Tim's Variety Plate: Day of Rest, Take 3

June 19, 2010

Day of Rest, Take 3

We got an early start today to sit in on morning rounds, but of course since it is Saturday the doctors got a later start on their rounds. After our stressful afternoon the rest of the evening and overnight were uneventful. Nothing of any particular interst was found in the CT scan overnight, which is good news too. Today's plan is to finally have a day with no episodes and really let Tim rest and heal. The doctors are adjusting his medications to assist with this while still getting him ready to come off the vent in the next day or two. Hopefully no new news for the rest of the day as we try and get a jump on sleep that's sure to be lost once Tim is awake and getting active.

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About Tim's Heart

Tim suffered from a rare heart condition in which the lower half of his heart operates in reverse. Instead of the stronger half of his heart pumping blood to his body, it is serving his lungs. And the weaker half is working in overdrive to pump blood to his body. Tim also was born with other heart defects. A hole in his heart was repaired when he was just 5 months old. During that same surgery, a pacemaker was installed to remedy an irregular heartbeat.

Over the next 2 years, Tim had 3 surgeries to prepare him for the complicated "Double Switch" procedure. This complicated surgery disconnects major blood vessels from the heart chambers they are currently attached to and reconnects them to the correct chambers. Tim underwent this procedure in June, 2010. While the surgery successfully reconfigured the vessels, his heart did not recover fully and he was in heart failure.

On June 20, 2012 Tim received a heart transplant after nearly a month of hospitalization as a result of a cardiac event that happened on May 30. Since transplant Tim has recovered well, with no signs of rejection to date. He is currently awaiting discharge from the hospital.

Despite his diagnosis, Tim has always lived a very full and relatively normal life for a 5 year old boy. We will continue keep in close contact with his cardiology team, and he is on several medications daily to prevent rejection of his new heart. While our family has gotten past a significant hurdle there is still the possibility of additional surgery or hospitalizations in Tim's future. Regardless, we have always focused on making the most of the day to day and try to enjoy the simple things the best we can.