How Many Parents Order *THIS* for Their 3 Year Old?

Graysen is obsessed with Obama, so Lee ordered a special present for him.

Another Good TGA Surgery Video

Heart Education--Transposition

Graysen has a cardiology/echocardiogram appointment tomorrow morning. So, I have had TGA-PA on the brain all morning.

I was inspired by other heart blogs to see if I could find educational videos on TGA-PA, specifically from Children's Hospital of Philadelphia (CHOP) which has videos on different types of Congenital Heart defects.

I found a six video series on TGA by CHOP. It is a great series and helps explain TGA in a simple way.

Part 1: I did not post because Gray does not have simple TGA.

Part 2: Good description of a "normal" heart and fetal circulation.

Fetal circulation allowed Graysen to be "safe" as long as he was in the womb. Doctors kept him alive for nine days after birth by using a drug called prostaglandin which forced the ductus arterious to stay open when it would have closed within 24-48 hours.

http://youtu.be/FVDvrUL7LgQ

Part 3: Good description of TGA. Gray's "mixing" occurred at the ductus and VSD.

http://youtu.be/D58eufx-_4Q

Part 4: Stabilization after delivery.

This video explains why babies are not rushed to the OR upon birth. Doctors take a few days to fully diagnose the defect and stabilize the baby.

http://youtu.be/0Ka9OJAGgJo

Part 5: Arterial Switch surgery. This is the preferred method of "fixing" TGA. Unfortunately, Graysen was not a candidate for this surgery because he didn't have a pulmonary artery. You can't "flip-flop" something that is not there. Instead, he received a more complicated and rare surgery called the Rastelli Procedure.

The aorta is not moved in the Rastelli Procedure. It is left in the "wrong" spot. The VSD is closed in a manner (using pericardium) that cuts the right ventrical in two, adding part of it to the "left" ventricle while encompassing the un-moved aorta.

Thus, the "left" ventricle becomes roughly 1 1/2 sizes and the "right" ventricle roughly 1/2 size. Doctors use a Contegra bovine conduit (jugular vein from a dead cow) as a pulmonary artery and it is sewn onto the bottom of the "right" ventricle.

Graysen's heart is never "fixed." It does not look like a normal heart but functionally does the same thing.

Graysen's "Rastelli" surgery took over six hours and is not comparable to the Arterial Switch procedure. I shared this video because it discusses some of the complexities of heart surgery. There is very little information about the Rastelli procedure on the internet because it is rare.

http://youtu.be/sqfMNwEagWw

Part 6: Life expectations.

A lot is unknown since these babies are just now getting to be adults. Graysen will need further intervention because his bovine conduit does not grow as he grows and will need to be cleaned out and replaced periodically.

http://youtu.be/Z-2xZPY0wN8

Now you are all experts on Graysen's condition! You can also see why Graysen is exceeding all medical expectations.

Graysen is incredibly strong and I am expecting a good report tomorrow at the doctor's office.

A Behind the Scenes Exclusive!

This is pretty much how the picture-taking goes for each and every one of the photos on this blog. (In Laura's defense, she was using a new camera, and it is a little slow.)

The video is from our visit to the U.S. Capitol Building.

On Our Way Home

We are on our way home and will arrive back in Spartanburg tomorrow. We are taking the scenic way home through the Shenandoah Valley. We had a great lunch at Apple House and are spending the evening in Roanoke, VA. It has been a great trip!

Smithsonian Air & Space Museum

Yesterday we went to the Smithsonian Air & Space Museum and spent the day looking at A LOT of airplanes! The Udvar-Hazy Center is new and is located by the Dulles airport. It has an observation tower where you can watch the four active runways and listen to the air traffic control communications between the tower and the pilots. This museum was right up the boys', and Lee's, alley.

Everyone picked their favorite plane. I was interested in hearing the detailed story of the Enola Gay, which is the B-29 bomber that dropped the nuclear bomb on Hiroshima.
Graysen did not like Auntie riding in his stroller.
Lee's favorite plane was the SR-71 Blackbird. (Note: As I am typing this, and asked him what the name of the plane was, he insisted that he never said that this was his favorite plane. OK. But, I observed that he seemed to really enjoy seeing this plane.)
All of us really enjoyed seeing the Space Shuttle, or Space Ship as Erica says, Enterprise. Caleb was VERY excited!
I love my little boy. :)
The shuttle is REALLY big!

How We "Roll"

Caleb with his DC guide book that Auntie mailed to him prior to the trip.
Caleb in the "power lounger."
Kevin was never far from his camel pak and the 3L of water inside of it.

He spent the night prior making a "perfect batch of water." He filled the pack with ice and water and then put it overnight in the fridge to chill. He was not very happy when Capital security made him dump his entire container of "perfect water" onto the lawn because it was not allowed into the building.

This left the rest of us standing around an atrium at the Museum of the American Indian waiting for Kevin while he searched for the best water fountain option to refill his pak. He did not accept Erica's suggestion of using the fountain on the first floor and instead opted for a water fountain on another floor! He would probably not have made this choice if he consulted with Lee prior to his water search because Lee, who is a water expert, informed him that the best water fountains are the ones which are used frequently and have less bacteria. Thus, the best option would have been the original fountain that Erica suggested at the entrance, not the less-used one on a random floor.