Posted in #teamhadley, Beating Hemiplegic Migraine, Botox, Chronic Migraine, Daily Migraine, Dystonia, Health Blog, Hemiplegic Migraine, Lidocaine Infusion, Lidocaine Infusion for Migraine, MU Health Care, PCU, port, portacath, Seizures, Today I Win, Uncategorized, University ER, University of Missouri Health Care

FOUR WEEKS

On Friday, May 6th, I got released from a 13 day hospital stay and headed home. Home was where I needed to be. Graham was stoked to have me back, he talked non stop to me as soon as we picked him up from the Bequette’s house and made sure to carry everything inside so I didn’t have to. I was still so heavily medicated my mom just wanted to get some food in me before I went to bed, sweet G talked to me the whole time we ate, even though every minute or so he’d have to ask if I was okay because my head would bob forward into my bowl. Trying to act like I’m okay and it being physically impossible for me to fake it just for him, at a time like that, is solely one of the hardest parts in dealing with this nasty disease. BUT I WAS HOME.

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For the weekend my brothers and pup were all actually so glad I was easily found in my room, they all kept just coming in because they liked that I was in there, and I liked that too. I got to spend the day at my grandparents’ house, like a typical weekend, and get knee deep in the pond with Jax. Kelsey and I resumed our typical Grey’s Anatomy watch party positions on my couch and I got to sleep in MY OWN BED! I was in high Heaven. I’m always complaining about being home too much, then I don’t get to come home for a few days, now I don’t want to leave it! Back to normal felt so good.

On Monday afternoon, the 10th, I went to my check in appointment with my Neurologist where we were supposed to make a game plan. I was pretty aware that we’d be scheduling lidocaine infusions but I wasn’t sure what the details attached would be, such as a scheduling date. Lidocaine Infusions for migraine is a fairly new treatment idea catching on in the world of migraine. These treatments are something I had been researching since August of 2015. I had asked a couple of other doctors about them, one saying he didn’t know and one saying I should give it a shot but that no one around here did anything like it. I had an appointment to travel to a specialized clinic in Texas this winter, but the doctor fell very ill days before I was supposed to see him and he is no longer practicing. I was in communications with a doctor in Washington D.C. that I was referred to that did Lidocaine Infusions for migraine, until I first met with Dr. Cheesy who suggested trying those before I even got the chance to ask about them.

Dr. Cheesy told me I would be hospitalized for 5-7 days in the ICU, the ICU being just a precaution as it is still a relatively new idea and Lidocaine is a serious drug that can seriously affect your heart. After discussing the idea a bit more at my appointment that Monday, Dr. Cheesy asked me when I would like to try them. I sarcastically said, “I’d start tomorrow” and literally laughed. He said, “Okay, can you be here by 11 am? I was going to have you come in tonight but I figure you want to go home and get your stuff together.” I seriously had to ask him if he was joking, most doctors take months to schedule the smallest of things.

He was serious. Tuesday, May 11th, I checked back into the hospital. At first, I wasn’t too bothered that I was having to come back in. I was glad that my new doctor was continuing to prove to be a “do-er”  and try new things. I was glad to be trying something that I had put so much research and back hours into, and interested in trying something new that had the potential to completely cut back all things hospital to a reasonable amount. I knew I needed to try it. Dr. Cheesy told me he didn’t expect to see drastic results with me until around day 5, because I’m complicated.

What I didn’t think about, however, was that I had just been sent home with several extra things to help control the pain and movement issue of the jaw on top of having my regular HM rescue medications that I try. Because the Lidocaine was a new treatment for me, I could only take my daily medications that couldn’t be skipped. Rescue medications I know work to help abort an attack, like Benadryl, were avoided in order to be able to differentiate the difference between the lidocaine making a difference or not. Unfortunately, because of this, the timing just so happened that an attack hit right on day two of me trying the new infusions. Since rescues weren’t an option, by Friday I was in full attack mode and the jaw locked open.

Without a doubt that was the most painful time my jaw has ever been locked open. It had just so recently been reset that my jaw wasn’t even supposed to be opened that far. As soon as it happened I started bawling and then looked at my grandma and said, “I’m not supposed to open my mouth all the way for three months. It’s not supposed to do this!” As soon as it happened, Kelsey, my best friend, jumped up to call the nurse, then sat in my bed with me for hours. After getting X-rays we knew my jaw was dislocated again, but it was Friday night by the time we knew it would have to be reset so I had to wait, again, until the next day. I had to be taken off of the Lidocaine before I could have the sedation medication used in order to comfortably have my jaw reset, anyways, so that night Friday we stopped the Lidocaine starting the wait. My doctor ordered that I have a NG feeding tube placed again, for the first time in the trip I was trying to keep the tears in and I was having a tough time staying positive. Just days before I had gotten my previous NG tube out and had said I wasn’t ever going to get another one again, but here I was less than a week later, hoping that the metal weight was correctly placed in my stomach. While my Dad left the room for bit I had a heart to heart with my nurse who let me cry it out, then  got me back to my conquering attitude and placed the tube.

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The next few days went okay, I wish they would’ve been better. I got to resume the lidocaine after 48 hours of being removed from it but I wasn’t allowed to have my drip increased for several days, originally the plan was to have it increased daily, putting me at a high dose by the end. Lidocaine can seriously affect your heart so every six hours I had to get an EKG, thankfully those continued to come back within normal range. Because I was stuck at a lower dose than expected and my heart was handling the medication well, I did not have to stay in the ICU like planned. I spent the whole ten day trip on the PCU unit, which is where I spent a majority of the week before so I was thankful for familiar faces. 

On Monday, while still receiving Lidocaine, I was scheduled for to get Botox in my jaw. However, this required that my jaw be fully opened again, which of course dislocated it immediately seeing as it had only been two days since the ENT team had reset it Saturday. All of my doctors were expecting it to lock open but felt that the Botox was worth the shot, so the ENTs were waiting for me upstairs, after hours, to reset my jaw by the time I made it back to my room. Thankfully, this time I got to continue on the Lidocaine drip even with the Versed and Fentanyl, because my neurologist had already decided not to increase the Lidocaine dose any further.

The last four days of my stay I was quite miserable. I was placed on an “NPO” diet, meaning that I couldn’t eat or drink anything except for water. That didn’t really bother me because I couldn’t eat if I wanted to, my jaw was extremely painful, swollen, and continuing to spasm. My doctor explained my jaw situation to me in this way; “What happens when someone tears their ACL? They immobilize it, have surgery, and continue to keep it immobilized with no weight for several months. That’s what happened to your jaw. Except you just “tore your ACL” or dislocated your jaw three times in two weeks, and “had ACL surgery” or got your jaw reset three times in two weeks. The only difference being that your jaw isn’t immobilized.” After the first reset of my jaw I was told to expect a three month recovery, three months before I could eat normally again or not have pain and movement issues. Three months is now nine months. I was thankful for the ACL comparison because that made me feel less like a baby, and it also gave me a good way to explain the ordeal to others in a way they may better understand.

The best part of hospital stays is having visitors. This time I actually remembered most of them, even better! My sweet best friend came and spent several hours every. single. day. She sat in bed with me and didn’t say a word when I needed to cry because I hurt, she kept my ming off things playing UNO and Hangman for hours, she communicated for me when I couldn’t do so for myself and she stayed the night with me when she knew my parents needed a little break. I wouldn’t be doing as well as I am today if she weren’t around this time. My other friend came on several of her lunch breaks, friends surprised me and some came after work. The social support continues to blow my mind. I’m so so thankful.

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I got to go leave the hospital on May 20th, ten days after being admitted. I left with my head pain at a level 7 out 10. The Lidocaine had kept my headache level at a seven for about three days in a row, this was something my family, Dr. Cheesy and I celebrated! We all knew this was a big step for me. Unfortunately to consider the Lidocaine infusions successful,  I would’ve had to walk out of the hospital with a level 1 or lower headache. I was super bummed that didn’t happen and I’m having to cross of yet another treatment. But I got to try it! So at least now I know! I’m very fortunate to have access to these treatments and very thankful for this amazing new doctor. Until Dr. Cheesy can say that I am “stable”, he is having weekly appointments with me. WEEKLY. It’s amazing. Every week we get to talk things over with him, switch any medications around that we may need to, and discuss the next plan of action. Though I have been super bummed that I haven’t been doing great, I have been living off of IM shots and other rescues, I now even have to wear a pain patch, I haven’t been in the hospital for ONE MONTH. I couldn’t be more excited about that!!!! I’m still on a mostly liquid diet. I think I’ve tried a baked potato from every single restaurant around. lol and I have to carefully plan my days and my shots. But Dr. Cheesy has kept me out of the hospital for FOUR WEEKS, and that is four weeks longer than any other doctor has been able to do for a year now!!!!

This is such a long post that continues to ramble on and on but I needed to get this way overdue update posted!

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9 thoughts on “FOUR WEEKS

  1. Hang in there, Hadley! I can only imagine your struggle, but I love your positive attitude, and I’m so proud of your friends who stand by you, and your other friends and family, of course. You are always in my prayers.

    Liked by 1 person

  2. Hadley you and I have never meet but I know your grandmother Laura through playing golf at Columbia Country Club.
    I as well as many other people at the club ask how you are doing. I know you have a lot of people praying that this new doctor
    will be able to help you. It sounds like he is on the right track and you are so strong
    and courageous . Just keep fighting the
    good fight. My prays are with you.

    Liked by 1 person

  3. Although the lidocaine wasn’t a big success, I’m so happy that you’ve found a way to be out of the hospital for 4 weeks! Enjoy having the normalcy (as normal as it can be). Keep your positive spirit, and all of us from PCU will keep praying for you! 🙂

    Liked by 1 person

  4. Hi Hadley,
    So sorry to hear of your struggles! I too have HM and I read about your jaw problems and have questions for you as I have that too. Is there a possibility I could private message you? I thank you for putting yourself out there!!
    Sincerely,
    Becky💛

    Liked by 1 person

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