Tag: PICC

This is what support looks like

CraniotomyMeg

Within a 6 month period (June – December, 2018), I had 37 office visits, over 30 recorded focal seizures, 15 MRI’s, 7 CT scans, 4 hospitalizations, 2 craniotomies, 1 infection, and 1 incurable diagnosis, Neurofibromatosis, type 2 (NF2).  I had 17 Meningiomas (brain tumors),  6 ependymomas (spinal cord tumors), and 1 Acoustic Schwannoma (brain tumor in my ear). And a partridge in a pear tree.

I learned so many things during that period of time. One of them is support comes in many forms. I also learned that it changes over time. No matter what form it takes though, a support system is meant to hold you up when things feel like they are crashing down.

Overwhelming Support

Initially, our extended network of friends and family were as shocked as we were by my diagnosis. We were flooded with cards, flowers, well wishes, handmade children’s art, visitors, and more thoughtful gifts than I could count.

Support

During this time, my husband, Josh, and I leaned on everyone. We were all hurting, together. I say “we” because it is not just the person in the hospital bed who needs support. I was fully aware that my diagnosis affected everyone I loved. At that time, they needed my support as much I needed theirs.

Private Support

After a few months, the ‘hype’ of my sudden diagnosis and back-to-back surgeries began to wear off; our meal train ended, and our wide circle of friends and family weren’t checking on us quite as often. During this time, Josh and I learned to lean heavily on each other for support. 

He needed me to be okay just as much as I needed him to push through all the medicine my body required to beat the infection. The infusion process took about 30 minutes, and it quickly became our daily reminder that we were fighting this battle together. 

Picc Infusions

In addition to taking care of me, and my PICC line, Josh also took on all of the parental responsibilities and housework we had previously shared. He bathed our crazy babies, made them dinner, picked them up from school, and put them to bed. He did all of our laundry, grocery shopping, fed the dog, and took me to appointments. It was like he was a single dad who had 3 kids (me being one of them). 

When Josh had to go back to work, things changed again. I was still vulnerable and unable to take on my share of our daily responsibilities, and he could no longer do it all.

Balanced Support

That was when we realized we couldn’t do this by ourselves; we needed help.

During this time, Josh and I learned to lean on those who love us most.

Grandparents to the rescue! My mom-in-law stepped in immediately to help with our boys, take me to appointments, and make meals. She was available at the crack of dawn, and as long as I needed her until Josh got home from work at night. She offered irreplaceable love, and both physical and emotional support.

Nannie

My dad and step-mom also recognized our unspoken need for help, and flew in from Kentucky to offer reinforcement, at just the right time! They stayed with us for nearly 2 weeks, and did everything that I couldn’t at that time, allowing our boys to maintain normalcy in their own home. 

I remember waking up late one morning. I grabbed for the baby monitor and realized it had been silenced. I listened, and heard the most amazing sound in my house: normalcy! My dad and step-mom were playing with our children, and feeding them breakfast. Coffee was brewing; the smell reminded me of when I was a child. Those moments were the most healing. We were not alone.  

I’ve always said that having an amazing support system was critical to my recovery. Now, you know why.

We got through it. Together.

This is my story, and it is not over yet.

I want to take a moment to extend a heartfelt THANK YOU to every person who had said a prayer, sent flowers, made gifts, visited, brought meals, or wished us well throughout this process. We are so blessed to have the support system we do, and forever grateful.

Craniotomy Me… Again

CraniotomyMeg

When I woke up from my first craniotomy, I felt so alive! I had a waiting room full of people who loved me, and a full understanding of everything that was happening.

When I woke up from my second surgery, it was completely different.

In the recovery room, I remember opening my eyes just one time. I saw the face of a nurse for a fraction of a second, and then the pain became intolerable. So I quickly shut my eyes again, and willed sleep to come. Thankfully, it did.

When consciousness came back to me, I was already in the ICU; I recognized the paint on the wall from my previous craniotomy. Oh no, I thought, something must have gone wrong. I’d gone in that morning for surgery expecting a quick, 15 minute procedure to clean up a possible skin infection. It was supposed to be an outpatient procedure, meaning I would go home that same day.

I reached up, and felt the horribly familiar bandages wrapped around my head. I also had several wrist bands layered on my arm.

“What happened?” I asked my husband, Josh. “You’re okay,” he said. But, I could tell from the crease between his eyebrows and that backwards hat that he was worried.

waking up

Over time, throughout waking moments, Josh patiently explained that my neurosurgeon had found a bacterial infection, and it was much deeper than anyone could have guessed. A full craniotomy had been performed. It had taken about 3 and a half hours (nearly as long as my first surgery to remove two meningiomas).

How had this happened? Did I do something wrong?  I remembered how carefully I’d washed my hair after my first craniotomy; with the hospital shampoo exactly as directed. I had adhered to the weight restriction, and took every pill as prescribed. I even changed my pillowcase every day for a month. Yet, somehow, an ugly little germ had beaten my efforts, crept under my skin, and left my body in jeopardy.

If you’ve ever had surgery, you know that “INFECTION” is a bad word. If you’ve ever had brain surgery, you know it’s the mother of all bad words. If the infection reaches your brain, there is very little chance of survival. Thank God, we had caught mine just before it reached that point.

If we had waited any longer to explore the area, I might not be alive today. And, I remembered that many times over those next few days when I was inclined to think “why me,” or “this sucks,” and “it hurts.” Every time I threw up jello; every time a new bag of antibiotics was hung; every time I grit my teeth from pain; every time I tried to stand on legs that I couldn’t feel, I was still so grateful to be alive.

After 3 long days, the bandages came off. My medical team agreed that the incision looked “good” and Josh took a photo to show me where a section of my scalp had been removed to keep the infection from coming back. 

I’m including the photo below, so if you’re squeamish, I suggest scrolling quickly past it.

my head

The test results had come back, and the bacterial infection was confirmed. I required a heavy dose of antibiotics that would need to be given intravenously, which meant that I had two options. I could stay in the hospital for six weeks, or I could get a PICC line.

The thought of having a central line inserted into my arm that dropped medicine directly into my heart was terrifying. But, the thought staying in the hospital for six more weeks was worse. We hadn’t seen our kids since the morning before surgery, and we were ready to get home to them.

A specialized team came into my hospital room, turned it into a sterile surgical environment, and inserted the small purple line that would allow me to go home!

Having had 2 craniotomies in 3 months, we’d become friends with many of the nurses on the floor. They had helped me at my weakest moments, when I couldn’t even put those ugly yellow hospital socks on my own feet, or walk 3 steps to the bathroom. And, they were happy to celebrate with us as we got ready to be released. By “we,” I mean, I stood for one photo while Josh did everything else; packed our bags, took everything to the car, and discussed next steps with my medical team.

home again

When we walked in the door to our house, we discovered that our kitchen had been transformed! A birthday banner was hung, balloons tied to the chair. Beautiful yellow sunflowers, a pumpkin cake (my favorite), and even gifts decorated the counter.

Have I told you yet how awesome my mom-in-law is?

I had spent my 32nd birthday in a hospital bed, recovering from a brain surgery I didn’t expect to have. While that isn’t how I prefer to spend my birthdays, I know that medical intervention is what allows me to continue to have birthdays.

I used to dread turning another year older, but now, I’ll never take for granted being able to blow out the candles again.

This is my story, and I’m just amazed that it is not over yet.