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Monday, January 19, 2015

Favorite Things: Brain Surgery Recovery Edition

Alternate working title: What to Expect When You're Expecting Brain Surgery: Part II. 
For those of you interested in reading Part I, it can be found here

Usually, my idea of preparing for something involves...not preparing. I am a baptism-by-fire sort of girl and it's served me well for the majority of my life. However, as my brain surgery date drew nearer and nearer, I felt a compelling need to organize and prepare for my recovery period. With no real idea of what I was in for, I asked some of my nurse friends for advice, combed the internet for input and took an educated guess about what I might need. I compiled a list of things I thought would be helpful to ease a person with a freshly cracked open noggin through those first few weeks of recovery and am actually very grateful I had most of them.

For those of you soon to be facing your own recovery from a craniotomy, please find below a few of my favorite items from my convalescence:

Prepping For Surgery

  • Blood Builder Brain Surgery RecoveryProtein and Iron. I had about two and half weeks to prepare for my surgery. Two of my friends who are nurses recommended I up my protein intake and begin an iron supplement. Protein is critical in helping your body heal itself and the iron was to help negate the effects of blood loss. I used Blood Builder by MegaFood as an iron supplement and added protein bars and shakes to my already protein bolstered diet.
  • Prepare to Regenerate - After your brain has been assailed, it's a good idea to start doing activities that encourage it to heal. Before you go in, download brain stimulating games to your tablet or phone so they're ready to be played when you feel up to it. Lumosity, Sudoku, Scrabble. Buy some puzzles or word search books - anything you enjoy that gets your gray matter chugging along again.
  • Get a Living Will - Put out of your mind the silly notion that this is morbid. It's smart. I had mine filled out and notarized after carefully considering what options I wanted available to me in the event something unexpected happened. It's a valuable communication tool for loved ones and medical staff and you can ask your hospital to provide you with a free copy to fill out. Check to see if your state requires notarization.
prepare for brain surgery
  • Freezer Meals - My embolizations taught me two things. 1) I should never try and cook after someone has been tinkering with my brain and 2) Your care team is tired too and meal planning can be oddly stressful. I happen to have one of the best friends in the world who flew in from Chicago the weekend after my surgery just to cook for us. Between her and my mother-in-law, our freezer was stocked full of meals. If cooking isn't your forte, at least buy several frozen meals so you don't have to think about food prep in the throes of recovery.
  • Keep the Lights On - If you are in charge of overseeing your household bills and expenses, make sure you have a system in place that ensures they continue to be taken care of while you rest. Believe you me, your electricity bill due date will not be foremost in your mind the first month or three. Have any necessary login information, account numbers and due dates accessible to the person you temporarily pass the reins to. 

  Comfort Items

  • Button Down Pajamas - You aren't going to want to be yanking pajama tops over your head and incision those first few days and weeks. Trust. Buy some PJs that button down and I recommend several comfortable sets as you will pretty much be living in them for the next several weeks. You'll also change them more than you think since some medications make you sweat, sometimes you have poor coordination and spill food/drink, sometimes your cat (whom you've neglected to groom in all the confusion) will shed all over you, etc...
  • Wedge Pillow and L-Pillow - Were I a writer of sonnets, I would compose one just for these two pillows. But since I am no Will Shakespeare, I will just gush about them here for a moment. Sometimes after brain surgery, you may need to sleep at a certain angle to help facilitate healing. I was able to negate building a dreaded, floppy pillow fort every night by instead purchasing this little delight - the InteVision Foam Wedge Pillow. I'm telling you, I was so worried about being able to sleep comfortably after my surgery, but the wedge pillow combined with this "L" shaped pillow by Contour provided a downright blissful combination for me. 
  • Heating Pad - Another heroic item in my opinion. I had my surgery in November, but even if I'd had it in August, I would've still used my heating pad. You will likely be sore from your positioning during surgery and this is a great way to ease those muscle aches. Or perhaps you're like me, and just like the warmth and will spend much of your time tethered to it.

  • Movies/Music/Podcasts/Audio books - You're going to sleep a ton that first stretch home, but in between naps you'll want something to pass the time. Download  your favorites in advance, but otherwise have fun exploring new genres.   
  • Head Bands/Hair Ties - It probably depends on where your incision is, but I liked keeping my hair pulled back and out of the way. I found soft hair ties and wide, cloth head bands the most helpful and painless way of achieving this. If you're like me and hair ties have a lifespan comparable to that of gnat, buy a few packs so you always have one. I can't hold on to those things for more than a day at a time - it's a mystery.
  • Night Light - You know the layout of your home pretty well, I know. But when it's 3am and you have a cocktail of potent drugs and a recovering brain to contend with - you're going to want a night light in your room so you don't accidentally sleep-navigate to your closet instead of your bathroom. Go ahead, ask me how I know. You'll also likely be waking up around the clock to have medicine given to you and it's a lot less disorienting to wake up to someone handing you pills in a soft light than pitch blackness. 
  • Non-Squeeze Water Bottle - Water is essential during recovery but you may be a bit more clumsy than usual so a water bottle rather than a cup is nice. I liked having one I didn't need to squeeze because my wrists were sore for several weeks after surgery from the arterial lines I'd had. 
Hygiene 
  • Hand Sanitizer -You're going to inadvertently touch your incision more than you think. Wash your hands frequently, but hand sanitizer offers a nice alternative in between washings.  
  • Facial Cleansing Wipes - Great for the hospital and at home when you're too tired to stand at the sink and want to expedite your daily routines. I liked them because I didn't even have to get out of bed to wash my face if I didn't want the hassle.
  • Saline - I bought some saline to help keep my wound clean at home as well as help break up the blood and surgical gunk that was plastered to my skull and hair. Unfortunately, I totally forgot I had purchased it which was a bummer because I think it would've been useful. Oops.
  • Pillow Case Liner - Real talk: sometimes your incision can weep a little during the healing process. If you are partial to your pillows, it might behoove you to buy some pillow protectors (not the plastic kind!) to preserve them.I found some cotton ones by Allersoft.
    items to buy for brain surgery
  • Chux Pads - Chux pads are large, thin cotton pads with waterproof lining on the back. They are great to have on hand for the same reason as pillow protectors. You can drape them over the head of your sofa/recliner or anywhere your head might be resting to protect them from your wound. Also handy if you are prone to spilling while eating away from the table. Find at any medical supply store or Amazon.
Medical Equipment
craniotomy recovery tips
  • Blood Pressure Cuff - Your blood pressure is a great way for you or your care givers to tell if you're in distress. You can buy a simple digital monitor that goes around your wrist and you can convey the information to your physician if need be. We like ours made by Omron.
  • Thermometer - It's important to monitor for signs of infection. If you're feeling "off" you'll want to be able to check your temperature. If you already have a thermometer, make sure it's actually working (unlike yours truly who just assumed it was).
  • Pill Organizer - True story, you're going to have a lot of meds to keep straight. One of the ways to keep them all orderly is to buy a pill organizer that suits your fancy. Some have multiple slots for one day, some are just one slot per day you keep refilling for the next dose. Whatever system you think will work for you, I encourage you to try. We did a pill organizer, kept a paper chart and set phone alarms. It was a lot of medicine to keep organized!
Shower Time
  • Shower Chair -  I went back and forth on whether I would need this post-surgery. I am so, so, so glad I purchased one! My first shower was over an hour because that's how long it took the skilled fingers of my long suffering and patient friend to work out the worst of matted blood and whatnot from around my incision. This was at a time when walking from the kitchen to the living room seemed like a marathon. You will likely need someone to help you during your first few bathing sessions and being able to sit is absolutely heavenly. Even after I could manage by myself, I still used the chair to conserve energy.
  • Detachable  Shower Head with Hose - Buying this was the brain-child of my husband. It was very handy for the people who had to work on my hair over the course of several showers to have the option of focusing water in certain spots. It was also helpful to have to use in conjunction with
    the shower chair. Bonus points if you get a unit that allows for adjustable water pressure.  
  • Space Heater -  Totally optional, but it's nice to get the bathroom toasty warm while showering.  The downside to all that water being directed on your head is the rest of you gets a bit cold. Having the bathroom preheated and warm helps negate the chilly factor.
  • Plastic Comb - Keep in the shower as it's useful for working out the tangles, gunk and blood inevitably plastered throughout your hair. Use one you wouldn't mind tossing as it is almost impossible to restore to its original glory after doing battle with post-craniotomy hair.
  • Baby Shampoo - The first several weeks after surgery you are limited to using baby shampoo only. I am not a fan of Johnson's, so I lumbered off to Target and bought Mustela 2 in 1 Hair and Body Wash, Shea Baby shampoo and Seventh Generation Baby Wash. Depending on your hair length, you will probably go through more than one bottle so purchase a couple.
So, there you have it. My personal favorites were my shower chair, pillows, soft button down pajamas and heating pad. Please know you can have a dandy of a recuperation without most of these items. At the end of the day, several of them are just niceties and the things you'll remember and need most during your recovery aren't, well, things at all.

I wish you the very best with your surgery and recovery, my friend!





 *Oh, and in case you have a suspicious mind like I do and are wondering if I received any compensation from any of these companies,- I did not. They have absolutely no idea who I am which is a shame because I feel I have  a real future in shower chair modeling.