Once we finally got going last week, I think the kids had a nice Spring Break. We went to Galveston for a long weekend. Not my favorite Texas beach, but it was nice to get away. Plus, I had to take Colman to Houston on Friday for his cardiology checkup so it was convenient, which totally makes up for the fact that the Gulf of Mexico was exactly the same color as chocolate milk.
The appointment went well. Colman’s heart looks unchanged, so we are moving forward with the Sildenafil wean in spite of the fact that Colman has started doing this breathing thing where he sort of gasps. It freaked me out at first, but I think it’s just a tic he’s picked up. Like, seriously, kid? Why couldn’t you have just started snapping your fingers or clearing your throat? But, no, it has to be his breathing, and that’s totally unsettling when you’ve got a kid with a major heart problem and a medical history of complicated lung issues that are not well understood.
Our next appointment at TCH will be for a heart cath sometime in June to check Colman’s pulmonary pressures. I hate that he has to go back into the cath lab, but it’s the only way to check lung pressures in a child who has a single ventricle. The results of the heart cath will determine whether Colman can stay off the Sildenafil or if he’ll have to go back on that medication indefinitely.
And, that, my friends, is the Spring Break wrap-up!
Crazy Heart Mama 