There's No Time Like the Present

Here's my list of cliches that fit what's been going on:

Time flies when you're having fun.
No rest for the wicked.
Shit happens.

So, we've been busy, and then this happened:

After two years of not personally witnessing any visible seizures, Brennan had a small seizure that was so different from the tonic clonic (aka grand mal) seizures that he used to have.  He knew it was going to happen -- or at least he suspected it and was right.  It was brief.  His lips didn't turn blue.  When it was over, it was over!  It still sucked because it meant that he couldn't reduce one of his meds that he had been trying to reduce.  It still sucked because it means Brennan still cannot drive (not enough warning to pull over safely).  It still sucked because seizures suck.

Brennan had at least one more of this same kind of seizure, went back up on his meds, and now he's doing better again.  The only seizures that sometimes show up recently are basically an aura -- the same feeling he had before the seizure in the video that just never moves beyond that feeling.

But that's not all that's going on.  Brennan has been going to Phoenix College and working on Sundays (teaching at our synagogue Congregation Merkaz Ha-Iyr).  And he's tried a few times to improve his bowling game.

The rest of us are also busy.  Sophie is a sophomore in a Montessori program at a local high school.  Abby is almost done with her Montessori school and will join Sophie in the fall.  Alan works hard and always takes care of the rest of us (including buying two of everything).  And I have been helping the Epilepsy Foundation of Arizona with some volunteer advocacy.  I spoke at a Health Committee Hearing at the Arizona House of Representatives about a bill that would help doctors be able to prescribe cannabidiol (CBD) to patients with epilepsy if it is approved by the FDA.  The bill passed through our State Senate, House Health Committee, and will have one more vote before going to the governor's office.

And....on Saturday I will be traveling to Washington D.C. with a young woman and her mother to participate in Teens Speak Up!  This is the same program that Brennan and I went to D.C. for in 2010, only now they send teens.  Our day of appointments will be 7 years and 2 days from the day Brennan and I were there.  We were there while Congress was passing the Affordable Care Act.  Today, as I'm finalizing a few more appointments, I'm waiting to hear if ACA will be repealed and replaced.  I guess that everything happens for a reason.  And whatever doesn't kill us, we'll get billed for, and hopefully we'll still have health insurance to help pay for it.

Last, but not least:  Saturday is the Epilepsy Walk (AKA 5K for Epilepsy, but running or even walking isn't required).  Please consider joining our team The Rabid Squirrel Squad or making a donation.  It helps with programs like Teens Speak Up! and also the amazing wonderful Camp Candlelight.
Click HERE to join or donate.

 

I Fall to Pieces

As Brennan's mom I've been called brave and strong and many other words I knew I didn't deserve. We were all forced to try to be strong -- for ourselves, and for each other. In the beginning I didn't even try to fake it. I could be found in a heap of tears or asleep in a corner from the emotional exhaustion. Doctors who would come in to check on Brennan would notice me in the corner and ask if I was ok. I was not ok, but it was because my previously perfect child was NOT OK!  

I learned to adapt by learning how to hide my fears (someone recently told me that I make jokes as a coping mechanism -- I have no comment). I was so good at hiding fear that once when a Code Blue was called on Brennan the staff told me after that they had never seen such a calm parent. I was freaking the fuck out on the inside. I moved aside so the people who went to school for such things could do their work, I was sending messages on my phone to friends so I could panic in some way, but mostly I knew that freaking out didn't do anyone any good, but especially not my child. And it was all for him. Not becoming a basket case was all for Brennan. 

So what happens when it is me that falls apart physically?  I fall apart emotionally. 

After years of being told that I needed it, I finally started to feel like I needed it. I scheduled knee replacement surgery for my right knee with the plan to schedule my left as soon as I was recovered enough. I had tried to hide the pain of my arthritis for years, so many people questioned my decision to have my knees replaced. It was like being pregnant and having everyone start telling you pregnancy horror stories. I was already scared and didn't need to know about your friend who had it done and gave birth to a 12 pound baby. People, keep that shit to yourself!

I was so afraid of the surgery that the last thing I remember before the anesthesia hit was starting to cry and hearing someone in the room ask, "Is she crying?" in a tone that sounded like Tom Hanks reminding us that "there's no crying in baseball!"

Everyone that didn't have a horror story told me that I was going to be so happy that I did this and everything was going to be so awesome after. And maybe that will all be true. Someday. 

It's been a little over a month since I had my right knee replaced and recovery has been difficult. I had a few setbacks in the beginning that effected my ability to do the physical therapy as much as I should have (low blood pressure and pain management). 

But the biggest obstacle has been me. Me falling apart on a regular basis. Me questioning my decision to do this. Me feeling like I was failing at physical therapy (which I was). Me afraid that this new (and worse) pain was never going to go away. Me frustrated with my medication options and being treated like a drug seeking addict by every pharmacy (even the one that we've gone to for years for Brennan's medications). 

I feel horrible about my reaction to my situation. I make comparisons in my head about how much I've cried over my knee versus how much I cried in the last nine years of brain tumors and seizures and surgeries and codes being called. What kind of mother am I that I even kind of feel sorry for myself?  

I have no idea yet how this is going to turn out yet, but I am starting to feel better. I am hopeful that my recovery, while slow, is still moving in a positive direction (thanks to finally hearing my physical therapist and really trying to do my at home exercises multiple times per day).  

And people tell me I can do this. Some people have even used the words brave and strong. Some people, but not Brennan. I think he knows that those two things have little to do with it. 


The following is a really gross picture of my knee about 5 weeks post-op.  It's yucky looking, flaky, and has a fricken' dent!  

Sweet Spot

How many years ago now was the big medication change that had the effect of changing everything? It was the spring of Brennan's freshman year of high school. Ok...math.  Hmmm...it was just over three years ago.  That doesn't seem right.  It seems like it had to be more than that.  So about three years and three months and three days (or so) ago, we became less comfortable in our world. 

Just as a reminder...Brennan had a brain tumor removed at age 8 after having his first of many seizures. He was officially diagnosed with epilepsy at age 9 and was put on a few different anti-seizure meds. A few changes were made early on, and eventually Brennan was only on one.  The one med, Depakote, seemed to make Brennan's brain work a little slower, but did a pretty good job with seizure control. Brennan would go about 8 - 18 months between seizures.  They were so rare that they always shocked and scared us.  We called 911 for the first few and took ambulance rides to the ER.  Eventually (and with most of the credit going to Camp Candlelight and the Epilepsy Foundation of Arizona), we were able to witness a seizure and not fall apart and make it worse by inviting the fire department to our home for the party.  

Time started passing until we realized over two years had gone by without a seizure. That's when we began working with a pediatric neurologist to wean Brennan off the Depakote. We were just days away from Brennan off the Depakote when I heard a noise coming from his room.  He was having a seizure. We talked to Brennan's doctor and stopped the weaning, but didn't go back to the original dose.  The next morning Brennan had another seizure while I was driving him to school.  I took him to ther ER.  He went back on his full dose.  We were sure things would be fine again after that.  We were wrong.  

Depakote stopped working.  New meds - many different new meds.  New doses.  Seizures just kept coming. There were a few more times I would take Brennan to the ER.  I was sure the answers were at the hospital, but we kept being sent home. On more than one occasion we were told, "I know seizures can be frustrating."  Oh, they had no idea how much that pissed me off.  After sitting in a cold room with things beeping and having to tell Brennan's entire life story to everyone who walked into the curtained room because my son's lips turned blue during a seizure and I wanted a medical professional to help us, I knew the difference between being frustrated and something more serious. I wanted the professionals to not just acknowledge the "frustration" but to take us seriously and start helping us stop something I knew wasn't right.  I thought about dropping Brennan off at the ER with a note pinned to him that said, "Fix me."  I would pick him up after they fixed him!  Sounded like a perfect plan, but I never did it. I accepted being told the situation was just frustrating.  I would take my son home, make a follow up appointment with Brennan's regular epileptologitst, and hope for the best.  We also had the luxury of knowing Brennan's doctor's cell phone number (a lovely man that didn't deserve all the text messages from us, but we'll be forever grateful). 

Eventually there was a hospitalization with more med adjustments.  Brennan saw multiple neurologists and they all had their favorite go-to anti-seizure meds.  Brands were changed, and doses were raised. Then Brennan went some amount of time without a seizure and a lovely (but relatively new) doctor said, "I think we found the sweet spot."  It was Brennan and I in the room when that was said. We either just thought the phrase was funny or we knew it was total bull shit, but we joked about sweet spots after that (a little before the doctor even left the room). 

During one of Brennan's hosptializations he had a seizure where his oxygen levels were so low that a code blue was called. As difficult as that was, it felt like a relief to know that suddenly the severity of Brennan's seizures was not just an anecdote after the fact.  We were finally taken seriously.  We were set up with oxygen tanks to help Brennan when he had seizures at home or school.  I no longer wanted to abandon Brennan at the ER with the "Fix me" note, but when we did have to go back to the ER for an unbelievable number of seizures in one day, Brennan was seen immediately and he was hospitalized rather than being sent home.  

Every time a med change was made and a few days went by, we started saying that maybe we had found the "sweet spot."  We were hopeful and always wrong.  We stopped saying "sweet spot" unless it was in a whisper. When a seizure happened after a week gap or so, someone would ask, "Who said 'sweet spot'?"  

Then Brennan had the big surgeries The ones that was supposed to stop (or drastically reduce) tonic clonic (grand mal) seizures.  (There's so much more about the surgeries in previous posts.). Instead of the miraculous "no more seizures ever" that we heard other people had, we saw another code blue. A few more post-surgery seizures and even the previously optimistic doctors started looking defeated and sad. Brennan was released from the hospital with no real hope for a seizure free life.  Seizures did seem to be less severe and we stopped needing to give him oxygen.  He started having auras (a feeling that sometimes happens that warns someone they are going to have a seizure), and would sit or move to a safer area. 

As a parent, I was relieved that things were better.  Not perfect, but better.  And none of us ever said "sweet spot".  Except that we talked about not saying "sweet spot".  At some point Brennan's youngest sister, the one who can be very matter of fact, said something to me about how ridiculous she thought we were.  I wrote down what she said because I wanted to remember it and I wanted to be convinced of its truth.  

"If you believe the surgery or meds are working, you can't also believe if you jinx him that it will suddenly stop working."  

The kid made some sense.  It wasn't what we said or believed that would make Brennan better.  It wasn't if he was a good or bad person, or if we were (don't talk to us about karma). Either the surgery worked, worked a little, or didn't work.  Either meds worked or didn't.  But you know, we still don't say "sweet spot." 

                  *********                  *********                  *********                  *********

Brennan has not had a tonic clonic seizure in enough months that we can't even remember when he had his last one.  Maybe last December or January. Over six months.  Not quite a year.  He still has a type of seizure that is basically the feeling of an aura but with no seizure that is noticeable.  No loss of consciousness.  No falling.  Brennan hates them because he's aware of them.  The rest of us are relieved because he doesn't get hurt, he doesn't stop breathing, and unless he says something we can't even tell they're happening.  The doctor calls them "non-debilitating." They aren't the kind of seizure that would make driving unsafe.  Pretty awesome if you are the parent.  

Brennan graduated from high school in May. He is enrolled at a community college just a few miles away from us and starts in a couple of weeks.  Alan and I took our first no-kid vacation since this entire adventure with Brennan's brain started almost nine years ago (we went to Sonoma and fell asleep for about 14 hours the first night and then drank a lot of wine - we needed the sleep and deserved the wine!). I don't think we're taking this current situation for granted. It's just such a relief to not have to worry or be as vigilant as before and to see our few-months-shy-of-18 child be just as obnoxious, on the verge of change, and amazing as other people his age.  And that is so sweet. 

Just Short

Today could have been the day that I said Brennan has gone two months without a seizure, but instead we started the clock over on Saturday. Brennan was playing basketball with friends in front of our house when he had the tonic clonic seizure. He didn't get hurt.  It was brief.  He didn't need oxygen and he knew his buzzword quickly. I wasn't home, but Alan was. 

I am both disappointed that Brennan had a seizure (I want 100% seizure freedom), and relieved that there was an almost two month break in between.  In those nearly two months we stopped feeling the constant anxiety of regular seizures (calls from the school to remind us of a day off still raise the blood pressure until we hear the recorded message). Alan and I had a weekend to ourselves in Scottsdale (kids were with their older cousin). Brennan spent a day by himself walking to a less-than-mile-away mall and went to a movie and then walked to his school and a park near the school (the last two places were not our list and like an ordinary teenager he got a lovely lecture).  

Now I will continue to put pennies in every fountain I pass, make wishes every time there's a shooting star or my clock says 11:11, plan my exact desire to ponder when blowing candles when I turn 46 next month, and will of course beg with every prayer for Brennan to be able to live his life seizure free. Or at the very least that we make it to the whole two months and then longer. 

1

"If the surgery or medicine is working you can't make it suddenly stop because you jinxed it."
                                                                                 - Abigail

So it is with joy and only a small, probablyirrational, amount of superstitious fear that I announce that as of today Brennan has been seizure free for one month!

The last seizure was just before Brennan was one month out of surgery and the same week he started another new medication.  That means we really don't know if maybe the surgery did work (to stop or reduce seizures), or the right medicine was finally found, or a little bit of both.  We don't know if seizures are reduced or if this is the beginning of some serious seizure freedom.  We just know that Brennan has been seizure free for one glorious month.  I hope, pray, beg, etc. that this continues.

Holding Our Breath

This surgery journey wasn't as easy as I hoped it would be.  I knew I would be scared during each of the surgeries.  I knew that waiting for Brennan to have the six seizures would be difficult, because seizures always are, but especially the fast seizures from medicine withdrawals, but I didn't really anticipate just how much seizures after surgery were going to break my heart.  

Brennan has had about 20 seizures since the surgery that we were hoping would stop them all together. They have been a different kind (more of an absence seizure with very little shaking), and they have been the typical (for him) tonic clonic.  A few have been as short as 30 seconds.  With most of them he stopped breathing temporarily.  And we almost always did panic more than we should considering how much experience we have all had.  It was just different though.  Every seizure was the wind being knocked out of us and a reminder that this surgery does not have a 100% success rate.  

At Brennan's follow up appointment with the surgeon he reminded us that he has seen patients have many seizures after surgery and then go on to have a reduction or elimination of them.  The next day was Brennan's birthday and he had a seizure during his birthday dinner.  The next morning Brennan had a small seizure (he couldn't remember and I didn't see it, but we're pretty sure because of his confusion when I walked into his room and found him resting in his bed), and then he went back to school after being gone almost a month.  

The weekend after Brennan went back to school was the Phoenix Walk for the Epilepsy Foundation of Arizona.  It was an amazing day.  We had friends from school, life, work, our synagogue, and our neighborhood make donations, walk with us, and showing us (yet again) their love and support.  Brennan had another seizure that night.  He had two more the next day.  He slept a lot that next day - he had one of the seizures while resting his head on my lap.  He was exhausted.  That is pretty much how Alan and I feel also - just drained.  

There have been a few things that have kept me from feeling like I'm drowning.  One thing has been taking care of myself - exercise.  The biggest thing has been Brennan's attitude.  He has always handled everything with a calmness.  It's hard to be discouraged when the person that this is affecting the most doesn't seem to be bothered.  He was more bothered by us, or so we thought.  Lately Brennan has been finding it more difficult to act like everything will be ok.  He has admitted that he has been scared and sad and angry.  He's a teenager, so scared, sad, and angry hasn't always been pretty.  I'm sure that I don't know what I'm doing on a good day, forget about a day when things are mixed with real, appropriate for the situation, scared, sad, and angry emotions.  

I am still going to the gym, but not 5 days a week like I had been and Brennan isn't always cheery at the same time as we are feeling less and less confident that the surgery had any impact at all.  Somedays I want to just pull the covers over my head and stay in bed all day (and I know Alan feels the same because on top of everything else he is super busy at work).  We keep busy and we carry on (I know we're supposed to keep calm, but busy works better).  

Thanksgivikkuh (the Hanukkah/Thanksgiving mash-up) has kept us busy, but in a nice family and friends way.  We are trying to navigate emotions that have been denied for some time.  We are making plans for the unknown future and talking about a seizure dog again, and trying new meds.  And it has been about 10 days since the last seizure.  We are now 5 days past the one month mark after surgery.  In some ways this is the scariest time of all.  Any seizure now will mean more.  I am afraid to breath. 

Brennan & Me at the Phoenix Epilepsy Walk

The Rabid Squirrel Squad Walking With Brennan

The Rabid Squirrel Squad Team Photo

Thanksgivikkuh With Mindy, Morgan, & Brooke Rector

    

  

16!

Today is Brennan's 16th Birthday.  We are still hoping for the best for Brennan.  We had a follow up appointment with his surgeon yesterday and he said that he is still feeling optimistic. 

The doctor said more than that, but I needed Alan to interrupt for me.  I understood "abnormal" (or Abby Normal if you are familiar with Young Frankenstein).  Today Alan explained more and then wikipedia helped the rest.  

Cortical dysplasia is a congenital abnormality where the neurons in an area of the brain failed to migrate in the proper formation in utero. Occasionally neurons will develop that are larger than normal in certain areas. This causes the signals sent through the neurons in these areas to misfire, which sends an incorrect signal. It is commonly found near the cerebral cortex and is associated with seizures. Medication is used to treat the seizures that may arise due to cortical dysplasia. Increasingly, surgery has become a viable treatment option for appropriate candidates.

(http://en.wikipedia.org/wiki/Cortical_dysplasia)

About a Week & a Half

Brennan has been home about 11 days and it's been an interesting 11 days.  At first he was full of "I'm home!" energy and then suddenly he wasn't.  So day 1 & 2 were great.  Walking around, made a visit to his old school to pick his sisters up, and looking good.  Maybe it was too much excitement, but also the meds side effects started showing up again.  He was throwing up by Wednesday morning and then stopped eating much.  That lead to a general weakness and then to top it off on Wednesday evening he had a seizure while sitting at dinner (not eating).  It was the new kind of seizure - more of a absence or petite mal type of seizure, but also not exactly.

Thursday was more weakness, unsteady, not feeling like eating.  It was also Halloween - a big deal at our house.  Brennan dressed in modern Frankenstein's Monster type clothes and Abby did some makeup (including more scars to go along with the ones he already had.  We didn't think Brennan would be able to Trick-or-Treat much, but maybe visit some of our nearby neighbors.  While we were getting ready Brennan was handing out candy with his dad.  That lasted a few candy grubbing kids and then Brennan stopped and Alan could tell by the look on some poor kid's face that Brennan was having a seizure (sometimes we can tell by the look on someone else quicker than just watching Brennan).  It was again mild, but effective in cementing our standing as Scariest House on the Block.  Brennan rested the remainder of the night while adults took turns walking around with the other kids and handing out candy.  

Things did start getting better after Thursday.  Brennan started eating and getting stronger.  And this thing that Brennan has had on his face for probably a year started getting bigger!  So, on Monday I took Brennan to an Ear/Nose/Throat doctor and the lovely staff partially drained it and sent me home with instructions to drain it more (they put this wick thing in it that is being pulled out in stages - I'm writing on the blog right now to avoid the final pulling out).

Squishy/spongey blob thing on Brennan's face.

Brennan also went to an appointment with a physical therapist on Monday.  He'll be working on some eye exercises and just general strength while walking so that he'll be better able to handle walking around school when he goes back (probably next week!).

So, there you have it...recovery has been an interesting journey with no grand Hollywood ending, but we are still hopeful and today has been a good day!

Home.

Brennan was released from the hospital today!  Less than one week after brain surgery and we are all home.  Brennan is still walking slow and unsteady.  He'll be sleeping near us until we feel more comfortable or we'll be sleeping near him until he's more comfortable (years of co-sleeping when he was a baby and again when he was 9 make it not such a big deal to have our children near us when we sleep).  School will wait.

Sophie & Abigail

As much as this is about Brennan, this is about his sisters.  What happens to him has impacted their lives significantly.  I am not sure that sisters could love a brother any more than Sophie and Abby love Brennan.  

Sophie's love shows with the tears and emotions she shows whenever Brennan isn't doing well.  She will run and hide, but she will also cry.  She just doesn't know what to do when things aren't as we know they should be.  It hasn't gotten better.  Sometimes she puts on a brave face and tries to be part of the team that we turn into when Brennan has a seizure - someone stays with him, someone runs for the oxygen, and if there's another person, the pulsox machine is brought too.  Occasionally Sophie will run for something and bring it right to the person who stayed with Brennan.  Other times she will stand only so close and be unable to move close enough.  I knew that seeing Brennan in the hospital would be the most difficult for Sophie.  She never really wanted to visit.  Phone calls and texting was perfect.  When we brought her to the hospital for her first visit she stayed in the bathroom for awhile, complained about being sleepy, and curled in a ball on the little couch.  The next visit was after surgery and I suggested she stay on his left side since the scar might be difficult for her to see.  She hid in the bathroom, complained about being sleepy, and eventually she came around and looked at and talked to Brennan.  We all laughed about inappropriate jokes and it was good.  

Alan recently described Abby as the kind of person that takes you as you are, and that includes her brother.  There is no warming up to his scar.  She has never panicked when seizures happen (she's been known to wave us off like she's got it all covered).  She adapts games to whatever his ability is for the day without saying a word to him about it.  She just bounces over to him in the same way she has always bounced through life - except for the moments that she is setting someone straight about something she feels they need to be set straight about.  She isn't going to take shit from anyone and she isn't going to let the situation with her brother take anything away from them living (she's the one that begged for me to let them go on bumper cars just minutes after Brennan had a seizure at the Arizona State Fair).  

And Brennan loves his sisters.  More than once Brennan has told me that if it had to be him or them to have epilepsy, he would rather it be him.  

  

Abigail, Brennan, & Sophie

Quick Update & Another Graphic Picture

The first few days after surgery were hard on all of us.  We had hoped for Brennan to be in the "never to have another seizure again" camp, but that didn't work.  Thursday was two seizures, but they were scary for us.  Friday he had about 5 more seizures, but they were less severe.  His oxygen levels stayed up, he didn't have his typical shaking, and he could remember who we were and his buzzword right after the seizures.  We still weren't happy that he had any, and we were relieved that he was given a rescue medicine to stop the cluster from continuing.  That worked for the rest of the day, last night, and so far today.  

After the seizures stopped Brennan wanted out of bed.  Alan was with him and they walked around the room a bit.  When I got back later, there was some more walking.  One of the doctors encouraged him to at least sit in a chair rather than in bed when he wasn't walking around.  When I started to head out to see the girls for a bit a physical therapist came in and was getting ready to evaluate Brennan and see what help he might need to get him going even better and more steady.  

This feels like the road to recovery (only better, right?).  I don't want detours, but I don't always get my way.  

***

Next week is Halloween.  Brennan will be his own version of Frankenstein:

Define Recovery

I looked it up and recovery means returning to normal.  So, I will not ask for Brennan to recover if his normal is what it was before surgery.  I want him to be better than he was before.  I want recovery to his pre-2006 self.  I am always afraid that I have to be very specific when I make a wish or say a prayer.  I want him cured.  I want him to live a happy and healthy life without seizures.

We were told that he could have seizures after surgery and that it didn't mean that the surgery wasn't successful.  Think about it...his brain has been poked and prodded.  And it already liked having seizures.  So just because the areas causing his seizures could all be gone, other areas might be irritated. That's one reason why continuing meds is important.

It is one thing to know this and another thing to have seizures happen after surgery that is supposed to stop them.  We were warned, but it doesn't make it any easier.  We even know of stories of people who (in the doctor's words) had a flurry of seizures for the first month and went on to be seizure free.  I didn't want a flurry.  I wanted Brennan to just be done with seizures.

The day after surgery was good.  I was worried about the night, and that went fine too.  Today didn't go so well.  One seizure in the middle of the day.  A full blown tonic clonic (aka grand mal).  Brennan has a tendency to have his oxygen levels go down just after the seizure ends.  His oxygen level fell all the way to 2.  That's the lowest I've ever seen it.  The nurses called a code blue, which brought a room full of doctors and nurses, but Brennan's oxygen levels started to go up and nothing like intubation needed to be done.  He had one more seizure this evening and again his oxygen levels went down, but not quite as low (in the 20s is still scary).

We will not let this get us down.  It's not the easy recovery we were hoping for, but that doesn't mean it can't be better.  We'll just wait.  And we'll be very specific with what we want the end results to be.  Brennan, get better.  Heal fully.  Feel yourself surrounded with all the love and rest a bit so that your brain becomes better than it's normal.

Wednesday!

Surgery is over!

I wanted to start with the most important part.  

Last week we expected the second part of the surgery to be on Friday, but it was moved up to today.  That became the theme.  It was supposed to be today at noonish.  Last night we were told 8am, and they'd come get Brennan around 7.  By 5am today we were starting to get ready to be taken to the surgery floor around 6:30.  Didn't matter.  It's not like any of us were getting much sleep.  I was at the hospital with Brennan and Alan was finishing up some work to free up his day that he wasn't expecting to be spent in the surgery waiting area.  It is way better for surgery like this to come earlier than expected than having to wait for a postponed surgery (that's what it was like on Oct. 23, 2006).    

The first thing Brennan's doctor did when he walked into the consultation room was hand me a small bag with the grid in it.  I had asked yesterday if I could have it when he got to the part of his talk when we were asked if we had any questions.  I thought maybe I could make earrings or something out of it.  I have learned that doctors aren't going to hand over something that had been in your kid's head if the surgery hadn't gone well.  Very well.  We won't know exactly how well until later.  Sometime between a month and a year or so will be how long it might take to be able to say how successful the surgery was.  But it went well, and that is a great place to start.  

Brennan had one last pre-op (and potentially ever) seizure this morning.  It was the staring spell (AKA absence/petite mal) kind that Brennan recently started having.  Nothing dramatic.  There was no shaking, no loss of consciousness, and he even knew his buzzword (after a tonic clonic seizure it could take 1-30 minutes for Brennan to know his buzzword "basketball").  I wasn't even in the room for it!  Alan was witness to it, but it was just like one he had yesterday.  I can take non-dramatic.  I embrace boring.  Excitement isn't all it's cracked up to be anyway.  

Here's to a whole bunch more boring days ahead!

This is the grid that I will be making something out of.

After surgery Brennan was taken to the ICU for the night.  He was sleepy, but a doctor was still able to ask him questions about where he was, what day it was, etc. and he could move his arms and legs.  Mostly he just wanted to sleep.  I went to go pick the girls up from school.  A friend was going to do it, but I really wanted to see them in person and share the news with some people at Brennan's former school.  We even ran into his pre-school/kindergarten teacher.  She had no idea he was scheduled for surgery, but said that she had been thinking of him a lot lately.  

Soon, I'll head back to the hospital and I can't wait to give Brennan hugs that weren't possible with the stuff he was connected to before (like cables we couldn't pull because they were attached to his head).  

Almost Wednesday

Around 8am Wednesday morning I will try to make Brennan laugh right before he gets wheeled off for the second brain surgery in less than a week.  I will show him with my eyes that everything is going to be ok and there is nothing to worry about. It will just feel like seconds have gone by when he wakes up and then he'll get to scratch his itchy head finally. It will be awesome.

***      ***      ***      ***      ***      ***      ***      ***      ***

The doctor said that he can't make any promises, but he feels good about this.  The 6 required seizures were all in the same general area, and all inside the area of the grid.  Brennan couldn't just make it so simple. He had about 4 more seizures that were all different than his typical ones (more of absence seizures) and were even in a slightly different area. Still nearby, and still in the middle of the grid (not being on the edge was a good thing). So, the doctor can go a little further out and hopefully still get all the naughty spots out.  We were told that seizures could increase for a short time and not to get down about it.  That's just the brain trying to adapt, but we will try not to let it by continuing meds (but hopefully less so there are fewer side effects). Meds will continue for "at least" one year.  Probably longer (hey, we're a bit paranoid since it was an attempt to wean that started this whole mess about 18 months ago).

I pray, I beg, I plead that this cures my son.

Do Not Pull

on Cables

Connected To 

PT's Head

Happy Anniversary!

Wedding anniversary present for 7 years?  It might depend if you want to buy something from the Traditional or Modern list, but apparently the gift for the 7th anniversary of brain surgery is brain surgery.  The first surgery removed a tumor and we're hoping that this surgery removes seizures!

Brennan's surgery (the second part of the one done last Friday) was originally scheduled for this Friday, Oct. 25.  Things got moved up because Brennan excelled in having the 6 seizures the doctors wanted to see, and the doctor is available earlier.  The date change will increase our chance of being home for Halloween.  I'm guessing Brennan will have a pretty authentic costume if he's going as Frankenstein (I have no idea what his scar is going to look like, but it will not be across his forehead.  He'll be a more modern version of Frankie).

No time to worry about costumes.  First we have a very important date for noon on Wednesday, October 23, 2013.

Brennan sleeping the morning after he had 6 seizures.

Well rested and happy.

Brennan's Brain (Really!)

Surgeons like to perform surgery and non-surgeons like to prescribe medications (or just not perform surgery).  We learned that from watching the TV show Scrubs and also from our experience with the doctors who have seen Brennan in the last several years.  When Brennan started having seizures again after the nearly three years of being seizure free his first neurosurgeon suggested surgical options - including the procedure Brennan is in the middle of now.  Brennan's neurologist was like, "Hey now...let's make sure that we've exhausted other options because surgery can't be reversed."  

Brennan had absolutely no interest in surgery.  And the neurologist had a good point.  Some new medications were added and one that seemed to stop working was slowly eliminated.  There were changes in medications to try to reduce side effects that were as bad as the effects of seizures.  Eventually the neurologist gave us the news that if 3 or so different drugs are tried and don't work the chance of any drug working are very slim.  He was suggesting that surgery may be an option.  Brennan did not like that and for a few days after that news was in a serious funk.  

I wanted to put my hands on my hips and say in my stern voice, "You are having surgery!"  But that never worked to get him to clean his room and this was surgery.  This was cutting in to his body.  This was not something that would come with a do-over.  We kind of ignored the issue directly, but eventually scheduled Brennan to be monitored in the PEMU (Pediatric Epilepsy Monitoring Unit) at Phoenix Children's Hospital.  We wouldn't even know if he might be a candidate for surgery without the monitoring.  It was about a week in the PEMU - long enough for Brennan to have 3 seizures - to determine if the seizures were all coming from the same general area.  

During the time Brennan was in the PEMU he started to recognize that sometimes he had an aura (sign that a seizure was coming).  His right hand would feel cold and numb.  The area that was suspected of causing Brennan's seizures was the area that had the tumor removed back in 2006...it was on his right side.  Auras should be on the opposite side of where the seizures are starting.  Also, the epilepsy monitoring didn't show that well the areas where the seizures were starting.  But the doctors that reviewed the information still thought that the seizures were coming from the right side, and it was decided that a consult with a new neurosurgeon would be scheduled (Brennan's previous neurosurgeon moved to a different hospital, so we decided to find someone with Phoenix Children's Hospital).  

By the time Brennan had his appointment with the neurosurgeon he'd started having unpredictable seizures - sometimes as many as 6 in a few days, but mostly about 3 every week.  He had them at school, home, the grocery store, the mall, while playing basketball, while playing ping pong, while sitting, while standing, while playing Monkey in the Middle, on weekends, on weekdays, in the morning, in afternoon, etc.  Brennan was no longer angry about the idea of surgery. 

Brennan did admit that he was scared but he said, "I survived the first time."  We asked him if he'd feel better if he talked to someone who had gone through the same surgery.  He liked that idea.  We were connected with another family with a 17 year old son who had the same procedure just a few weeks earlier.  Alan spoke to the young man's mother and we tried to figure out when we'd be able to get together, but we weren't able to before Brennan's surgery date.  Brennan said, "I just like knowing he survived."  

The parents had a blog where they posted some pictures of their son's CT scan with the grid implanted. It helped me to see that and get a better idea of what to expect.  So, this is my long winded explanation for the photos I'm going to be posting.  A few of the photos are graphic.  Those are photo's of my son's brains.  I was bothered by them at first, but the operation was still going on when they were shown to us.  I've gone from feeling queasy to being in awe of it.  If you lean only to queasy, then now is the time to stop looking and maybe watch a YouTube video about kittens.  

This is Brennan when he was in the pre-op area getting ready for surgery.

This is Brennan's brain.
You are looking at the inside of the right side of his head.
The dark spot is the hole where he had the tumor removed in 2006.
(Brennan's face would be to the right of the photo.)  

This is Brennan's brain with a the grid placed.
The grid has little electrodes to detect seizure activity - specifically where they start (called the seizure focus).   

The day after surgery they take a CT scan to make sure there are no brain bleeds.
You can see the grid placement.  It seems like it's on the left, but it's actually on the right.

Another CT scan photo.
This one is looking down on the area.
I won't describe what I think is shown because I will then need to look at more kitten videos to feel better again.  

This is Brennan resting today.
He's still pretty tired from having 6 seizures yesterday and all the pharmaceuticals given to him to stop any more.  

We're all feeling about that wiped out...

Today, as Alan mentioned, was the motor mapping.  Instead of it being puppet master (tickling the electrodes to make fingers or toes wiggle), it was seeing if any of the tickling could interrupt movements.  Brennan's one and only job was to be annoying...he had to keep tapping his finger on the plastic thing the doctor put under his hand (an unused bedpan!), and occasionally stick out his tongue (he threw in trying to give me the finger on the sly, but that wasn't because he had to).  During the constant tapping and the periodic tongue sticking out, the doctor tickled parts of Brennan's brain and there were no changes to the parts that were supposed to be moving and also no unexpected movements in other areas - all good news.  That just means they can't predict with more certainty that there will be weaknesses in areas during the removal of the areas causing the seizures (doesn't mean it won't happen, but it seems less likely).  

Since the seizure focus seems to be on the right side, the testing was all on his left side.  And it wasn't expected that the area controls any important functions, but for a variety of reasons, including Brennan's previous tumor, there was still the chance.  It's even less likely that the area would affect Brennan's language, but there still may be some testing done to check that.

Tomorrow a bunch of doctors will gather in what they call the Epilepsy Conference to discuss what the next steps are.  No one has said anything for sure, but there has been some hinting that removal (or resection) of the seizure focus is going to happen.  There isn't just one itty bitty area, but a few itty bitty areas in a cluster that they would need to figure out how to remove.  Apparently there are options on how to do it, but that sounded like that part was left up more to just the surgeon.  

I'm afraid to feel like we're finally on some kind of homestretch.  I know it doesn't work like that.  But so far, there hasn't been any definite bad news.  And that feels good.  Better than YouTube videos with puppies.  

A Few Words From the Dad

Alan’s first attempt at blogging.

October 19:  Time for seizures.  Brennan had brain mapping surgery yesterday.  Today the doctors want to see six seizures to determine where the seizures start so they can decide if they can perform additional surgery to remove the brain areas causing the seizures in hopes of ending the seizures or drastically reducing them.  Rough day for Brennan he has never had six seizures in one day.  Number 1 occurred at 7:41 a.m. while in the ICU with Karen (before I arrived).  They moved Brennan to the Epilepsy Monitoring Unit where they will watch him round-the-clock to analyze the seizures.  As we are learning, the doctors like to see a “buzz” from the brainwaves on the EEG to pinpoint the seizure.  Brennan didn’t cooperate and the first seizure did not have a buzz.  I hung out with Brennan while Karen took Sophie and Abby to the “Trashion Show” to show off Karen’s incredible recycled dresses made from maps, postcards, and grocery bags (she is so creative) modeled by Abby and her BFF Eryn.  In the meantime, Brennan did not disappoint.  He had Numbers 2, 3, and 4 with me (one had the buzz).  Good news so far, the first three seizures are in the same vicinity near the prior tumor resection area.  Karen arrived and we both hung out with Brennan for Numbers 5 and 6 (the last one at 9:55 p.m.).  The doctor already left so we have to wait until tomorrow to know if the last three seizures were in the same area – keeping our fingers (and toes) crossed.  Again, rough day for Brennan.  He is so brave and courageous.  As I have repeatedly said, he is my hero!

Alan’s post script:

October 20:  Good news.  The doctor is back and has looked at the last three seizures – all in the same area (although not the same exact focal point).  Next step:  The doctor is going to play “puppet master” today.  He will electronically manipulate the electrodes on the mapping in the seizure area to see if they relate to important functional areas (for example, motor or language functions).  Hopefully not, and then they can determine if surgery is an option.  Abby told Karen she wanted to push the buttons to make Brennan move his arms and legs like a puppet.  We know which one is the twisted sister!

Karen will provide further updates.

Good News

Waiting to hear was not easy. It wasn't a long wait, but when it's this important it's forever. The doctor said the seizure started in the area with the grid!  They wish it was more precise and they'd love to see seizures with Brennan's aura (right hand goes cold and numb, but it's the right hand and that's more likely to be from a seizure starting on the left side which is not where they think Brennan's are starting).

They want to see 5 more seizures. Well, I'll bet my kid won't disappoint!

They are letting him rest today and tomorrow they will do something called motor mapping. That's the puppet master stuff where they tickle his brain and make him move stuff and also ask him to move stuff and see if they make it stop. They'll also test language. The biggest risk is probably left leg weakness.

We're moving from the ICU to the PEMU (Pediatric Epilepsy Monitoring Unit) in the next few minutes.

7:42 AM

I didn't ask a lot of questions before Brennan's surgery. It was easier to be calm if I didn't know much and could just act like my son having brain surgery was as routine as a dentist visit (actually those freak me out also, so I don't ask much then either). 

Because of my lack of questions I end up surprised a lot. I wait for the information to be offered and I digest it bits at a time. Brennan has a catheter. That makes sense!  Brennan might be very out of it for a few days. That won't be fun because it will remind me of the time when he was little and unresponsive from constant seizures. Brennan will have a swollen face, black eye, and may not be able to see out of the black swollen eye. That won't be easy to see and not freak out and we were told to warn him so he isn't freaked out. 

Well, my kid was awake and pretty alert just a little bit after we were allowed to join him in the ICU. And his face looks fine.  Not much more swollen or bruised than it was already from the seizure he had last week on a hard floor.  He isn't happy about the catheter. So far that's his only complaint. 

All the doctors mentioned yesterday that they wanted Brennan to hurry up and have seizures. It would be better to do one before a CT scan. It would be better before they do some stuff where they basically tickle the thingies left in his head to make him wiggle toes and fingers and test language.  (Another thing I didn't ask about - I assumed they weren't doing that because no one mentioned it.)

Alan left last night to go home and get sleep. I stayed with Brennan - which I will do most nights because I don't want to miss anything (funny for someone who embraces denial, right?). Brennan and I slept well for a hospital sleep. I have gotten used to frequent beeps of machines. He falls back to sleep pretty quickly after nurses come in and assess or adjust pillows or turn off alarms. I did catch that some alarms were for blood pressure or heart rate. Sometimes they'd adjust Brennan thinking he was just uncomfortable. Other times they asked what he was dreaming about (should anyone ever ask a teenage boy that?). No middle of the night seizures to effect my heart rate and keep me up. 

Brennan did bolt upright in bed around 7:42 this morning. It surprised me because it looked like he was ready to jump out of the bed and he can't do that having his head tethered to a bunch of computers. It took a few seconds and one mom voiced "Brennan!" before I realized it was a seizure. Yay!  A seizure!  Never so relieved to see a seizure. I did my job of pushing the little red seizure button then I opened the door to make it easy for nurses to come in and join the party. We've been warned that they won't do anything to stop a seizure unless it's over 5 minutes unless we want them to (crap, leaving decisions up to me doesn't seem like a good idea).  This morning the seizure was brief and not too scary. You know, for a seizure. 

After the seizure Brennan went downstairs for a CT scan. That's routine to check for brain bleeds and any Junior Mints that may have fallen in. We are waiting to hear about the results of the CT and for the big news of where the seizure started. Please, oh please let it be from the area with the grid!

Looking Good

Surgery is over and we've had two consultations. First doctor showed us pictures of Brennan's brain where the hole is from the removal of his tumor when he was 8.  I know I'm biased, but damn good looking brain!  Or not. Gross, actually. I did get to take pictures of the pictures. I wonder if Brennan will be changing his profile picture on Facebook.

Second consult was with the surgeon. He said the surgery went well with very little blood loss. It will be about 30 more minutes before we see Brennan in his ICU room. We've been told Brennan will be groggy for a few days and by tomorrow the right side of his face will be swollen (again...he just had the goose egg from face planting Tuesday during a seizure). The doctors are hoping for seizures quickly. All of our hopes are riding on the thought that the seizures are coming from this one area. If so, good news. If not, then ... who knows...

A Positive Outlook

Brennan wrote this last year for school:

I am Positive

I am Positive.
I have had a lot to be mad or sad about.
What can you do, shit happens.
But overtime I stay positive.
I have had terrible things happen to me.
I try to enjoy life for what it’s worth.
Sometimes I wonder if my god is just pissing on me just for the fun of it.
When people ask,
How I stay as strong as I am?
I really just don’t know what to tell them.
Sometimes I just don't see myself as strong.
Sure, I have gone though some scary shit,
If you saw it you might just crap your pants.
If you asked me how I stayed strong I would answer I am not strong, 
I am positive.

I have gone through life and always been an optimist 
hell, I still am 
even after all the shit that happens to me.

I only am typing this to you readers because 
I can’t tell you what will happen next.

The door I go through could lead to several different rooms
preferably to a bright, colorful room full of life.
But it could lead to a dark, morbid room lifeless and full of pain.

What has happened to make me like this?
The past happened. We can’t change it.
But the past is not what is making me so down,
But the Future, 
and even worse the Possibilities of what it might hold.

Now you see and say there’s Cheerful Phil
But really I sit deep in the shadow of fear.
Fear knowing I can’t ever escape my weakness.
Because shit just follows me every where.
But you know what?

Shit happens.
Yet I am optimistic.
More importantly, I stay Positive.

Surgery #1

Brennan has been in surgery for about 1 hour. I know he was scared. Maybe concerned would be a better word. For he last day or so he's been quiet at times like he has a lot on his mind. He never really said what he was most worried about.

I tried to act as calm as possible so he wouldn't think there was anything to worry about. I don't think the surgery itself is what worries me. My biggest fear is just that it won't work. I have other probably totally irrational and not worth mentioning fears, but la-la-la-la I'm not listening to those.

About 2-3 more hours.

The doctors and nurses seemed happy and well rested. And they drew an X on the side they were operating on. It will all be good.

Brennan's Rabid Squirrel Squad

Rabid Squirrel

A few years ago we met Rabid Squirrel and he's become a mascot for us.  I mean who would mess with a rabid squirrel?  He was one of the many taxidermy animals in a cabin we stayed in with some friends one summer.  It was one of those magical summers where kids ran around in the rain (hey, we live in Phoenix, so rain is a very big deal to us).  Our trip included standing on a corner in Winslow, Arizona, driving by the WigWam Motel and wishing we'd planned ahead so we could stay in one of their teepee rooms, and buying rocks we didn't need near a really large green dinosaur statue.  Like I said, a magical summer.

So, when we needed to come up with a name last year for our walk team for the Epilepsy Foundation of Arizona's Phoenix Walk, we knew we wanted to use the Rabid Squirrel in the name - a reminder of all things good with a sprinkling of serious rabidness.  Last year the theme of the walk was movies and Brennan had just been in the play A Few Good Men (the movie was based on the play). We called our team "You Can't Handle the Squirrel!"  

This year we are calling our team Brennan's Rabid Squirrel Squad.  The Squirrel Squad is for any one who wants to support Brennan by supporting the Epilepsy Foundation of Arizona which has supported us in so many ways:

• Camp Candlelight - A one week summer camp for kids with epilepsy.  I can't say enough good things about this camp.  It has been a nice break for Brennan, and a learning experience for all of us.  Brennan's last year as a camper was this past summer.  We're hoping he can be a Counselor in Training next summer.  
• Epilepsy Empowerment Group - A once a month meeting for people with epilepsy and their family or support system.  We laugh, we cry, we eat yummy pastries from a Polynesian recipe, and we are always leave feeling not so alone in this crazy world of seizures.  
• Friends - We have met so many amazing people through the Epilepsy Foundation!  On occasion the foundation has asked one of us to call a family who has a child newly diagnosed.  From those phone calls I've gotten to meet some pretty remarkable people.  Other people we've met through the Empowerment Group, and others from the years of Camp Candlelight.  Having other parents to talk to and seeing our son talk to other people with epilepsy has been such a blessing.  
• Kids Speak Up! - I know it's been a few years since Brennan and I went to Washington D.C. to help lobby on Capitol Hill, but the memories still make me smile.    

Anyone who can walk with us on November 16, please join the team Brennan's Rabid Squirrel Squad. If you just want to donate, we'd appreciate that as well.  You too can be part of a bad-ass group of Rabid Squirrel type people that will look epilepsy square in the eyes, with just a little froth around your mouth, and tell it that you are going to do everything you can to let seizures know that they aren't the boss of us!