Posted in #teamhadley, Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Just Keep Keepin On, MU Health Care, port, portacath, Today I Win, Uncategorized, University ER, University of Missouri Health Care

Started with NO. Now YES with hope.

Hey guys! Before I even start the post I need to say a huge THANK YOU to the so many people that have sent cards, flowers, gifts and all my Hallsville peeps that wore #teamhadley shirts or purple for me. Plus every awesome visitor I’ve had wether I was awake to see you or not 😉 Support like that is what gets you through things like this.THANK YOU.

When I first knew I was going to write this blog I thought it was going to about the following things; The fear of not knowing what to do. The frustration of self-worth from one ER doctor, even with multiple doctor notes and go aheads from many different doctors, of all sorts. The pain, me ranking a level 9 which is hard for me to do as I won’t say level 10 pain. I sat in that emergency room for 9 hours without relief, crying. Which continued to leaving my dad more and more frustrated and incredibly helpless as “he watched his baby girl crying for hours.”

The Neurology resident was trying to work so hard for and with us, looking back at it now, probably also doing way more behind the scenes than we were even aware of. We were all of the emotionally examples mentioned above, plus I reallyy needed the pain of my jaw being locked open to be taken care of. By the time the Neuro resident got me officially admitted to their floor, where they could make all the calls, only the night shift was around, which tends to make things even slower. I didn’t sleep an hour that night, the nurses rounded hourly and my nurse noted that I was awake every single time. The next morning a whole flood of neurologists and their Attending plus my doctor, Dr. Cheesy we’ll call him, everyone wanting to know a different question and have me move this eye or wiggle this finger. Dr. Cheesy felt that the better solution would be to leave me symptomatic and run some tests towards my jaw first. At this point my jaw had been locked open for around 24 hours, without food, drink or anything. They put a NG tube in that morning and I spent my day getting numerous tests, many that I’d not had done before. A NG tube goes through your nose down into your stomach, little did I know for the next seven days that would essentially be the source of all my nutrition

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48 hours. My jaw had now been locked for 48 hours. Dr. Cheesy stops by to let me know he learned what he needed to from all of yesterday’s testing and he and the rounding Neuro Attending had agreed to send me to ICU where I could be closely monitored while given a lot of medication. One of the neurology doctors mentioned that by jaw my be dislocated but didn’t tell us that was for sure or not. I arrived in ICU, shocking everyone at my young age. They started hooking me up to everything. Next time you go to a hospital room check out how many plugs and switches there are, then double it in the ICU. They gave me medication and my jaw still wouldn’t unlock. I’m pretty sure I finally let myself get all upset about it that night buut I also don’t remember all of that day perfectly.

72 hours. I was plain miserable. My whole family was. We’d been living extra on our toes for three days and still nothing had worked. The ENT team let us know that my jaw was dislocated and they would perform the procedure to correct it under conscious sedation. This is where I loose basically all memory for a number of days. I know my whole family was there, I’m not sure if I know my brothers were there through remembering them or being a told a funny story of their time there. I know Kelsey walked in and held my hand, which made me cry because I knew she wasn’t done with school yet.I know I cried a lot. And apparently I asked for the whole family to cram in for a selfie, I’ve still yet to see the picture.

But really this is where things got serious, for the next 10 days, they were messing with my medications so much and my body needed to heal too, I guess, I don’t hardly have a memory of any those days. The testing is previous days paid off giving me a diagnosis of dystonia of the jaw. Dystonia has many different names, depending on the part of your body that it affects. It can be the disease that you suffer from, or, more commonly they said, is a symptom of another disease. Making the questioned spasming and locking of my jaw, diagnosed as a type of dystonia, still a symptom of my HM. This is all so much more than a migraine. Something new to learn about! Because of this tightness and the re-setting of my jaw for the following days my doctors kept me extra-heavily medicated in attempt to calm those areas down for an extended period of time. Those were the scariest days for my parents. I just spent most of my time sleeping and not moving an inch. I don’t know when I left ICU and went down to PCU. I actually don’t remember waking up in the Progressive Care Unit for a first time.One of my parents stayed with me and met with the doctor every day then made it back to work and left me with grandparents for a few hours.  There were scary times, when I didn’t know my birthday or who my dad was or couldn’t walk myself around the halls. My sweet brother came to visit me on prom, which I kind of remember but am so thankful he did for me. I had to learn how I was going to eat things at for while without being to open my mouth much which is how to syringe-thingy came about and my mom had wayy too much fun with it. I hear I had a steady stream of visitors, I wish I was awake and aware enough to talk to or remember everyone. I remember some quicks hi’s when it turns out I slept and they were there for a long time. But Chris, I ate that quesadilla as promised.

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Parker: best picture ever! Hadley: Just finds in camera roll.
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Mom was pretty excited to try feeding me applesauce towards the end stretch!

The point is the pain, fear, frustration and helplessness that we walked in the doors with, instead of just being said no to, it was passed on. New eyes looked at it. Dr. Cheesy and other Neurologists, other doctors, picked their brains. What was created was a wonderful line of communication, new ideas, Hope.

We have Hope on our minds and say peace out PCU nurses, we’ll miss you!

 

 

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4 thoughts on “Started with NO. Now YES with hope.

  1. You brave, strong soul. Cannot imagine what you went through and are going through. My prayers and positive vibes go your way. Your spirit is one of a kind and G-d bless that you have such an amazing support network. My best to your family.

    Liked by 1 person

  2. My dear Hadley!! I ran into your grandma during recital and she told me all about your ordeal. I am so sorry you and your family have to go through this but WOW! You are a woman of grace, beauty and integrity. So inspiring! You are in our prayer box so we will always be praying for you. You can run but you can’t hide from us Gegers:)

    All our love,
    Lisa

    Liked by 1 person

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