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.