Month: July 2013

I need to thank my Mom!

Yesterday was an awful day and that is only because of how it ended. I had a great day with my friend Alyjah yesterday, we all celebrated my sisters birthday and it was a great day. We went out for dinner at the Olive Garden, Mallorys favorite place with My mom, Mallory, Alyjah, and myself. I ate well and we had a great time! After that we spent about an hour at the mall and I didn’t walk a whole lot but it was the most I’ve walked since camp (2 weeks ago). Right before we left I passed out and fell to the ground. I got picked up and set down on a couch at the mall and finally came to, but every time I tried to get back up I passed out. This went on for about 20 minutes. So I finally got carried out to the car (passed out). I want to send a big thanks to Alyjah, I know it was a scary thing for him to see and I appreciate him catching me. When I got home I passed out getting out of the car and then again while getting in the house. My body honestly felt like a noodle. I had no strength. Here’s where my day/evening becomes absolutely awful. My mom talked to my GP and they decided I should go to Peyton Mannings Children’s Hospital to get some scans and lab work done to check my electrolyte levels. It wasn’t planned that I stay overnight we just wanted to get some lab results before my appointment with my GP. I was frustrated with the fact it was another hospital appointment but my mom and I were hopeful that this would possibly give us some new answers. We arrived at the hospital and as soon as I got there I passed out. they put me in a wheel chair and took me in but then they left me unattended in the middle of the hall passed out in a wheel chair while they took my mom away to fill out paperwork. After that they put me in a room and put numbing cream on my arm to start an IV. My GP had called ahead to et them know what she wanted them to do with me so my mom informed them of that and the resident said she had no idea who that was and that she’s never had any of her patients. She took my history and then looked at us and asked us what we wanted to get out of this visit tonight. My mom replied “hopefully some answers” and the resident looked at her and told her that her daughter was 15 and that I should speak for myself. She then asked me and I told her that I hoped to get the lab work done and hopefully find some answers. After looking at us for a few minutes she said” You seem like a very complex case and I’m not sure what we will be able to do for you tonight. They put an entire giant IV in me to only draw blood. They told us it would take about an hour for the results to come back. In the meantime they checked my blood pressure in multiple positions. Yet, when the one nurse left she didn’t put the rail up on the side of the bed so when I passed out I almost fell off the bed onto the tile floor if it wasn’t for my mom catching me. She came back 20 minutes and told my mom that my calcium levels were fine and that we could go home. Now if you remember me saying earlier we came for an entire lab work up on my electrolyte panel, NOT my calcium. My mom questioned why and she said that she only felt it was nescessary that they check my calcium levels. They then tried to get me out of there as possible and had we not reminded them they would have never taken the giant IV out of my arm….and when she finally did she completely tore up my arm, and bruised it. My mom and I hurried out and summed it up to the fact that God works in mysterious ways. There are so many other things I could say about that hospital but to sum it up I will never go back there. I had an appointment with my GP today and we think we’re onto something. We think I might be taking too much Atenolol which could be causing me to pass out because it is making my blood pressure really low. Today I passed out a few times but the worst was when I fell out of bed and landed on my shoulder. However it is an improvement from yesterday so I have to look on the bright side. Anyways I wanted to blog tonight because I wanted people to realize how amazing my mom is. I can tell everyday by the look in her eyes and the way she talks that it worries her to death. My mom has gone to multiple emergency rooms, countless doctors appointments, she’s caught me in her arms numerous times, and she’s gone out of her way to do things for me. My mom loses her sleep and stays up late researching things about me, she fights with the doctors when she feels they are wrong, but most of all she’s been there for me. Nobody has gotten me through this besides my mom and my faith. I appreciate my mom helping me more than she will ever know but I guess this is just a small way of reminding her. I love you mom. Thank you.

Advertisements

On the bright side……

So I’ve had quite the eventful time since Thursday. Friday went awesome, I didn’t pass out at all! Saturday was just as good! I went to Chicago with my family on Saturday and got back today! I was outside a lot on Saturday (for the first time in a LONG time). I seemed to stay well hydrated and had a good amount of sodium in my body! *thumbs up* However, today was a not so good day. I passed out while eating out at a restaurant today with my family, Caleb, and grandma to celebrate my sisters 14th birthday (takes place tomorrow). I guess I felt well lets see how do I explain this I felt lightheaded and they got me some crackers then I did what seems like an awful thing to you normal humans but to me is a healthy thing yet extremely disgusting; swallowed a handful of pure salt. Sadly, that wasn’t enough…..and I was out. It was a little frustrating yet more embarrassing I think. I was still very happy that I had gone 2 days but embarrassed by the fact that my legs were being hoisted up in a booth at a restaurant. According to my mom my face was as white as sugar. I can only imagine the amount of looks I got. The waiter very nicely helped us out and the rest of lunch was good. Of course I had to explain later to the waiter what was wrong with me…… Usually when I pass out once it happens again later on in the day which it did. I passed out while walking down the stairs and hit my head on the wooden part at the top of the stairs, followed by a seizure. I guess my mom found me laying on the stairs. That was quite the experience…. ): I am bummed out I got replaced for a babysitting job this week…. I feel limited and restrained once again…. I guess all I can do is keep a positive attitude because if I could make it 2 months at one point and 2 days yesterday then I can do it again!

The Banana Peel! /:

I’m trying to keep an extremely positive outlook on things….I made it home now I just have to stay home. I passed out twice last night….I’ve realized two things lately; I usually get a head ache in the lower right part of my head before I pass out, and I’m also not really able to talk and warn someone however I am able to do things. The first time last night I stood up and knew I was going to pass out soI waved my hands around in the air but that clearly wasn’t enough because Mallory (my sister) and Gabby (my best friend) failed to understand and I fell on my side. The second time I tried to warn them by throwing my banana peel at them but that also didn’t work and I face planted…… -____- . I went outside for the first time in 7 days ( I have been outside just the only times I have been were to get out of the car or from being transported by ambulances) I only got to spend about 15 minutes outside but it was really nice! Tonight my parents went out to dinner with some friends that were staying at our house for the night, while they were out my younger sister had to literally watch my every move. I couldn’t get up unless her hands were on my waist, I just had to sit on the couch.  I passed out once but it wasn’t until they got back. My mom caught me but I didn’t get a headache until after I came to. Of course I’m sure I probably scared my parents friends to death, I feel bad they had to see it. I’m trying to stay positive it’s just SOOO hard to do! I try to tell myself that it’s an improvement from the day before and that’s all that matters but I just can’t do that at times. I’m supposed to go to the Train, Script, and Gavin Degraw concert tomorrow but that all depends on how I do tomorrow. ): I don’t usually ask for help but my appointment with the Cleveland Clinic isn’t until October so maybe if you could pray that I make it through these next few months safely I would really appreciate it, Thanks.

-Meri

I’m Home! :D

Yaaaaay! I got released at about 1:30 this afternoon from Riley Children’s Hospital! My EEG was taken off this morning (hallelujah) around 9 o’clock! I’ve had an EEG previously this year in April and everything came back good, but just to make sure they did a second one. Now let me tell you there are definitely worse things on this earth than EEG’s and I try to remind myself that but they just make my head itch so bad and the glue is just so dang hard to get off!!! I was so relieved today when the nurse took mine off and I still had my eyebrows on my face (there was an electrode with tape placed over my eyebrow) I was just so positive that they were going to rip right off! The EEG  results came back great, I had one episode while on the EEG but it didn’t show any negative brain function which was an awesome thing! I also had blood work done yesterday because in April I had low potassium levels and it was questioned as to weather that was the case again or not, but it wasn’t all came back good as well! So other than NCS there hasn’t really been anything that anyone has been able to put a finger on, frustrating I know because more than anything would I like to know what’s going on but I guess I will just have to trust in the Lord that he will take care of me. I look forward to hopefully spending the rest of my summer syncope free as there are so many things I’ve planned on doing but haven’t gotten around to! We are trying to get a new appointment set up with the Cleveland Clinic (for syncope), and also have some other appointments aligned. Hopefully a few new set of eyes on things could do us some good! I appreciate all of you spending your time reading these blogs! I guess it just makes things so much easier when I can explain it on here and update you from here rather than type the story a bazillion times! I really look forward to getting some new answers and making a plan on where to go from here on out but until then it’s just me and my water bottle stuck together!

-Meri

Meet Bayleigh! (:

While at camp this previous week I was so very blessed to have been able to meet this amazing girl Bayleigh. Bayleigh and I struggle with somewhat similar things. We both seem to pass out and for a while we both thought we knew what our diagnosis was and had things under control. When I passed out for the first time at camp I was informed that there was another girl here who struggled with NCS as well. I was shocked and elated to realize that I wasn’t the only 15 year old girl struggling with such a frustrating disease. Yet I felt awful at the same time, as happy as I was to know I wasn’t alone I felt awful that somebody else was going through such a frustrating thing! Bayleigh and I bonded throughout the week wether we were passing out or just talking. When one of us passed out no matter where the other one of us was we always seemed to rush over and help out. It was honestly SO comforting to know somebody else felt what I felt and did what I did. Up until now I’ve felt like I was literally going insane because nobody could explain what was wrong with me and it continued to happen. Although Bailey and I still don’t know exactly what is wrong with us and might not have the same exact diagnosis in the end it is still so comforting and helpful to know that there is someone else who understands. As I type this Bayleigh is at the Cleveland Syncope Clinic in light of hopefully finding some answers to what’s going on with her body! Before visiting the clinic Bayleigh was diagnosed with NCS on February 2nd 2012 (just to give you some hints along the way this is a little different from me as I have passed out since I was little it just wasn’t as frequent until after my concussion!) Bayleigh’s NCS was also different from mine in a few other ways; from May 2013 up until now she’s been passing out multiple times every day, and hers isn’t necessarily triggered with sodium either. However Bayleigh’s and I’s are very similar as well; we have the same symptoms, we both can tell when it’s going to happen, and we are both cheerleaders(flyers), we are the same height, and weigh the same. Today at the Cleveland clinic Bayleigh was informed that she does not have NCS, a big eyeopener for all of us. Maybe NCS isn’t something either of us have, or maybe I do and she doesn’t. All so many questions and I guess the only way to answer them is to wait it out and hope for the best. Again I feel more than blessed to have such an awesome friend enter into my life.

On the right track?

Well here is your update for you. I went all day yesterday without passing out up until about 9:45, I was getting a little frustrated and went in to talk to my mom after talking to her I went back into the living room and passed out but Caleb caught me.According to my mom; I was out for about 90 sec. and came to then went out again for about 60 sec I was non responsive at that point which is very strange and has never happened before. My legs then started to twitch followed by a seizure (something that has never happened to me before) that lasted about a minute. Therefore 911 was called and I was put on oxygen and taken to Riley Children’s Hospital where I am currently. While in the ambulance I passed out twice and was non-responsive all the way until we reached the hospital. While at the hospital (in the E.R.) not much was really done rather than just being watched. I seemed to have 2 more seizures while my mom was with me. My jaw locked as well which was kind of strange and random. I passed out a couple of times in the E.R. and dazed in and out. At about 5 in the morning we made it up to our room and I fell asleep. At 7 we went down to the lab and I got hooked up to an EEG (see my lovely selfie -____-) I will have the EEG on over night to see if any more seizure occur. Neurology has been able to rule out Epilepsy (a type of seizures) so that is A VERY GOOD positive! *sigh of relief*. Blood work was done about an hour ago so they will check that for other things. Now we just wait…….and eat! (that is if my food ever gets here) I also would like to ask that if you’re reading you say a prayer for a little girl named Talia who passed away today after a 6 year battle with cancer. Again thank you so much for all of your prayers and positive thoughts. Hopefully we will get to the bottom of this.

About Me.

My name is Merideth and I am 15 years old. I have Neurocardiogenic Syncope. For most of you that don’t know what this is it’s best described kinda like this. When I have episodes my blood vessels tend to expand which leads to the pooling of blood in my legs, because of this the flow of blood to my brain is reduced which causes me to pass out. I’ve passed out since I was little but it was never a very major thing. I went to the cardiologist and had every test under the sun done but they all came back perfectly normal and it was just kind of brushed under the rug. In the middle of my Freshman year on December 7th of 2012 I passed out in a cheerleading stunt and fell 1o ft. from the air, the first thing that hit the floor of the basketball court was my head. I was in a neck brace for a month and had a concussion for about 2 months. Ever since my fall my fainting spells seemed to be worse, I was passing out at least once a week. After multiple trips to he hospital and many many many tests later it was determiined that I have NCS. I tried many medications and finally found two that seemed to do the job; Atenolol ( a Beta Blocker) is used to lower my blood pressure, making it harder for Syncope to occur, and Fludrocortisone ( a Corticosteroid) is used to help my body retain salt, something it has a very difficult time. After finding the “right” medicines I was able to go 2 months without passing out which was a huge deal after not being able to go a week without passing out for about 5 months. Up until this week I was having a great time. I seemed healthy for the most part and was able to do things all my friends could without having the constant worry of passing out. On July 10th of 2013 it seemed as if I was tossed right back to the beginning again after I fainted for the first time in 2 months. On July 13th I passed out 12+ times in one day. I feel a little defeated because I am now back where I started, and we are a little confused as to where we should go from here. I of course am just wanting to be treated like a normal teenager and not have to be constantly watched. It’s frustrating having a disease that limits you from doing what every 15 year old wants to do; be active. I guess this blog is a way to vent and hopefully track my recovery and healing. Also maybe to give comfort to those that are also dealing with NCS.