Monday, September 20, 2010

Funny Video!

This is a funny video that one of my high school friends posted on his facebook.
It's just a simple cartoon of a fictional transcript conversation between a Orthopedic doctor and an Anesthetist.  It is quite funny, especially if you understand that asystole (state of no cardiac activity - ie, heart not working).
It was definitely worth a giggle for me tonight!


Wednesday, September 15, 2010

Knowing or Not Knowing?

Some story telling, then the title will make sense.

In 2007 (after Jessica was born), she was seen at Andover Pediatrics.  Her doctor heard a heart murmur and said, "go see Alexis' cardiologist, make sure it's nothing."  We did, Alexis' cardiologist said "benign heart murmur we anticipate that it will go away by the time she's 2." 

In 2009, Jessica turned 2.  Heart murmur still there.  We didn't pursue it because the data that they explained to us about the original heart murmur that it may or may not close during the year she is 2.

In 2010, Jessica turned 3.  She still had her heart murmur.  Her pediatrician said "go see Alexis' cardiologist, make it's nothing."  (Keep in mind that Jessica turned 3 on July 2 - Alexis had just had her heart catheterization at Children's on June 22).  I had already mentioned it to Alexis' heart doctor that I thought we needed an appointment to follow up with Jessica.

On Sept 15 (today), we took Jessica to see Alexis' cardiologist.  After Matt and Jessica were in the ECHO for 1 hour, I knew that they had found something that was abnormal.  I couldn't patiently wait any longer.  I had to go be with them (unfortunately that meant I woke up sleeping peacefully Jessica).  Alexis and I supervised.

The doctor came to see us and give us the results fairly quickly - Jessica has an ASD murmur - the same heart defect that Alexis had repaired 3 months ago.   Jessica will need to have the exact heart catheterization procedure to fix the hole in her atrial septum (ASD).  The doctor recommends we wait another year - but also understands if we decide to get it repaired now.  We will probably wait until Jessica is a little bigger, a little stronger and a tougher little kid.  If her anatomy is different in anyway, there is a possibility that they won't be able to fix it during the heart catheterization - but instead we'd have to schedule another operation - for open heart surgery.  Obviously the recovery, hospital stay and impact on Jessica's active lifestyle is greatly reduced by a heart catheterization. 

So, now that we know what we know about Jessica's heart - is knowing better than not knowing?   Alexis and Jessica are precious sweet little girls that need a world of support. 

I know there are many of Alexis' friends out there with much more complicated heart conditions and my heart goes to each of them and their families.  But we just hadn't expected that Jessica had similar heart problems as Alexis.  But now we know.... and can prepare.

Thursday, September 2, 2010

Alexis - Hospital Update - Sleep Study

On Friday, Alexis had a repeat sleep study to see how well she is managing with her CPAP at night.
Alexis HATES sleep studies because they have to put EEG leads on her head and it smells bad, takes time away from sleeping and makes her very grumpy.  And for people that know Alexis, the worst thing you can do is to disrupt her sleep.  So, this video is made by a mean mommy who had to help her endure the process.  At about 50 seconds, she stops her crying and gives me the STARE DOWN to inform me that she did not appreciate this process one bit.  I hope when she's a lot older she'll forgive us for all that we've done to her to help her stay alive.

Please don't be angry at me for posting Alexis so sad, but I wanted folks to see an example of what she endures....

Flying - A Tale of Two Sisters

So, while we were in Lake Placid we took a small airplane ride.  It was a scenic ride through the mountains of Lake Placid.  Well, in the following video you can see ALEXIS having a great time - a big smile and lots of giggles, and then you will see Jessica with no so much interest in the flying.  She is concentrated instead on rolling her seat belt and keeping down her breakfast.  Matt and Alexis had a great time.  Jessica and I tried not to turn green.  It was great fun, just very funny to see the reactions of our two daughters.

The Summer Trip to Lake Placid (Aug 2010)

Jessica, Matt and Alexis at Fort Ticonderoga, NY
Jessica and Catherine dressing up in clothes at Fort Ticonderoga. 
Alexis, Matthew and Jessica dressing up quickly (attention spans had waned) at Fort Ticonderoga.
Jessica, Matt and Alexis in an Olympic Bobsled at Lake Placid.  Matt and Catherine actually went down the track in a bobsled -- an awesome fun time!
Matt and Jessica in the Olympic Bobsled Combined Track in Lake Placid.  We got to walk down from the top!  A fun walk, and we didn't let Alexis stroller go :) 
Jessica, Alexis and Matthew waiting patiently for Boat Ride on Lake Placid.  Please OBSERVE how grown up Alexis is sitting and how attentive she is to the camera!!!  Very Awesome!!!
A very windy Boat Ride......
After boats, then PLANES.  A little plane, for a scenic ride above Lake Placid.  For me, a lot better than hiking.  And we were able to see a lot of mountain tops (and hikers).
Alexis had AN AWESOME TIME.  Next post will be the video from the ride!
Then a smaller boat, kind of cold day, and Alexis was SLEEPING on this boat ride.  She was very calm and Dad paddled very well, even though Alexis wasn't a good counterweight to Dad.  I guess Dad will lose a few pounds or Alexis will gain a few pounds.
Some sort of Falls in NY that I forget the name.  Catherine and Jessica being cute at the beginning of the hike.
Matt and Alexis.  Alexis is thinking, "Dad why are we stopped, you know I like for you to walk."
Alexis, Dad and Jessica - trying to prevent Jessica from falling in the river.  A very fun walk!
Jessica was doodling herself to sleep.  She slept the whole ride home from Lake Champlain in Burlington, VT to Methuen, MA.