

Patti, Emily, and Lisa were here early (you know those teacher types).  Emily and Meara were having fun playing together.  Emily printed out coloring pages for Meara and put them in a notebook.  She also gave Meara one of her own dolls and made a really cool art piece with Meara's name that we can put on display. Thank you Emily for taking the time to make Meara such special things and for spending time with her when you come.  She keeps asking when Emily will come back.  Thanks Lisa for the goody bag and thanks to Martin for the CD.  I'm going to carve out some time tonight to sit down and listen.  I appreciate the words of encouragement.  I am looking forward to unpacking our rigs and making some noise. 

Mindy and the girls brought Ainsley to visit.  Thanks to Mindy and the girls for "The Lorax" movie.  We watched it several times today.  She loves it.  Thanks also for the books and coloring activities that you brought yesterday.  I feel like Ainsley is growing so much.  We are looking forward to being home with her again and putting her to sleep and waking up with her in the morning.  We are lucky to have family her to take care of her.

James ("Mr.B") and Jo came by again this afternoon and brought lunch.  Thank you!  Jo and Meara had an awesome time coloring, watching "The Lorax", and peeking out the window watching the Flight for Life helicopter come and go. Unfortunately, there were a lot of flights today.  Sending warmth and prayers to those families affected. 

While James and Jo were here Mrs. Hoskins showed up!  We LOVE Mrs. Hoskins!  She brought a beautiful Cinderella dress and a magic crazy wish wand.  Sweet!  Best part is that the dress opens up all the way down the back so she could wear it right away.  

And while Holli (Mrs. Hoskins) was visiting we had a visit from "Ollie" the dog.  I forgot to get a picture but he was a sweet dog and gave Daddy kisses.  He was some sort of terrier breed. Very good dog (very calm and gentle).

We are overwhelmed with the show of support and the visits that we've had.  It helps a great deal.  With so much uncertainty at the moment it is great to be distracted by meaningful conversations and smiles and laughs.

Thank you everyone for loving us.

Peace and Love,

Aaron & Megan

 

 

Balloons, Cookies, Cousins, Oh My!

Hi All,

Last night Megan pushed the button (pushing the button marks in the EEG where a seizure might have occurred, makes it easier for the techs to find the data) because she thought she saw a mild seizure.  After the Dr. looked at the EEG this morning, turns out she did!  She had a small seizure and then this afternoon we think she had another small one as well.  Hopefully this means that things are happening.  We still need full on typical seizures for accurate mapping to occur.

Mindy, Olivia, Audrey, and Ainsley came to visit.  Meara was really excited to see her Aunt and cousins.  Ainsley is in good hands.  Thanks again to Mindy for taking care of the babe for us.

Suzanne, Ana, and Kaley came to visit! Woot! Woot!  Ana and Kaley played with Meara and we discovered that the two balloons that they brought had high and low pitches.  There was plenty of goofing around and laughing.  I can always count on Suzanne to bring on the deep belly laughs and it was good to see Meara having fun with Ana and Kaley.  I am very lucky to work with Suzanne and very grateful to have taught Ana and Kaley.  Such great kids!

Chris came over again and we had good times enjoying dinner and laughing as well.  She brought us cookies and fruit.  We colored, watched Toy Story, and I think at some point the conversation turned to boogers.  Chris took a photo and video of me scratching my armpit with the balloon trying to make Meara laugh.   Guess I'm never running for office.

All in all, a very good day surrounded by good people and fun times.  We laughed a lot and although is sounds strange we are very excited about the possibility of seizure activity ramping up. Keep those prayers coming, they are working!

Deep thought for today:  Might it be possible that a circumstance such as the one we are in with our daughter has taken us to a place that we would have otherwise avoided?  In other words, this journey we are on, this journey of healing and awakening, could have been a path that we would have never taken.  Call Meara's epilepsy a imperfection, a mistake, an ailment, an affliction, whatever negative connotation you can think of.  I call it a gift.  I call it a blessing because it has made our family stronger and our love for each other deeper and more whole.  Time is precious.  It's important to spend our moments here working towards positive change and expressing our true gifts with one another.

We love the visits and the laughing and the positive energy that everyone is bringing into our lives, into this hospital room, into our hearts.  Grateful for all of you, near and far.

Love, Peace, and Gratitude,

Aaron & Megan

Grandma Heads Home, A Visit from Meara's Boys

Hi All,

We had another day without seizures.  Still hoping that tonight will be the night.  Keep your fingers crossed. 

Meara had some brain mapping done today.  The doctor spoke with us about where current "activity" is happening and what potentially it could affect in terms of motor/sensory function.  Meara's brain however has reorganized itself so they won't know for sure until they do a motor mapping test the day before the surgery.  At that point we will know with a level of confidence what kind of deficits Meara might have after the resection.  

There is a surgery scheduled for this Wednesday.  If Meara does't have seizures before Wednesday then we'll have to discuss with the surgeon if we still want to proceed with the grids.  If we do, then we'll have until the following Wednesday (8/22) to continue trying to capture seizures.  They will not allow the grids to be in for more than three weeks.  We need seizures to happen if we are going to try and remove the part of the brain where they are coming from.  Keep praying.

Sue ("Mrs. B)" came by and visited with us today.  She brought a starbucks gift card, yummy snacks, and activities for Meara.  Thank you Sue for taking the time to visit with us and for your generosity!  It was a wonderful surprise.  Your family has been so great to us these past five years.  We are so grateful for the Brittenhams in our lives!

My Mom headed home tonight.  She was worried about navigating DIA on her own but she made it to the plane just fine.  She was here for 2&1/2 weeks and did such an incredible job taking care of Ainsley.  We are grateful to have her in our life.  Thanks Mom for supporting us during this time.  We couldn't have done it without you and Dad here every step of the way.  Meara misses you already.

The Brittenhams came to visit tonight!  James, Bethany, Joe, Micah, and Ella all came and brought dinner.  The boys sat in bed with Meara and watched Gnomeo and Juliet while eating M&Ms and drinking capri suns.  It's the most excited I've seen Meara since she's been in the hospital.  Ella was walking around like a pro and playing hide and seek with the curtain.  At one point Meara was playing footsie with Joe.  Maybe I should be more worried about her, and less about the boys.  Micah and Joe brought Meara pictures that they colored to hang on the wall.  Thank you James and Bethany for bringing the kids down here and for bringing dinner.  Meara was so happy to see all of you.  We are looking forward to Sunday.

Thank you Chris for watching Ainsley at our house while Mindy and the girls arrive.  You've been there for us so much throughout all of this.  We owe you big time!

Aunt Mindy, Olivia, and Audrey arrive tonight to take care of Ainsley for us.  Mindy is here through the 19th.  Thank you Mindy for being there for us.  I know that it is a long haul.  It means a great deal.  We can't wait to see you and the girls tomorrow!

I want to speak for a moment about friendship.  One of my favorite authors, John O'Donohue, says it so beautifully "Real friendship or love is not manufactured or achieved by an act of will or intention.  Friendship is always an act of recognition…"  This is how I feel about our friends.  We are blessed to be surrounded by friends and family who love us so much.   We recognize the shelter and the depth that each relationship gives us and we are thankful, truly thankful for all of you.  

Thank you for healing, peace, and warmth.  We love you and thank you for your prayers, support, and strength.

Love,

Aaron & Megan