We had a lovely time celebrating Christmas in Lafayette! Julianne even had her first putt-putt experience. I will definitely give a good christmas update, complete with pictures, soon.
Yesterday we were basically just passing through Zachary/Baton Rouge for Kent to lead the worship at church and then were heading back home. During church and after Julianne just didn't really seem like herself. She was fussy, tired and breathing heavy off and on. We decided to head over to my grandparents' house, as we'd planned, and I'd check her pulse ox in the car. Julianne's pulse ox was fine, but her heart rate was in the 180's and staying there. I, of course, called her doctor. His recommendation was to bring her either to New Orleans to Ochsner's ER or the Our Lady of the Lake ER. After going back and forth with ourselves about which one to do, we decided to go to Our Lady of the Lake (OLOL) in Baton Rouge. As it turned out it was a good decision. When we got to the OLOL ER Julianne's heart rate was still in the 180's but her saturations were now in the 60's. So, they immediately took her back, got the monitors on her and after a few tries, got an IV in and blood drawn. She was put on oxygen and they did an EKG. The Baton Rouge Cardiologist and New Orleans Cardiologist agreed it looked like SVT...not an elevated heart rate from a fever or whatever. They faxed the EKG to Boston and they agreed that it looked like SVT as well. So, she was moved up to the PICU where she was converted back to a normal heart rate after 3 doses of Adenosine. She's stayed in normal, sinus rhythm with a normal heart rate all through the night and all day today.
Dr. Crapanzano here in Baton Rouge has been in contact with Boston last night and this morning and the plan of action now is to put her back on Amiodorone. She was taken off of Amiodorone in July and put on Propranolol because of a higher than normal TSH level...this is a hormone produced by the thyroid. The thought now is that its worth medicating the thyroid issue if Amiodorone is what keeps her from going into SVT. Obviously Propranolol wasn't working. There's still a chance that Julianne will end up needing intervention through a cath to "fix" what's causing all this. That would need to happen if she doesn't do well on the Amiodorone. Since she's done well on Amiodorone before, she will probably do well on it now. If she does need a cath, Dr. Breitbart (Boston Card.) would like to postpone it until at least April. At that point she'd have it as her pre-fontan cath and and have her fontan early (that's my understanding, at least). We still need firm details, but as of right now, she'll get a loading dose of amiodorone for the next 3 days then start oral dosage then be discharged. So, we'll hang out in the PICU of OLOL until then.
I'm very thankful that we noticed something was not right. I'd just checked her pulse-ox the night before (we don't check it very often anymore) and everything was normal, so it must've changed overnight or in the morning. We thank God for protecting our baby girl! Please keep her in your prayers as we work with doctors in figuring out the right treatment for Julianne.