Monday, October 15, 2007

Cardiology Appointment

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.


Our Family said...

I just found out we are joining you on the Synagis bandwagon again this year as well!


Valerie said...

You should have Dr. Parrish send the info to Dr. Mainwaring also, chances are, if Stanford did it, it will be Dr. Mainwaring, so why go out of town?


rose said...

wow-that is a lot to think about. all i can say is, drew has the best mommy for him and he is a lucky boy to have you! you're amazing and inspiring and i'm blessed to know you!
love ya sis!

Awesome Mom said...

We are Synagis free this winter. I am so happy but I am also glad that it is there to help the kids. Good luck with the cath.

Kacie said...

wowie...dec 12, huh? we are ready to rally around you guys over the coming months for support and prayer. good for you for advocating for your son and your family once again. i agree with are the best mommy in the world for Drew!!

Quayle Covey Blog said...

My brain hurts just thinking about all that. No wonder you get anxious! Thank God for little blessings like getting appointments before Christmas. :)

the bright kate light said...

good job mamacita! love you!

Jessica said...

I think every mom with little kids, heart healthy or not, who goes to umpteen doctors appointments and or has been through even ONE hospitalization with a sick baby and pays attention to what the doctors are doing has absorbed enough medical knowledge to qualify as at the very least a nursing assistant.
You, Andrea, you could be on House. You could BE House!
Cutting the chances of Drew getting RSV is totally worth two shots a month. RSV is the pits. I learned that during my two hospital stays with little babies with RSV! :)

Molly said...

Drew is very lucky to have such a wonderful Mommy for an advocate. Dec. 12th seems so soon to me, so I can imagine how it must feel for you! Lots of prayers and support coming your way!