Sorry this post is a little late. Lillian had her sedated ECHO last week, something we had been trying for almost two weeks to get. The results of this are good; her aortic arch is wide open and there's no sign of the blockage returning. We do see that the SANO shunt is narrowing, showing that Lillian is outgrowing it. At some point it might get too narrow; in that situation we could either do a cath to balloon it or do another surgery to replace it entirely with a bigger one. Obviously we would probably do the cath option first.
Other than the ECHO it was a relatively quiet week. Lillian is continuing to fight eating, and is down to at most 20 to 40 mL by mouth a day. The rest we have to gravity bolus. It's disappointing to lose ground on this as this was one of our target areas to work on while waiting for transplant, but at least Lillian is still relatively stable.
The wait continues...
Great news about the ECHO results and the aortic arch! Too bad she cant have some fun foods like peaches or cheerios; maybe she's bored with the baby food! This is my FAVORITE picture of her; well, one of them. I just love this pose; I want to push the non-existent PLAY icon to hear her sputtering and cooing. Grandma loves you, Lillian!
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