We are at the end of Day 27 of our stay in Children's. Wesley has done very well since he got the central line on Sunday 12/19. We have not received the official confirmation on what type of clotting disorder he has that caused the massive clot in his leg. He is on Lovenox shots now and will continue those after discharge. They should help break up any other recent blood clots caused by IV lines or surgery. Although we are still waiting for more information and answers about the clots, it appears they are under control at this point.
Wesley has been receiving TPN (total parenteral nutrition) through the central line for the past week. They put his Mic-key button back in on Wednesday to start feeds. They started with just a very small amount of Pedialyte through continuous feeds and continued to increase the amount each day. He was switched to a half strength formula over the weekend and is currently on his full calorie feeds. Once he was tolerating the full feeds, the doctors were able to stop the TPN, so he currently is not using the central line (after all he had to go through to get that line!!!). But that's a good thing, means he's closer to home. His feeds are currently running over 3 hours, and then he gets an hour off. We need him to take his feed over 1 hour for him to come home. Barring any unexpected set backs, he should be home this week... FINALLY!!!!
We did end up spending Christmas at Children's, but it was fun. Santa came to visit Wesley early in the morning and left presents for him and his brothers. The pictures below are from Christmas Eve and Christmas Day. It's nice to finally get some smiles from this sweet boy!!!
Christmas Eve:
Christmas Day:
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