So, I finally got the confirmation, and made the flight arrangements. We fly out September 26th. On the 27th we have the Stress Echo at 1, meet with Dr. Maron (the cardiologist) to go over the results at 2:30, then meet with Dr. Rastegar (the cardiothoracic surgeon) at 3. On the 28th we fly home. Hope everything runs on schedule!
Jake and I seem to disagree on why he takes a nap every day.. He says he is bored... so he sleeps... however the other day Jake had a friend over... and he asked me to take the boy home so Jake could take a nap.... Bored? I think not...
Jake
Right before the rug was pulled out from beneath us!
Tuesday, August 9, 2011
Saturday, August 6, 2011
Just another turn on the roller coaster.
Truthfully, I've never been much of a fan of roller coasters... love the feel of the wind in my hair... but those sudden twists and jerky turns always leave my stomach queasy..... such is life... We were all set... Fly out on the 22. Had three appointments scheduled for the 23rd. 11 am- stress test , 1pm- meet to go over results, & 3pm- meet with the Cardiothoracic surgeon... Then fly home the 24th. Angel flight booked our flight for us again. Everything was planned....But then came the sudden twist ... this week we got a call that the Cardiothoracic Surgeon's vacation home burnt down, and he will be taking the week of the 22nd off to take care of the details. So now, we are waiting for a new appointment date. I should get confirmation on the date, hopefully Monday from the doctor's office.
When we do get up there they will do a stress test to see if Jake is a candidate for surgery. His pressure gradient has to be above 50mm Hg at rest or with physiological exercise to be a candidate. A test they did on Jake here in Holiday back on March 4th show a peak LVOT Gradient 59mm Hg at rest. Boston has more experienced personel doing the test , so I'll wait to see what their test says before I stress to much. What I do understand is that just because his septum thickness is massive doesn't necessarily mean he needs the surgery right away. It depends on if there is an obstruction. So now we wait... Have I mentioned before I am a planner... I'm not so good at waiting... and not knowing... it drives me crazy.
On a positive note... Today Jake had a few friends over to celebrate his birthday, which isn't actually until the 13th. Nothing to active... video games and movies, and he stayed awake the whole day. I know it seems silly, but I honestly think the last time he stayed awake the whole day, was in June for Jennifer birthday, but he was the first to sleep on the car ride home.
Jake and his buddies!
When we do get up there they will do a stress test to see if Jake is a candidate for surgery. His pressure gradient has to be above 50mm Hg at rest or with physiological exercise to be a candidate. A test they did on Jake here in Holiday back on March 4th show a peak LVOT Gradient 59mm Hg at rest. Boston has more experienced personel doing the test , so I'll wait to see what their test says before I stress to much. What I do understand is that just because his septum thickness is massive doesn't necessarily mean he needs the surgery right away. It depends on if there is an obstruction. So now we wait... Have I mentioned before I am a planner... I'm not so good at waiting... and not knowing... it drives me crazy.
On a positive note... Today Jake had a few friends over to celebrate his birthday, which isn't actually until the 13th. Nothing to active... video games and movies, and he stayed awake the whole day. I know it seems silly, but I honestly think the last time he stayed awake the whole day, was in June for Jennifer birthday, but he was the first to sleep on the car ride home.
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