Change of Plans

Tuesday morning we awoke feeling good. Declan was going to have his catheter and we'd finally have some answers. Then walked in a doctor around 8:30 or so, "We've had an emergency with another infant that was life threatening and needed a catheter" As a result, that baby got the catheter slot and we were in a waiting pattern to see if Declan would still get one Tuesday.  We waited and waited and a few hours later they popped in, "well, we hope to get you in today"  Meanwhile, Declan hadn't ate since midnight and we wanted to get him some food if he wasn't going to get in.

Then we received a surprise visit from the surgeon.  "Looks like you will not get the catheter today, but we'll get you in tomorrow (Wednesday) and we will do the "Glenn" surgery on Thursday." Tammy and I just looked at each other, stunned. We were completely caught off guard. By the most recent doctor accounts, it was going to be pushed down the road. But I think as they have been watching Declan desaturate so often, they new it was time. His size is also good for his condition and age as well.  At least we had a plan! That has been the hardest part about this whole thing - waiting and watching and hoping decisions can be made.

The other hard part is watching Declan's pain. He threw up his feeding tube a few more times yesterday and had to be inserted and his IV came out so they had to "probe" around to find the vein to replace it. Anytime this happens he screams at the top of his lungs, starts desaturating, and turns blue. So between his color and the noise of the monitors alarming, mixed with his blood curling screams, we can barely stay in the room as it's done. Luckily he is happy and calm otherwise - definitely a trooper!

So we'll keep you keep you updated but his catheter is scheduled for around 1pm or so. . .