Oscarisms

Ever since we received Alexis diagnosis of Long QT in October I've been writing letters to organizations trying to find help in getting one.  It seems I've written, and written and written.  I've researched grants, and contacted people. I've had two return replies the rest have gone completely unanswered.  Very detecting. This morning at 8 I contacted the Mikey Network and at 2:30 they called me back saying they would be sending one out to Alexis next week. Complete tears of gratitude. Such a huge weight lifted off of my shoulders. There are such simple things in life to be thankful for.  A beating heart, a breath of air, charity, kindness.  So many intrinsic things.

An amazing thing happened today.  I was able to meet a lady who was a sudden cardiac arrest survivor, has an ICD and has long qt.  we met at Starbucks and talked for hours.  It was a first for her and a first for Alexis and I.  Very humbling, sobering, but so amazing to meet and discuss such huge dramatic life events.

Apparently experts say that there is no correlation between headaches and Long qt.   I wonder about beta blockers and migraines.  Is there a correlation there? Or is it brain injury and migraines that correlate? Long qt can cause arrhythmias.  Arrhythmias cause impeded blood flow. Impeded blood flow causes migraines. Or Beta blockers alter your body's adrenaline production.  Migraines? Or brain injury? Lack of oxygen during SCA causes huge issues with brain injury.  Could a brain injury cause migraines? All I know is I didn't have them before but now I do.  Is there a correlation there? Severe enough to cause rage, vomit, motion issues? Or am I just blessed to get them? The frustration of not having answers to my questions is huge.

A month after my SCA I was back in the hospital in the same ward after having collapsed from my ICD blood infection.  I even met the nurse that was my nurse the day I had my SCA. She was a young student nurse.   On the day of my SCA she spoke to me at 7:10 am. She did her morning checks on me, and I told her I was going back to sleep for awhile. I'm so not a morning person.   She said she had an overwhelming urge to go back into my room at 7:20 am.  Which is when she found me blue, with no heart beat, no breathing, no pulse.  She thought I was dead.  She jumped on me and started CPR.   It was hard to hear that story one month later when once again I was there because of the complications from my ICD surgery and critically ill.    Weird things:  1) the only reason I was on that ward after my kidney stone surgery is because the hospital was at capacity in other basic wards.  I'd spent days in the ER prior to my surgery because there were no beds. What would have happened if

Horrible nightmare about my CD today.  I woke up from a nap on the couch with my back hurting so bad.  I stood up trying to ease the pain but could feel something under my tshirt above my jeans.  I asked Myles to check it out.  It hurt so bad.  He pulls my tshirt out of my jeans and he says there something mechanical back here a box.  I asked him to open it. I can hear things sliding and opening.  I ask him if there is blood back there he says no, but my left arm is just covered in blood, it's dripping from my fingers to the rug.  My front is covered in it. :(  I ask him what it is, he gets very quiet.  I can hear the kids starting to come downstairs, I yell at them to stay upstairs but they don't listen. The blood is just running down my arm, it's so deep redish. I ask Myles what is it? Very very quietly he says I think it's your ICD.    I start feeling dizzy and faint and my eyes are glued to the red blood running down my arm and dripping from my fingers.   The

I loved being pregnant.  I absolutely revelled in it.  I might not have glowed but I certainly thrived on it.  Myles and I never wanted to know the sex of the baby.  It was just getting popular to know, but we wanted the surprise.  The ultrasound tech always told me she wouldn't be able to tell us even if we wanted to know as the babies were shy.   Not sure if it was true or not but it made our decision much easier.  But so many people wanted to know. It was like it was their right.  We always laughed and said it didn't matter to us as long as the baby was healthy. We must have said that hundreds of times. As long as the baby is healthy.  We never stopped to consider what if the baby wasn't healthy. Never even considered it. Now 13 years later baby #1 has a genetic sudden death syndrome called long qt.  an electrical default in the heart which can cause sudden death. Baby #2 has autism. He had the diagnosis aspergers but that was eliminated by the pros so now he has a

We had an epic snowstorm over the weekend.  Roads are crap.  Close to 11 inches.  Roads are crap.  Did I mention roads are crap?  Which leads me to anxiety.  Just the thought of stepping outside the door leaves me clammy and sweaty.  I'm not really sure why.  But I'm just freaked about it.  High anxiety.  Why?