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!