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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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.