family

I Have a Screw Loose…Literally

I met with my neurosurgeon yesterday. It’s been a year since my spinal fusion and I am still having some pain and difficulty. I had a functional capacity assessment (FCE) done and a CT scan to look at my spine.

The FCE came back with “valid” results (apparently this is good? Maybe some people try to fake these? They are hard to read? I have no clue) so everyone was pleased. It basically showed that I can work at a sedentary job for 8 hours a day but no lifting over 30 pounds. There is weakness in my right side. It recommended I don’t walk or stand for too long and don’t waist-lift heavy things. It’s sort of a permanent thing. This is where I am at. Period.

The CT scan showed that I have an actual screw loose in my spine. It has an amount of “micro-movement” that bumps into nerves and throws my pelvis alignment off to compensate. My spine is starting to curve a bit to make up for it. The fusion has not completely fused and could use some more bone material. Another screw may be needed to stabilize my SI joint. The doctor recommended a revision. Normally time to heal, Physical Therapy, and pain management injections help quality of life. I’ve done all of those things. A LOT. So…

We know a bit more about my genetic condition that creates extra scar tissue and my bones ability to fuse. There are special tools, screws and some kind of dip that can be used. This will help to promote bone growth and minimize scarring. I have a lot to think about.

I am going to go back full-time to work next week. I guess I will see how my body responds to the added activity. At 36 I really don’t want to be this way forever. I can function with chronic pain and limitations. But do I have to?

I am leaning towards the revision surgery. Hard. Since Mary just started her new RTC there is a very good chance she will be there for a year. I will need a year to recover just like this past one. I wonder if it will be easier for me if I’m not worried about my physical safety and her mental state at all times. Could my healing process be a bit smoother?

How would this affect our children? Will it trigger Marcus, who just came home? Will it throw off Carl? How much stress and extra work will this cause Luke? And Mary…well, you can read about how is affected her here. It gets so complicated.

When I think of the long run I wonder how much my inability to do things affects them all now. I’m too tired. My back is too sore. I can’t walk for that long. It’s too much to go to lunch with my mom sometimes (booths care painful to sit in.) I need to take a muscle relaxer to sit through Carl’s band concert. We can’t take a long trip. I wouldn’t make it walking in the streets of New York City, the trip I have promised for over a year. I have to lie down on the heating pad…all evening.

The way things are now could be forever. It is unlikely that I will improve much from here. Unless we fix the problem. Luke supports the surgery. I think I want it. I am just not sure. The decisions are huge. Again, I would ask my reader to please wish us luck. And if you’re the praying kind then it can’t hurt to pray as I consider this huge decision. What’s next?

**Names have been changed to protect the privacy of those involved.

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mental illness

Thank Hospital Vacation?

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I must be the weirdest mom ever to think that my major spinal surgery seems like a vacation. Trust me, a little fusion surgery was nothing compared to the chaos Mary was experiencing at home.  I had some complications, and needed a cat scan. They found one of my vertebrae was actually fractured. I sobbed in pain while they gave me every narcotic pain killer intravenously they could. Finally strong muscle relaxants were administered and I calmed down. I clutch Luke the entire time while he whispered soothing things into my hair and stroked my arm. Vacation, right?

I had trouble breathing so I went to the ICU for a day. I had an oxygen tank sort of plugged into my nose in order to help me continue breathing. Vacation, right?

I am in constant, excruciating pain. However, my meals are brought to me, and my daughter Mary isn’t attacking me here. There is significantly less screaming here than Mary is doing at home. I feel deep pain at the incision sight where the doctors cut so deeply into my spine. It doesn’t matter.  I’m safe and safe feels good. Yes, even with the deep and unrelenting pain, this might be a vacation.

Everyone smiles at me and offers to bring me things at the hospital. They help me use my walker (really hard for me to walk right now.) I get to order my meals from a menu. No one yells at me. No one is throwing things. And I haven’t seen one tantrum since I’ve been here. Not even from the patients! This MUST be some form of vacation.

The truth is I’m doing very poorly. The Physical Therapist came to see me and opened with,”I’m not trying to be mean” before helping me to a chair. That is where she wanted me to try and sit for an hour. I couldn’t do it.

The pain was so unbearable that I clutched the chair arm and  sobbed for a half an hour straight. I had an ice pack. I tried the PTSD calming strategies we use with Mary. I grounded myself by what I could see and hear. I sipped water and counted my breaths, trying to breathe in and out slowly. I tapped my fingers in a method I learned at a trauma workshop. I tried to picture the happy place I keep in my mind. I counted to 100 and back. I asked for a stress ball, in between giant, hiccuping sobs. There was mucus everywhere. Tears soaked my hospital gown I just couldn’t stop sobbing. .

“Stop crying,” they kept telling me, “You’ll hyperventilate.” 

“I’m trying!” I gasped, “I’m using my coping skills!”

Did it work? No. They ended up peeling me out of the chair after 30 hysterical minutes. I even had them close the sliding doors so I couldn’t disturb the other her ICU patients. I wanted to be so strong and finish the full hour sitting in a chair. I wanted to stop my sobbing hyperventilation and soldier through. I wanted to be in charge of my own body! But I was basically locked into an adult form of out-of-control behavior. I didn’t yell or throw things. I was very polite when I could get a word out. “Please,” I’d say, “I’m trying!”

I just couldn’t do it. They put me back in bed and administered strong pain medication and  more ice packs. My doctor was baffled. She didn’t know why it hurt so much but she was very concerned that I was adamant to keep going.

My doctor and the PT were concerned with my pain. I wasn’t. Here’s why: my pain is physical. When Mary sobs uncontrollably, tantrums, or panics, her pain is emotional. We can’t administer more pain medication and send her back to bed.

Her trauma is as real as my surgery. Her emotional pain is as real as my physical pain. I’ve made it home now and all I can do is be grateful. That was the absolute worst vacation ever.

**Names have been changed to protect the privacy of those involved.

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family

Contingency Plan: In Case I Don’t Make It

The back brace Mary decorated for me

Anyone who reads my blog knows that our daughter, Mary, has been inpatient at the psychiatric hospital for almost 2 weeks now. It’s her second stint since right before Christmas. It’s been terribly hard on all of us. Children with attachment issues need to be close to their caregivers. Mothers of any kind need to be near their children.

In this case, safety is paramount in all of our decisions. I have a serious spinal injury, . Therefore I cannot physically assist in any way, if Mary has a dangerous dissociative episode. She hasn’t had one in almost 2 years until now. Just our luck that it happens when I’m at my most vulnerable, physically.

They’ve been titrating a new medication for her. We aren’t sure yet if it’s at a therapeutic level. Her emotions are still all over the place. She fluctuates from one minute to the next. She is angry, then giggly, then despondent within 10 minutes. She’s had several physical outbursts on the unit. She’s been defiant towards staff, throwing things at them. During one incident, she pounded on the window of her door, trying to break it. Too bad we don’t have unbreakable plexiglass on our windows at home.

No, she isn’t “there” yet. She isn’t at that place that keeps her safe enough to access all of the therapies and interventions we have in place for her. No amount of TBRI parenting, PHP treatment, TF-CBT therapy, coping skills, or sensory diet can help her until her brain is in a place to process it. The medication helps her brain to get there.

I need a contingency plan. I admit, I plan for all scenarios as much as possible. It helps me to feel productive and in control. Frankly, there are some things entirely beyond my control. But I’ll probably never accept that. At least, not in this lifetime (I swear, I’ve tried!)

My spinal fusion surgery takes place this Tuesday. We are taking our girl home from the hospital on Monday. We will have a meeting to hear the results of the full psychological evaluation they gave her. Maybe we will gain some insight. Maybe not. Either way, she comes home with us.

We have to take her home because I need all of my chickens together on Monday night. We’ve planned a “Pajama Party” where we all pile onto the king-sized bed in our matching Jammies (lame, I know!) and have popcorn.

The next day is my surgery. This is a big long, serious operation. I can face anything if I’ve had my family with me. I’m one tough Mama so I feel like it will turn out just fine. But if it doesn’t? I’ve had that one last family night.

When I was little, my mom used to read to me all the time. Even a series of books called “Sweet Valley ¬†High,” which she hated yet read anyway. My mom has probably made me macaroni and cheese thousands of times. She’s tucked me in, kissed my boo-boos, and generally made things better for me my whole life. She’s taught (or tried) to teach me good lady-like manners my whole life.

I’m not the best student but she loves me anyway (remember my zombie centerpiece at Christmas dinner, mom?) She has perfect hair, perfect make-up, and a perfectly dirty joke when you least expect it. My mom could give Emily Post, Lauren Bacall, and Elizabeth Taylor a run for their money. In the same breathe she can out-do Chris Rock for shockingly funny dry wit. And she’s mine. I’ve gotten to have her for my entire 35 years on this earth. Lucky me.

Mary hasn’t had me since infancy, so I’m making up for lost time. By my calculation, I still have dozens of horrible books from a predictably plotted children’s series to read to her. I have thousands more mac and cheese meals to go. And let’s face it, I’ll probably never have the center-piece thing down. But still. Mary is owed the full mommy experience. The kind I got to have. The kind that always makes it better.

My kids need me. They can’t afford to lose another mom. But if the worst should happen, I cannot, I WILL NOT allow Mary to think that it was all somehow her fault.

It like an oncoming storm. Maybe it will hit and maybe it won’t. Maybe my surgery will be a shining success, maybe it won’t. Maybe Mary has to go back inpatient this week, maybe not.

Either way, we are going to batten down the hatches, and ride it out. Together. As a family. Because that is the most important thing I have ever had in this lifetime. My family.

**Names have been changed to protect the privacy of those involved. 

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