What's Post Brain Surgery Like?

Ben is much better at describing what it's like after brain surgery. (Like someone drilled a whole in my head!) He would tell you that most of his days are okay. Especially after the anesthesia and surgery, I guess most days are way better than that!

Physically

• Lots of intermittent fatigue, consciousness, and sleepiness. Here's my husband who acts and looks like himself while watching the Sochi Olympics and can engage in clear and coherent conversation like we might if it was a restful Sunday. Then, the tiredness hits, and the next thing I know is he's out in full on sleep mode. It does not take long for him to fall asleep in the rocking chair with Teddy. We're hoping with a few days, he will continue to recover bits of energy. We're planning on keeping activities small with Teddy going to daycare during the day while we do a few chores, appointments, and rest.  
• The pain either changes or has a few different layers. The numbness must be wearing off. Even though he's stayed consistent with a treatment regimen to manage this inflammation and pain, what he complains about changes. 

Emotionally

• "Holy Tamale, I've had brain surgery!" It's still pretty shocking. You may think one would know this going in, but it's not like riding a bike where you remember the experience. Even though he already had one episode of brain surgery to create a new CSF passageway and biopsy the obstruction, you are clearly not awake for it, clearly not active in much of the event, and pretty much only remember everything the anxiety and side effects of the treatment. 

Medication 

• Do you have a pill box and a timer? This one needed help with the multiple medication regimens they sent him home with. Five titrated over the first few days and were related to each other. He's still using the Tylenol to manage the pain. He hasn't requested or received any pain medication since the hospital. Having someone who hands you food and medication helps- his fatigue does influence his motivation to obtain medication. 
• We're glad that ours locks as hard as it does, but sometimes the force to open it has chipped three nails already and sent medication flying. It's a scary thought as a parent, and honestly sends you into slight OCD check-recheck moves.  

Having a Toddler

• Feeling like you've been benched because you've been in the hospital is probably the hardest emotion. Teddy certainly squees when he sees Ben and gave us incessant dah-dah's while he was hospitalized. He's very curious about the scar on dad's head, but he's also giving him a little bit of room because of the fatigue. Give it a few more days without Nana and Pops and with dad on the mend, we'll probably see a change again like last time. 
• Use their downtime for yours. I don't care if it's laying down, sleeping, or putting away laundry (which seems to be in large quantities these days). Use it. 

What Helps? 

• Jokes, cards, e-mails, videos, pretty much anything to fill in the conscious time. So many of you have rocked it, please keep it up. It really makes a difference to know you care! 
• Regular life - we still care about you! It helps to hear what you're doing, enjoying, annoyed by, or mastering!
• One big calendar and an excel sheet for all of our follow-ups. There is no easy system to track this information, and I am in awe of families who master the art of scheduling, whether its kids and karate or older couples with multiple appointments. 
• Peer navigation. Those who have known someone or been through a brain tumor diagnosis - wow and thank you for speaking up. The community is so small, the public information so scant that your insight is incalculable. 
• Forgiveness that we are not 1:1 on follow-up.