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Liz Stokes

Twas the night before…

Transplant decision and all through the CICU not a creature was stirring except this mom and dad who can’t seem to rest. As of 11:31p on 1/21 there are no changes to Carter’s heart. The team will be presenting Carter’s case to the transplant team tomorrow morning at 6:30a. Dr. Bryant may or may not test Carter’s heart later in the day for function depending on how he likes the CICU team’s report.

The next step is to pray that the transplant team accepts Carter’s case and we can move forward. I guess. I’m not really all that sure what to pray for. God knows my heart.

We spent many hours today loving on Carter and singing him songs. We played all the songs to him from his Facebook page and once again Rob pulled me out of the ICU. Honestly I had to return some things– like 6 outfits from the Disney store that Carter should be wearing right now and a pair of jeans that were too big.

When we returned Carter had listened to Moana and Tangled so we kept things going with Frozen, Sing!, and now Finding Dory.

Carter’s chest tubes finally let the flood gates run and he dropped 60mls in a matter of seconds. The team was thrilled that they’ve managed to start working again and no intervention is needed. We just got labs back and our little vampire needs more blood which is not surprising considering the amount he just emptied from his chest.

There was an echo performed yesterday- the findings are currently a mystery and will be further evaluated on Monday by Carter’s surgeon. There could be a clot near his mitral valve in the left ventricle but it could also be a shadow. The team including the echo fellow determined it to be unknown but worthy of further investigation.

Carter had a head ultrasound yesterday which confirmed that he’s still Carter. His spirit is very much inside him and thriving. All his other organs are continuing to work excellent too. We’re just waiting for his heart to wake up. The team has zero explanation as to why it’s not waking up but all their past research shows that if by day 5 (Monday) nothing has happened the likelyhood of anything happening is minimal (less than 1%). So we need to begin exploring other options and finding a proper device to switch Carter over to that isn’t ECMO. Longterm ECMO exposure is very dangerous and we don’t want to harm Carter PLUS this institution will not do a transplant from ECMO to new heart. The chances of a successful transplant are minimal if we take that route.

All things considered we have a very long and dangerous road ahead of us.

So to brighten the gloomy mood here are some shots of Carter and Daddy.


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