The Unknown (Scoliosis)

posted on : July 14, 2016 posted by : April 17 Comments

April is sleeping and my mind is racing. Now that April is well, as in she is alive and is in no current danger, what is next. Next, obviously is healing. The easy part will be her healing from her incisions, the disecting through muscle, the rods and screws being placed in her back, the osteotomies that literally ripped her vertebrae apart to make her spinal column flexible enough to straighten, and all the other normal things associated with Scoliosis surgery and colectomy surgery. The hard part will be learning how to walk again, coping with the mental toll of not being able to use her left leg, not seeing her children, and in general just not knowing what is going to happen in the future. April last saw our two youngest children, Will and Nick, on the 4th of July. We aren’t even sure when she will be discharged from here, and when she is finally discharged April won’t be able to go home, she has to go to a live in rehab facility. So who knows when she will actually be home.

Scoliosis

Everyone, including myself, says “oh everything will be fine, it is tough but you will get through it” and all the other cliches that we all use trying to make someone feel better. The truth of the matter is, right now April does not have the ability to walk on her own. Her left leg is literally just a leg to stand on and even standing she can’t feel her leg. She is not technically paralyzed in the medical sense of the word because she is able to move her leg and foot, but she doesn’t know how or where she is moving it or what she is doing with her leg and foot. She has sensory damage. She can move but has no feeling, even to the touch. When April stands she has no sensation of her left leg, she can not feel her foot touching the ground, she can not feel if her knee is bent or straight and when she tries to take a step her leg is flung around or she moves it in a very shaky unsturdy way and guided by a physical therapist.

Now it is early. It’s only been a little over a week, but her leg has been pretty much the same since she woke up. How did this happen? Well, I was told during the decompression portion of the surgery somehow they damaged April’s spinal cord. All the doctors say they are optimistic, but what are they going to tell you while you lay in a hospital bed in agonizing pain, “there’s no hope.” The no hope part probably comes out of their mouths later when their patients themselves have come to terms with what’s going on. I’m not trying to say there is no hope, I think there’s plenty of hope and I am confident she will walk again, but at what degree or in how long I don’t know. Unfortunately, this has happened to April, but it has also happened to her family. Unfortunately, we have no idea how she is going to be in a month, two months, or a year from now, but I do know this recovering process will be slow and torturous for all of us, and especially April.

What do we do for now? Now (and forever), I just keep positive and strong for my wife and kids and try to get through the nightmare. Constantly in my head are all the possibilities that use to seem crazy, but now are much more of a possibility. How do I go back to work? How can April be home with the children in the future? How do I restructure our entire life in order to make all of this work? Do I some how find a permanent nanny/nurse?

I feel like this is an extremely negative post and I don’t want anyone to think I am only thinking of the negative things or giving up and that I have no hope. It’s just that we all try to think of the positive and that everything will be fine and work out, but I have to think about some of the reality and how to reorganize our lives to get through it all. I have tons and tons of hope and faith that April will be fine because I know she is strong and an extremely determined person, but it may take a long time, at least it will take a lot longer than if the surgery went as expected.

To put it simply I am terrified. Terrified that my wife is now disabled and not knowing for how long, terrified of how my four children will cope or understand, terrified how I am going to cope and not knowing what/how/when to do things – like do we need some sort of government aid for people with disabilities, live in help, childcare, how do I go back to work, her work, does my work have any help or programs they can offer, do I need to make a bedroom downstairs and will she need a special walker or special commode – all of these things plus a million more that will come up later, and I’m mostly terrified for April and how she is going to do. If I feel like this I can’t even wrap my head around how she is feeling.

scoliosis

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April

17 COMMENTS

Carol Edson| 14th Jul 16
Neil- Hugs. I know I already said this but….if they have a social worker/discharge planner- at some point he or she is going to be able to help make those plans and have a sense of how to figure out and provide the needed support. You are thinking all the right directions…and from here I don’t know how long they are thinking before transfer to the live in rehabilitation hospital setting. I am hoping that in addition to here, you have close friends or family who are supporting and listening to you. Part of what is hard is the energy is there to DO something but the data of What that should be is still pretty incomplete. I am very hopeful that the spinal cord is annoyed but will recover sensory function but that process can be months. Please take good care of yourself…the basics really matter ie eat good food, get outside, breathe, drink lots of water, listen to soothing music…and try to get enough sleep. Keeping you healthy needs to be a high priority too.
Noelle | 14th Jul 16
Thinking of you all and hoping for the best! Please let me know if there’s anything I can do to help out while you’re recovering.
- ajwagner26| 14th Jul 16
  Hi Noelle,
  Thank you so much for the lovely flowers. They instantly made April smile and she loves them.
  - Noelle | 15th Jul 16
    I’m so glad they brightened her day for a moment. Please let me know iif there’s anything I can do out here to help. Sending positive thoughts your way.
Casey Owen | 14th Jul 16
Both of my parents were brain injury survivors. They both did physical therapy and rehab. I can totally relate to everything you are writing and it sucks that other people feel this way. The rehab facilties typically will not release without some sort of family plan. The hospital should have a social worker that you can talk to and express all of your concerns and maybe they can help you start preparing or at least ease your mind. I would suggest contacting your work as well and making them aware of your circumstances. Your HR department should be able to get you in the right direction. Many employers offer services that can assist you in the next steps and what ifs. Be prepared for mounds of paper work and phone calls. Keep reaching out. Ask questions. Continued thoughts for strength for April and your family.
Julie Bower | 14th Jul 16
Oh Neil. You are such a supportive husband and father to be so forward thinking and practical! I have faith that all of these things will fall into place…eventually. Please, please make sure you ask for help from the hospital staff, friends, family, us distant folks who are in the blog-o-sphere and on Facebook. Really. Even if you don’t know what kind of help you need, we’re all here to help where we can. Crowdsourcing is a great way to brainstorm! (I can help you figure out how to use Facebook if you need!) I am happy to do some research for you about getting April on disability through SSA and see what other federal/state assistance programs are available–just say the word.
And I echo what Carol said before me: please take care of yourself, too. April needs you to stay healthy, both physically and mentally. Fresh air and a brisk walk will do wonders for you when you’re feeling restless or depressed.
I’m sending you and April each a big hug!!!
Brenda Dubatowka | 14th Jul 16
Neil-I can say I’ve been where you are. Not exactly the same but my heart is breaking reading your words as I too went through something similar. And there is hope. I echo or say ditto to the great advice you have received from other posts/comments. Please take care of yourself so you can take care of your family. You are an amazing husband and father. You can do this. And April is one of the most determined persons I have ever known. She’s a fighter and such a good mama. If you need anything or just need a chat, you can get a hold of me through Mitch or your mom. We are keeping all of you in our thoughts and prayers. One piece of advice I received was to not get too ahead of yourself. One day at a time. Sometimes, one hour at a time.
-Brenda
sowhatstheplanblog| 14th Jul 16
I can only try to imagine how you are feeling right now. It must require an Olympian level of emotional strength to think straight. I’m here in England so only have a fractional understanding of how systems work for you over there.
I recall not knowing where my right foot was at the early days post op. But it did recover.
As has been said, if you have any sort of discharge planners and Social Workers, share your thoughts. I do hope your employers are supportive.
It’s still early days for April, and for yourself. It’s been traumatic and no doubt reminds us how fragile we are.
Love to you all.
Laura | 14th Jul 16
Thinking of you and praying for miracles, comfort and quick healing!
mapoudret| 14th Jul 16
Dear Neil and April,
I will pray about your concerns regarding your futur and the futur of your family. I don’t have any guideline nor any experience of what it may look like. I have a scoliosis too and I am aware I might not be able to walk as I grow older. Therefore when my husband and I asked for our house to be built in Dublin, we included features that will allow me to enjoy the main parts of the house and all the garden in a wheel chair. But this is fiction , I must go back to your reality. Please Neil, don’t be scared! Fear robs you of all the good you have in your life. Please focus on the goods, rejoice and be thankful for them. For the concerns, take them, face them and deal with them one day at a time. I am praying for my Daddy , the divine life planner, to send your way day after day the tools and wisdom you need to manage each challenges. As the man of the house, Neil, you are the provider. Rely on the greatest provider to be able to uphold each day without being dragged in the dirt because of fear . You are not alone. He is good. He is reaching out to you to help you. Trust HIM.
With love for April and you.
XXXX Marie-Anne
Monique | 14th Jul 16
Doctors have no problems dilivering bad news, as a psychologist working in a hospital, I see it happen all the time. Doctors deliver bad news and it’s my job to come smooth it over. So if the doctors say they are optimistic don’t discount that, there is hope and April is determined. Try to stay present focused, here and now, “what can I do for April, my kids, myself today”. Have faith that you and April will make good decisions for your family when the time presents. Lastly, make sure to participate in something that makes you smile everyday, like, bring April’s favorite funny movie and watch it together (as best as one can in a hospital). My thoughts and prayers go to your family. Take care.
s. mist | 14th Jul 16
HI Neil . Im sorry you guys have this pitfall right now. Neil, you are definitely going to need help and you have to ask for it. Im sure right now April can get some kind of short term disability, maybe that money can help with childcare or a nanny. I never thought shed have to go into rehab but I guess that is because of the spinal cord /sensory injury.Do you have her sister still there, What about inlaws? I hope this situation will get better and that she will soon be able to have healing and feel her leg. When a friend of mine here was sick (not scoliosis) , the neighborhood came together and someone cooked a meal every night and bought it over to the family. Any idea when April will go into rehab and is it in /near the hospital you are at? Hugs and prayers and please do take care of yourself . You need to eat, sleep, your family needs you and you are only good to them if you take care of yourself and not fall apart. You may even need to speak to a therapist and there is nothing wrong with that.
s. mist | 14th Jul 16
By the way is that a custom brace? Did the doctor tell her she was going to be in a brace?
- ajwagner26| 14th Jul 16
  Yes she was fitted for a custom brace while in the hospital and we were told before the surgery that she would be getting it.
s. mist | 14th Jul 16
Also when you get a chance post a pic of the new back xray. Let April know we are rooting for her. Let us know if there is an address to send cards. I know you don’t know most of us so you may not want to give us an address, but maybe a post office box?
- ajwagner26| 14th Jul 16
  I have seen the X-ray but do not have a copy of it yet. All I can say is that the correction is good and went from over 80 degrees to about 30. About an address I will have to get back to everyone on that.
MaryAnn Young | 16th Jul 16
Neil,
You have such stronge support from your family,friends and co-workers through this and prayers you will all overcome this. God Speed my friend!