We started feeding him again this weekend and so far he is doing great! He is setting the pace these first two days, so we let him take whatever he wants from the bottle. He is ranging from 10-30mils per feeding which is great for reintroducing food. He is only getting skimmed breast milk right now since he is still on the TPN. Monday we will start adding the enfaport low fat formula back into his diet. We won't be able to tell the results of his effusion until midweek. We are praying that the effusion stays away and that these two weeks of no feeds have given his body time to heal and create new pathways for the fluids.
We learned this week that the reason for the chylous effusions right now is no longer from the surgery but from the location of his SVC clot. The clot is sitting right where the thoracic duct dumps, so the fluid really needs to re rout itself some other way. Right now, it is just overflowing into the pleural space. Over time, his body should adapt and create new pathways for the fluid. The doctors are hoping that this was happening during the past two weeks while the chest was dry. We had been under the impression that this effusion was just a result of a nick during the surgery, but it is actually because of his clot.
Keep praying that his effusion stays away this week. We are ready to bring him home for good.
Tyler and Daddy
Mommy and Connor at the Museum
Getting Ready for a Walk
Hang in there you guys! Sounds like Tyler is making great progress. I can't say it enough - You will get through this. And you will have two awesome boys to play with and yell at and be driven crazy by for another 18-25 years. These past few months will be a distant memory before you know it. I promise. I remember Gabriel's 7 weeks in the NICU after he was born, but just pieces of it now. I remember the sweet, quiet, peaceful moments, and not the panic sessions with equipment screaming. And now he's 9 and tough as a tank, so, just think of that. You have hundreds of folks praying and sending you healing and health - love you all!
ReplyDeleteThat's great that you got to go to the museum, Julie! I've heard such good things about the Indy Children's Museum! Thanks for your updates, and I'm glad things are going well this week :)
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