8 days

It's been 8 days. 8 days since Anna's last episode. This is the time where my stress level rises and I'm on high alert. I'm waiting for her to collapse in the living room, or for her to wake up in the middle of the night sick as a dog, or to get a call from school that she is not doing well. I hate this. I hate always waiting for the next episode to come.
Since her last episode though, it's been a pretty good week. Adam turned 16...what??? Crazy! I can't believe I have a child that has his own car and can drive! Insane!! We celebrated his birthday by going out for dinner. Anna was having one of her good days, thank goodness! It would have been horrible if she was sick that day. The rest of the week has been pretty low key, except for a lot of driving with Adam! Anna had a few really good days where she was feeling great, but Saturday she hit a wall. She went to bed around 10:00 pm Friday night and slept until around 10:30 Saturday morning. She stayed upstairs for about an hour then went back to sleep. I woke her up at 4:00 pm because we were going to Mass. She was too sick to come. She went back to bed a bit later and slept through until the following morning. She was not awake very many hours on Saturday, but when she was, she was pale and sickly looking. It's so hard seeing her struggle to just keep her eyes open and to try and focus. Some days she just doesn't have anything in her to give.
In some ways, the day to day living is more difficult than the days that she has her episodes. The days where she ends up on the ground, are the days where her illness is visible. These days are horrific and traumatic and exhausting but are the days where I just get to hold her and comfort her and love her. I just get to be her support. The days where she is having a great day, or even just somewhat functional, are so hard. These are the days where I want to be her cheerleader. These are the days where I try and push her. I try to motivate her. I try to get her to push her limits in the hopes that it will help her recover. I don't know if I push too hard or say the wrong things. I don't know. I just know that I am her mom and I have to be the one that stands with her no matter what. The one who pushes even when she pushes back.

Wicked

Can I just say that I absolutely, 100 percent despise dysautonomia!!! I hate how it rips a persons life apart. I hate how it turns a perfectly healthy, active individual into a person writhing in agony, unable to move, trembling like she's having a seizure and trying to breathe. Dysautonmia is wicked and I wish that I would never have heard this word.
Yesterday was supposed to be a good day. It was Anna's last game of the season and she wanted to play. She had participated in some practices beforehand and knew that her body wouldn't let her play a full game, but was hopeful to get out there for a couple of runs on the field and maybe a kick or two, She wanted to take a season that was full of trials and frustration, and end on a high note. She showed up for the pregame warm-up and did as much as she could. She was worried that if she did the full hour of warm-up, her body would be too fatigued to actually play the game.  The game started and eventually Anna was put on the field. I was nervous and excited. I wanted her body to allow her to have a moment of feeling great, a moment of overcoming this, a moment of being a part of a game that she loves. That was not to be. Two minutes of her playing and she was sitting on the sidelines with the team trainer. I was watching like a hawk. Although he has spent a lot of time helping Anna through rough times and I was confident that she was in his care, I was watching, petrified that she was suffering. I watched and begged God to make things ok. That's when I saw him raise his hand to me and call me over. My heart dropped. I knew if he was calling me over, it couldn't be good. I ran across the middle of the field...thank goodness it was half time now! It didn't take me long to get across that field. I dropped to my knees when I saw her and knew she was in rough shape. She was trembling and shaking, Her muscles were spasming and she couldn't catch her breath. She was pale and her hands were ice cold. I tore my jacket off and just laid it over her  jerking legs and hands. We needed to get her out of here and fast. They delayed the game as I ran back across the field. I yelled to Matt that he needed to go help carry Anna off and I would pull the vehicle around. We raced to do what we needed to do. I watched as Anna's body is being carried across. They laid her on the concrete, covered her in blankets, until I got the vehicle closer. They carried her to the car, and laid her in the backseat. We sped away not really knowing what to do. We have been told so many times that we don't need to bring her to the hospital because there is nothing that anyone can do for her. Anna was begging us to take her there. My head was fighting with my heart. I wanted to rush her into the ER instantly and make sure that she was ok. Instead, we drove to the hospital so Anna knew we were there. Then we sat. We sat in the Emergency room parking lot waiting for it to pass. These episodes typically last for about twenty minutes. I was waiting and waiting, trying to will it to stop. Anna would go from crying in pain, to completely silent as her body shook with convulsions. Matt stood at one open door of the vehicle, and me at the other. We talked to her and tried to soothe her. Nothing was helping and my frustration and anger was growing. I was mad because I felt like I couldn't take her in to the hospital because the doctors told me there was no point. It's almost like they get mad at me if I take her there. Do they not realize how horrific it is to stand by and do nothing as your child lays there suffering, begging you to take her in to the hospital?? After about 15 minutes in the parking lot, Matt and I both said, enough is enough. She wasn't getting any better and it was going on for too long. Matt went and got a wheelchair so we could get her into the hospital. We sat her in the chair, covered her in a blanket, and walked into the Emergency Room. We went straight to registration. I told the nurse Anna's diagnosis of dysautonomia, and she had never heard of it. It's not her fault, but once again, makes me feel so hopeless. We got through registration, and were left sitting in the waiting room. Anna was obviously in a tremendous amount of pain and truly suffering. She was shaking all over and every few seconds, her hands would clench into a fist and make jerking movements. Then her legs would jerk out and spasm. Every nurse that walked by looked at her and then looked at me with sympathy in their eyes. We weren't waiting for more than a few minutes, and we were brought into the room. Once again, the nurse and Doctor had not heard about dysautonomia. Her episode lasted for almost an hour. An hour of unbelievable pain. An hour watching my beautiful daughter suffer. An hour of wanting to scream at the top of my lungs for some answers.
So this is why I hate this disease. It takes everything from a person. Reality hit yesterday. Anna's body is not capable of playing the game she loves. Her body is not capable of participating in daily activities. Her body is not capable of living the life she wants to live.  Dysautonomia has taken that away. A chronic illness that no one understands. An invisible illness that is wreaking havoc on a beautiful girl.

BPM

I was expecting to have to wait a long time until our next appointment at Children's Hospital but we got the call fairly quickly. They called me on a Friday and wanted us to bring Anna in the following Monday. We got through the weekend and I was praying that Anna would not collapse at the hospital this time! I was desperate for her to get on that treadmill to see what the heck was going on!!
We made it to Vancouver and waited anxiously in the waiting room at the cardiology clinic. They called Anna's name and brought her in to get her hooked up to all of the monitors. She was ready for the stress test. Anna was sitting on the gurney waiting to go on the treadmill. Her resting heart rate was 86. She stood up, and her heart rate jumped to 130-140 (I can't remember the exact number). I was in shock. How could her heart rate jump so high just by standing!! I guess with dysautonomia this is a pretty standard thing. She jumped on the treadmill and began to walk. She worked herself up to a slow jog and lasted for 8 minutes. Her heart rate was just under 200 BPM. As shocked as I was to see these numbers, it at least brought me some validation that she has some crazy things going on with her body! We sat down with the cardiologist again to go over a few things. He decided to put her on a low dose beta blocker to try and control her heart rate. We were happy to try anything! We left with the prescription in hand and hope that this might actually make a difference in Anna's life.

Roadblocks

I am sitting here anxiously waiting for Anna to come home. We try and let her live her life as normally as possible but sometimes it's very scary letting her go out when I am never sure if she's going to be ok. She went to Vancouver with a friend to do some shopping today. She texted me about an hour ago saying she didn't feel very well and she had been sitting on a chair in the mall for about an hour because she had no strength or no energy. Thankfully, her ride was coming to pick her and her friend up and drive them back to Chilliwack, but my heart is in my throat as I wait. I think one of my biggest fears is that Anna will have one of her episodes when I am not close by or she is with people who don't understand what is happening. I spoke with a lovely lady about a month ago and she spoke very wise words. She said at some point, you just have to trust that she is in God's hands and what will happen, will happen. So I will sit here and type away praying and trusting that she will be fine.
I'll go back to my previous post. I made a Dr's appointment to discuss dysautonomia with my family physician. My goal of the appointment was to try and find someone, anyone, that was local who had any understanding of this diagnosis. I also really wanted Anna to go back and do the stress test on the treadmill. I felt like I couldn't rest easy until that was done. I walked into the appointment with some hope. I sat down in the room and waited for the Dr. The door opened, and in walked a resident Dr. (He was amazing) Anyways, he sat down and asked what he could do for me. I explained that what I really wanted was to speak with a Dr locally who had some knowledge about dysautonomia. I explained that we felt a little bit alone trying to figure this all out and what steps we should take. He was very kind, but he looked at me and said that I would be lucky to find a Dr in all of Western Canada that could help. Once again, I felt like I was punched in the gut. The roadblocks seemed endless. We spoke for quite a while then my Dr came into the room as well. I explained my frustration. He was really good and agreed that Anna should complete the stress test. He said he would get in touch with Children's and get the appointment set up. I left the office encouraged that she would get the stress test done, but discouraged that I couldn't seem to find any answers. I wasn't ready to believe that there was nothing that could be done. So the fight continues.

Laying in the hospital bed

Laying in the hospital once again after being taken there by ambulance.

Picture on the left is of course, children's! The one on the right is during one of her episodes. She is laying on the kitchen floor unable to move and  her hands etc are seized up. This one lasted almost an hour.

Reality bites

After coming home from Children's Hospital with the news that Anna had a chronic illness,we were still in a bit of a daze. As happy as we were that her heart was fine, we couldn't fathom that this was going to be her life. We couldn't imagine a life of these episodes that were happening weekly. We couldn't imagine a life where Anna was basically unable to function on a day to day basis. We couldn't imagine life where so many nights were spent laying on the kitchen floor as Anna's hands and legs seized and trembled, and she couldn't see anything or couldn't hear anything. We couldn't imagine a life where Anna didn't play competitive sports. I remember sitting down one morning while everyone was still sleeping, a few days after her diagnosis, and searching the internet for any information. (The cardiologist at Children's said most doctors are not familiar with this condition so we would need to do our own research). I came across this site and read this article and it completely brought me to tears and this is the moment that reality hit me.(Here is the link if anyone is interested in reading it! http://www.dynakids.org/schools.jsp ) This is the moment where I realized that her life had changed and so had ours. I cried for hours. I sobbed about how life had changed so drastically in such a short amount of time. I cried about how Anna had to spend so much time in a wheelchair because she had no energy to move and no strength to hold her body up. I cried just envisioning a quality of life that was so incredibly different than the life Anna had only months before. I felt robbed of what her life was supposed to be like. This is also the moment when I said to myself that this will not be her life. It may be like this for a short amount of time, but I refuse to believe that this is it. I refuse to believe that there is nothing that we can do to help her at all.The next day I made an appointment with my family Dr.

A day of answers...sort of

Do you ever feel like you are always on edge? Always waiting for the next ball to drop? That's how I feel like I've been living for the past six months. Anna had another episode at school today. I got the call around 1:30 and I rushed out of work. This has been the longest time in between episodes so I wasn't really surprised that I got the call, but it still rips my heart out each time. I think the longer the time passes between episodes I am desperately hoping that she is getting better and she is finally on the road to recovery. Then, bam, reality hits and I know we still have a long way to go.
I'll go back though to my previous post. We finally had a referral to Children's and the date couldn't come soon enough. It was originally booked for January 6, but then got pushed ahead to Dec 22. Thank goodness! I won't bore you with the time before our appointment but just give a snapshot of what it was like. Basically, she had episode after episode. She was taken by ambulance to the hospital numerous times due to severe chest pain and collapsing to the floor. She had an overnight stay in the emergency room. She spent hours curled up in a ball on our kitchen floor unable to move. She had severe sensitivity to noise. She had episodes that looked like a seizure. To sit, as her mom, and watch her go through this, was, and is, so painful.
Dec 22 finally came. We got up early excited to finally get some answers. Anna was scheduled to have an echo cardiogram, ECG and a stress test. On the way to the hospital, I told Anna that this was her day to be fixed and life would be better from here! We arrived at the hospital a couple of hours early....I was so worried we would hit traffic and be late! We spent some time walking around then sat in the food court for a while. Anna started complaining of a headache. I had noticed recently that headaches can sometimes come prior to her having an episode. I decided we should just go and sit in the Cardiac unit and wait for our appointment and I was praying that Anna would be fine. We were sitting in the waiting room, and Anna's name was called. She got up, and Matt and I followed her. The Doctor took her to weigh her and measure her. As she was standing there, she looked at me, said 'I don't feel good", and collapsed. Immediately, she had the attention of all of the medical staff. They put her on a gurney within about ten minutes. Anna does not remember any of it. They brought her to a room and gave her juice and cheese. Once she started to feel a bit better, they completed the ECG and echo cardiogram. She was too ill to do the stress test. Once everything was done, we went to talk to the cardiologist. I remember sitting there, so excited to get some answers and to finally give Anna some relief. The cardiologist sat there, looked at all of us and said, 'You're not going to like what I have to say. Anna has a chronic illness called dysautonomia and there is no treatment or no cure'. I felt like I was punched in the gut. I looked at Anna and could see pure devastation on her face. What we thought was going to be a day of treatment plans and a road to getting better, turned into a day of complete and utter disbelief and shock. We talked a bit more with the Dr and left the office. I don't think reality had hit any of us. Reality came later.

Appointments, appointments....and more appointments!

We were lucky enough to get in to see our family Dr the following week. I really had no clue as to what was going on or what to expect. He told us that Anna needed to go for another ECG and would need to wear a 24 hour holter monitor to monitor her heart. Perfect. I just wanted answers. We went for the ECG the next day and she was booked for her holter a couple of weeks later. Her ECG results came back fine. While we were waiting for her holter, Anna continued on with daily life. She still participated in sports and all other activities. Unfortunately, every time she played soccer, she was being pulled off the field because she was almost collapsing. To see a girl who, a couple of weeks prior, was playing a full game without being subbed off, to a girl who could no longer do a couple of runs up the field, was devastating, frustrating and so confusing! The time came for her to wear the holter. I was praying that she would have an episode while wearing it, but of course, she was completely fine the whole 24 hours! We get the results, and everything came back perfectly. We were of course happy that the test came back clear, however, we felt at a loss. We did not have any answers and we were desperate for them! Fast forward a few weeks, and Anna's episodes seemed to be getting worse. She was collapsing weekly. I was getting calls from her school to come pick her up and she was barely functioning. I was scared to have her leave the house because I never knew when she would collapse. We had an appointment to see a pediatrician. I'll never forget sitting in his office, him looking at Anna, and saying 'Are you sure it's not all in your head?" I was in shock. Here is a 14 year old girl, whose world has been turned upside down, having to listen to a comment like that. We did not go back to see that pediatrician.
At this point, we were either in Emergency or the Dr's office every other week. It was exhausting and beyond frustrating! Every time we were in Emergency, she was hooked up to an ECG machine and every time, borderline prolonged qt showed up. I wanted to scream!!! I just wanted a Dr to tell me what was going on and why she was having these episodes! Nobody could give me any answers.
It is now November and time for basketball tryouts. If you know Anna, she is an athlete and a competitor. She was named MVP last year for the basketball team and was so excited for tryouts. Unfortunately, near the end of practice, we get a call that Anna had an episode and they had called 911. I rushed out the door to meet her at the Abbotsford hospital. She looked beaten and broken down. My heart broke. Thankfully though, this is the point where a referral was made to a cardiologist for B.C. Children's Hospital. I was ecstatic. Finally!

Where it all started

Hey! So it's been over two years since I've last written anything on this blog. I have been contemplating the last couple of weeks on whether or not I should start writing again. I keep telling myself that I won't have the time needed to put into it, but then realized that it doesn't really matter. I can write when I want and if I don't get to it, that's ok too! This past year has been a crazy one and sometimes writing things out, makes things just a little bit clearer to me!
I'll go back to last summer...the summer of 2015. It was a typical summer. The kids were off on vacation, as was I! We did our annual camping trip up to Cultus and had many bbqs with friends. Anna joined a Soccer Tournament Team so we spent a couple of weekends in the U.S. She ended up breaking her wrist in one of the tournaments. Thank goodness it was close enough to Canada that Matt booked it across the border with her and she was seen in our local hospital! Insurance scares me and I had no idea if we were actually covered...I could only envision thousands of dollars in hospital bills! Anyways, she recovered fine from that and we enjoyed the rest of summer.
September came. The beginning of a new school year. Adam started grade 10, Anna grade 9 and Caleb grade 7. With the beginning of a new school year of course brings the new season of sports! Anna made Gold Rep Team for soccer and she was pumped! She had been to a tournament the last weekend of august and played great! The first week in September, I dropped her off for practice as I always do. She's at an age now where I don't have to stay for the practice which is great! I can use the time to get some other stuff done. I had dropped her off and had gone home to do some cleaning. About a half hour of being home, my cell phone rings. The same time as my cell is ringing, my landline starts going off as well. I answer my cell and it's a parent of one of Anna's teammates....she's actually a great friend of ours! Anyways, I answer the phone and am told that Anna is not doing well and we need to get to the field to pick her up. I was a little confused because she was absolutely fine when I had dropped her off! I rushed out of the house and honestly expected her to be absolutely fine by the time I got to the field. I showed up to the soccer pitch and walked towards where she was practicing. I expected her to come walking towards me. Instead, I was met with her coach basically almost carrying her off the field. She had no strength and was almost in a daze. I asked Anna what happened. She said all of a sudden she couldn't see anything and couldn't hear anything. She remembered asking her teammate for help but couldn't actually hear herself speak. She said everything went blank. Apparently Anna was saying things that didn't really make a whole lot of sense. Fortunately her coach was close by and lowered her to the ground before she hit it. I decided to take Anna to the emergency room. I had no idea what had happened. At the ER, she had an ECG. We were sent home and the Dr said he would call later that evening. About 11:00 that night I received the call from the Dr. He said everything looked good. He told us that borderline prolonged qt had shown up, but apparently borderline qt shows up quite often. Unfortunately, we had recently found out that a few people in our family have prolonged qt so I was a bit worried. I thanked the dr and said I would do a follow up with our family physician. This was the beginning of a long road with much heartache and lots of confusion, tears, ambulance rides and a new life for all of us. An episode on the soccer field has changed everything. This is her story.