Wednesday, August 26, 2015

There are 6 weeks between a rock and a hard place

We've been discussing more immediate treatment options for awhile now, and are still playing the waiting game for one major reason: how recent his last surgery was. The Fontan requires about 6 weeks of recovery (only a week of which is usually in the hospital!) and our doctors were adamant that signing him up for another surgery before the 6-week mark is absolutely to be avoided... especially since all surgical options are "shots in the dark", bringing about new risks with at best a 50/50 chance of success.

As of yesterday, it's been 6 weeks.

This is the soonest they would even consider cutting into him again, and even then... no one is eager to rush into the OR again. So we'll keep waiting, but the next-level, more intensive options are unfortunately officially on the table now. His fluid output had decreased over the last month but has jumped back up significantly again recently, so the chance of needing another intervention is looking higher than ever.

James' general demeanor is improving though as he gets used to the ICU and gradually accepts his new routines. We have finally accepted that he won't be home and starting school on time, so we're making plans to give him preschool lessons in the ICU, bring more of his activities to him, take him outside more often, and make the coming weeks or more feel as normal and fun as possible.






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