ECMO

The infection in Gage's blood has caused his health to decline so much so that they have now put him on the ECMO machine. It is responsible for doing the work of his heart and lungs by taking the blood from his body and resupplying the necessary oxygen while removing the CO2 waste from his cells. His time on ECMO is limited to only a few weeks from what we were told.

The goal is to help him overcome the limitations of his heart and lungs due to the infection and essentially stabilize while doctors try to come up with a way to beat his infection. As he begins to overcome his infection, his doctors have agreed that he will need to go back in for a valve replacement. I truly believe he may have had a chance at recovering well enough with his valve repair but it seems that this infection has taken that chance from him.

They haven't yet stated whether he'll receive the Melody Valve or not. For now, the focus is on beating this bacterial infection identified as Stenotrophomonas Maltophilia. His latest blood tests seem to have finally come up negative however it has only been about 24 hours. They continue to test his blood regularly. We hope and pray that we no longer see positive lab results.

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Up and Down

Gage continues to have his ups and downs. It seems like every time they back off of the sedation meds and reduce the respirator support, Gage begins to show signs of failure within the first few hours.  So much so that he requires more sedation and lung support. Yesterday they discovered that Gage has some kind of infection.  This is something that seems to be partially responsible for the elevated body temperature and heart rate that Gage has been experiencing over the last several days that had me very concerned.

They had to cool him with cold cloths on his head and legs in order to try and break his fever. This evening just after we left, he had another weak moment that caused his temperature and heart rate to increase.  The cooling blanket was used this time to help bring his temperature back down. We haven't heard exactly what kind of infection he has yet since the lab tests aren't complete. They had already given him one type of antibiotic less than 24 hours ago. Now they've switched antibiotics to something that will better target his infection. His cardiologist says that Gage's echo results and his rate of recovery are signs that Gage's will likely need a replacement valve next week. We continue to wait.

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.