Scolimom

They tried to make me go to rehab and I said no…no…no.

posted on : July 28, 2016posted by : April7 Comments

I’m Baaaaaack. I don’t even know where to start. This whole experience has been an emotional roller coaster. Some parts I don’t remember at all and some I wish I could forget completely. It’s been more than 3 weeks since I have been home in my own bed, watching my own TV, taking a shower in my own bathroom, going to the bathroom without 4-5 people watching me, etc. I can’t even talk about how long it was before I saw my kids without breaking down in tears.

I would like to thank my husband, Neil, for keeping all of my readers updated. There was a long period of time where I was completely out of it due to intense pain and heavy drugs that made me hallucinate. I also think writing about it helped him cope with what was happening as well. Thank you again for all of your supportive comments and messages. I was unable to read them until recently, but I know it helped Neil while he watched me lay there.

My stay at Stanford started off rough. Thank God I had Neil as my advocate because things may have gone worse and taken longer without him. He may have ruffled a few feathers, but he made sure I was being taken care of and that the correct tests were being done. When I woke up out of my initial spine surgeries, still intubated, I immediately panicked. I couldn’t feel or move my left leg. I started to hyperventilate and doing so made me begin to vomit with the tubes still in. I slammed my hands down repeatedly on the  sides of the bed to get the attention of the nurses in the ICU. Not understanding what I was trying to mouth, they had me write it on pieces of paper. I was terrified. I spent 2 days in the ICU before being brought down to my room in Ground D.  From there, I went through a 3 hour MRI that should have only been an hour long, an emergency bowel resection, drugs that made me hallucinate very morbid and scary things around the clock making me go crazy and numerous other obstacles that  I originally shouldn’t have gone through. I was so dehydrated and under nourished at one point, that my veins would collapse during blood draws and it would take the nurses 6-7 tries per time to get a sample of blood. These sticks happened 3 times a day since I was on lidocaine IV meds. My hands and arms were swollen and severely bruised up from this and still are. Since Neil kept the blog up to date, I won’t go back through the last 3 weeks too much.

I arrived at the rehab facility by a transport van on a gurney. Boy, was that an uncomfortable two hours in traffic.  Upon arrival to my room, I began to cry uncontrollably. Neil was only able to spend the first night with me and for the last 5 days, I have been on my own here except for the few times Neil has been able to bring the kids to see me very briefly. I was definitely cheered up when Will came and spent 3-4 hours with me because he refused to leave my side.

I have 3 hours of physical therapy and occupational therapy per day. After 10 minutes, I feel so fatigued that it would look as though I had just run a marathon. It’s frustrating and depressing that 3 weeks ago, I was dancing and walking as usual and that a slight slip of a tool during surgery, injuring my spinal cord, could change that completely. My left leg doesn’t do what I want it to do. There is a disconnect between the brain and my muscles making it sometimes impossible to even move that leg. I also am numb and feel pins and needles down the entire leg as well. Although it has gotten a bit better over the last 3 weeks, this weighs on my mind every second of every day especially during physical therapy. I wish it were just a bad dream I could wake up from.

I have handled everything that has been thrown at me the last 3 weeks. Now instead of just recovering from the 2 part spine surgeries, I have to recover from the bowel resection as well. I know how strong I am and I can take all of this on with no problem because I have to.  However, not knowing if or when my leg will ever work again tears me apart. It’s hard to stay positive knowing that it may never be possible to dance again. Now it’s not just my back prohibiting me to dance like I used to but also my leg. How long am I going to have to rely on a damn walker to even walk? Will it be possible over time to use a cane?  How much time does it take for my spinal cord to heal if at all?  How am I going to take care of my 4 kids when I can’t even take care of myself? All of these questions race through my head multiple times a day. Going into this, it was my back I was scared would keep me from having a normal life and now I have to pile my stupid leg issues on top of that. Eff me, man. Why couldn’t it have gone smoothly? People tell me I have to stay positive and it will get better. I understand where they are coming from but it’s easier said than done.

Today I am busting out of rehab. I could probably stay a couple more weeks. However, laying in bed here is no different than laying in bed at home. At home, I will be around my kids, in my own room, and eating better food. Physical therapy will come to my house to work with me there. And to be honest, time is the only thing that will decide whether my leg will go back to normal. I feel like my recovery will go much better at home where I am happy. I am also really excited to go home and take a real shower in my new shower chair and have Neil shave my disgustingly hairy legs. I am actually a little nervous for him to do that. At least I don’t need him to wipe my ass. Thank goodness for my abnormally long arms. I can get the job done all by myself!

I want to thank my friend Kitty for starting a GoFundMe account while we were at Stanford. We are not the type of people to ask or accept help. Thank you to all of those who have donated whether it be money, meals in our freezer, child care or the cards and flowers that surrounded me in my hospital room. We are so appreciative for all of it.

My  journey is far from over. I have a long way to go.  Thank you for supporting me and following my story.

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About The Author

April

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7 COMMENTS

  1. Julie Bower | 28th Jul 16

    Oh you’ll be so much more comfortable at home! Your whole life and career had been focused on having a firm command of your body for ballet–learning to command your new body is your new task. The way I see it is that first you need to regain your physical strength from laying in the hospital and not eating. Then you’ll move on to building new muscle tone that you didn’t have to use as much before, both to move with your new back and to accommodate the abilities of your left leg. I have no doubt you’ll walk and dance again. It’ll be different, sure, but it’ll happen if you work hard enough (which I’m sure you will!).

    P.S. Welcome back! We’ve missed you!

  2. Kitty Adams| 28th Jul 16

    Yes! I love that you busted out of rehab, I know home will be so much more conducive for healing. You’ll get to see your babies all day. So happy for you April, the road ahead may be long but you will be stronger for it! Xoxo

  3. Smist | 28th Jul 16

    I have been checking in everday. So glad to see this post. So happy your gonna go home!!!! Did you just demand you want to go home?? There’s no doubt in my mind you’ll feel better and recooperate better at home. Do you still have your sister there?X ray is straight.

  4. Kim | 28th Jul 16

    April, I am so happy to hear that you are finally home surrounded by Neil and the kids. That is the best medicine possible. I continue to pray that things improve and soon you will have full use of that leg again. You are a strong person and if anyone can conquer this it’s you!!!

  5. Noelle | 28th Jul 16

    So glad you’re coming home! Let me know if there’s anything I can do to help!

  6. Carlota | 2nd Aug 16

    Hi! Reading from Madrid, Spain, also scoliosis but haven’t gone into surgery yet. I can see You are so so strong and with Neil’s help, Im 100% sure you’ll get through this in the blink of an eye! Really, I cant tell you how inspiring your blog is. Your kids are lucky to have such a strong and beautiful mummy!!

  7. sue m | 2nd Aug 16

    Been checking in also. You must be busy. Hope too see n update

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