this is from last week, read end of post for todays update
Friday after school Tom said Emily was acting strange and I thought maybe it was just the nervous excitement of going back to cheer after 2 months off. I went next door to talk with a friend for a bit and watched as Emily practiced her cartwheels/round offs and stretched out, ran around for awhile etc. Then we left for cheer , she was so happy to be back and they started learning the new routine the first day back.. her smile was awesome. Then it hit, after class she just got this panic look on her face and said she couldn't see. I thought she was feeling faint or something so sent her to get Powerade and sit for a bit while I talked with her coach/other moms. We left the room and went outside and she was really whiny, then she started crying which is unlike her.. so we got in the car and decided to head to the urgent care. I went to 2 and they were closed ( at like 8 pm wth kind of Urgent Care is that???) So then she was not breathing right and she started jerking around on her right side... I started to freak and consider pulling over and calling 911 but we were less than 10 from the ER so I kept going. We got there and they took her in without blinking, started an IV to draw blood and give her meds. They took her off for a CT scan to make sure she didn't have a head injury etc. I had no clue what was going on when the Dr. came in and said they needed to transport her to Childrens Hospital FL in Orlando. So we take the ambulance ride there.. finally after a bunch more tests she goes to her room at about 6 AM and we attempt "sleep". 8 AM and out for more neurological tests.. they attach a bunch of things all over her head and run EEG, not once but twice ( can't wait to see what this costs). Then they send her back to her room. Wait, wait, wait.... a Dr. comes in and tells us we can probably go home that day she's pretty sure she has the same seizure disorder I do and was gonna give her the same RX I take. Then the neuro tests came back negative so the Dr was like that makes no sense, we witnessed her seizure activity. They decide to start looking somewhere else for the cause and tell us she'll be staying until they have an answer. I was just exhausted and starving.. I'm still beyond exhausted because I can't even sleep at home. ANYWAY they run an EKG ( really an ECG but most people call it an EKG). The results are completely telling. She has Long QT Syndrome. They run it over and over to be sure and the results are 100% each time. This disease has no cure, her heart does not recharge the right way.. I'll post a link at the end of the blog because all the medical wording makes my head spin. If you want to understand read the link please. Basically the deal is.. she's dying right now every time she has a siezure or faints. She will need surgery in the next few weeks to implant a defibulator to try and combat the electrical issues in her heart when it doesn't recharge on it's own. Her version of this disease is very severe, we will be spending the coming weeks at many Dr appts, specialists and it looks like I will be dropping my schooling again until life calm down in our house.My heart is broken....my daughters spirit is broken and she is scared. There is nothing I can tell her to make it better. She loved cheer and now she is limited to ... NO physical activities etc. I don't know what to do for her and I cannot lie to her. She asked me if she was going to die yesterday and I couldn't answer her because I don't know.
I'm sorry if you've called and I haven't answered. I don't have any energy and I'm heading back to deal with more Dr's when I'm done typing this.
this is her Cardioloigists site, he said it would answer family/friends questions that I can't answer right now.http://www.carson-appleton.com/long_qt_syndrome.htm
update as of 3/5/09
Emily will be having surgery on her heart the first week of April. She needs a defibulator. We are in debt over 30 grand right now without the surgery or the entire amount of bills. Life is falling apart a bit.. obviously financial issues can ruin a relationship with the quickness so I am trying to embrace my daughters grim chance at living past 15 and getting out of my 9 year relationship. I am lonely,scared and broke. Welcome to back to single parenthood Amber. I am praying my relationship can be saved and that if God shows mercy he wont take my child. As great as she is I am not ready to let go and share her.
I haven't seen my mom or any family since May. I miss my friends.. I miss Ash. Life is spinning out of control.I want my daughter to be better... I can't fix her. How do you live after a child dies? Is there anyway to heal your heart? I feel like I can't prepare for this. I need some help... is anyone there?