New Years in Boston

We were being told that pending one final ECHO, Gage would be able to go home this week. Unfortunately, this morning we were told that the results of his ECHO were not looking good enough to go home. There was some concern that the valve may be having trouble with regurgitation due to possible infection of the endocardium tissue which could be affecting the artificial valve flaps.

More concerning however, was the fact that his left ventricular function seemed to be worse as well. Basically, the part of the heart responsible for pumping the blood out to the body was weak. This now has Gage staying for an indefinite period of time again. We're hoping that a change in some of his meds will help turn things around. His team has stopped the Sotalol and hopes to maybe see some improvement in function although we may see the SVT resurface.

For now Gage will settle for sharing his smile with the nurses and visitors at Boston Children's Hospital over New Years. Gage turns 7 months old on January 3rd.

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Closed Up

Today Gage had his chest closed.  His swelling had gone down enough that his chest could be closed without causing any trauma to his heart.  The swelling in his head continues to look better each day but his arms and legs still seem pretty puffy. They say he's still doing well however after the close up, it was reported that some of the pressure in his left atrium was slightly higher than desired. A possible result of the closure and a sign that things are still a little tight in the chest area from the swelling.

If the pressure fails to go down in the next couple of days it could mean that Gage's heart is still having trouble and that a replacement valve may be needed. While he's looking better each day, he is still in no condition for Gavin to see him. It seems like an eternity since we got to hold Mr. Gage and see his incredible smile.

To Boston

Tough morning watching Gage leave Rady Children's Hospital to catch his medical transport flight to Boston. Reality definitely set in as they moved Gage onto a gurney from his hospital crib. Reality it seemed not just for Kristy and I, but for the many members of the CVICU team who got to know Gage over the course of what has been nearly five months.  Gage was finally going to get his surgery.

The paramedics along with the CHET team wheeled him down to the ambulance and loaded him up. Mommy was allowed to travel with Gage and there was definitely comfort in knowing he'd have her at his side. Strapped to the gurney in a five-point harness, machines piled at his feet, and a "bink" in his mouth, they closed the doors and headed to the airport to catch a flight on a medical transport Learjet.

As I got in the car I wondered how Gage would do in the ambulance and whether or not he would get upset and initiate his SVT. Before Kristy and Gage took off from San Diego though, I received the photo below.

Scared? Not Gage. Smiling...  Of course!  At 1:45pm Kristy and Gage landed safely. The flight took approximately five hours and Gage had no problems on the way. They then drove about an hour to Boston Children's Hospital.