Thursday, June 17, 2010

Trying Something New

After consulting with Boston, Dr. Crapanzano has started Julianne on a drug called Verapamil. It is a "calcium channel blocker" if anyone wants to know. Lisa (Dr. Crapanzano's PA) said they have some kids in their practice on Verapamil but not for arrhythmia control. However, Julianne's Electrophysiology doctor in Boston does use it for that purpose. Its relatively safe with few side effects...MUCH fewer and less serious side effects than our frenemy Amiodarone can cause. If Julianne could get on Verapamil and get off Amiodarone we would be pretty excited! I'm not one to count my chickens before they hatch (and even after they hatch I sometimes wait a few days) so we'll have to wait and see if she has any break through SVT. There's some room to up the dosage if needed and for now, the plan is that if she breaks through they'll up it. Julianne got her last dose of Amiodarone this morning. Now we'll just wait to see what happens with the new drug.

Julianne is having some real trouble with her feedings. We're not sure what's going on, but we had to use a pump to feed her over the course of an hour tonight. We haven't had to do that in probably a year and a half. There is some concern that her Nissen Fundoplication is no longer intact. Our fear is that the "possible" pneumonia (Oh yeah, now its just "possible". Its unclear whether or not its a true pneumonia, but they're treating it like one with antibiotics) may have been caused by aspiration of vomit that her Nissen allowed to get by. We have a consult with Dr. Hansborough (Julianne's surgeon) tomorrow. I'm not a big fan of more testing...really...not at all, but aspiration is a serious thing and we want to make sure Julianne is safe. If that means more testing (even though it might show us nothing) then we'll do it as long as its of possible benefit to Julianne and we'll pray that the results will be totally clear. Please pray that the source of her increased difficulty in feeding will be discovered and that any testing will clearly show whether or not the Nissen is intact.

It looks like we're hanging out here until at least Saturday. We've enjoyed our visitors who have stopped by in the last few days. Julianne has enjoyed Mickey Mouse and bubbles. This PICU room has the most comfortable hospital pull out bed I've ever slept in. It pulls out to a full size bed. I give it an 8. :) I do not have my camera with me. :( And I keep forgetting to ask Kent or my mom to bring it. So, I've only got one pic today...from my phone:

Have a great weekend! Thank you as always for all of your encouragement and prayers!


Anonymous said...

Omg she is so so strong. What a trouper she is. We love her so much and hope she gets over this setback soon!
Please tell her Cookoo bird Aunt Omi sends her kisses.
Love you and praying for u all.
Aunt Omi

Anonymous said...

Praying for wisdom for the doctors and definitive test results. Praying for all of you & that y'all will be back home soon!
Erin C.

Anonymous said...

This road y'all are on is amazing! May God bless y'all!!




We are all praying for Julianne! I hope that she gets better soon. Than you so much for keeping us updated on what's going on!

Anonymous said...

As always I'll be thinking about you guys and hoping for the best!! I'm glad you're getting to sleep on a nice bed!! Julianne is so lucky to have such dedicated, and loving parents!! You guys amaze me!
Love y'all!

Anonymous said...

Praying in SC for our sweet Julianne.
Hoping great things will happen for you all this weekend.

Love, Jan Tompkins