Drew had a cardiology appointment today. I arrived in the office with my list of questions ready for the doctor. Dr. Parrish noticed as soon as he walked in and said "why don't you start asking me now (he was washing his hands) so I can start thinking." He's so cute. So I rattled off my list of "can Drew take this cold medicine, can he take airborne when he's getting sick, can you refill our lisinopril, what should his medical alert bracelet say, and don't you think a repair would be better than the Fontan?" His answers were maybe, yes, yes, ask Celia, and yes. So we talked about sending the results of his next cath to Stanford, as well as UCSF and the surgeon at UCD. If it is possible for Drew to have a two-ventricle repair, that is what we want for him.
At our last appointment we talked about scheduling the cath for early January. I asked Dr. Parrish if we could do it before Christmas so I am not filled with anxiety during the holidays. He said he would let UCSF know that we wanted to do it earlier and they would schedule it. A few hours later I got a phone call from them and we have scheduled the heart cath for December 12.
Other news? We increased Drew's sildenafil dose to 4 mL, three times a day (that's tid for all you medical types). We also learned that Drew will be getting his Synagis shots again this year. Unfortunately, that means shots every month from November through March. And he's big enough now to require a shot in each leg every time. It used to be recommended for heart kids under 2, but they have found that kids with pulmonary hypertension who are under 4 can get just as sick from RSV as kids under 2. I almost said no thank you, but he's in preschool now and will be exposed to lots of sick kids. And kids who get RSV really bad end up on the ventilator and we don't want that. Especially with surgery in the spring. So I reluctantly agreed.
I also asked the nurse about setting up a parent evening like the one we just had at Sutter. And about providing information to parents with a new diagnosis on the kind of support and resources that are available. She basically said that sounds great if you are willing to do it. Hmm...I would totally be willing to do that, but I don't know if it's the best timing with two young kids and heart surgery just around the corner. But it is something to think about.