Monday, December 29, 2008

I thought this would be a Christmas update...

...but, as it turns out, the update is more about yesterday and today's events.

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.
She's always such a happy girl (pic from my phone)

10 comments:

Elysmom said...

Thank God you guys caught it!!!

Hugs,
Cristina & Elyse

Jen Steele said...

Hang in there, Mom & Dad. This too shall pass. And then you can go back to sour cream eating and baby proofing for crawling to come.

Anonymous said...

We're sorry to hear she had some issues, but we're glad that they're resolving them. We will definitely keep our cutie pie in our thoughts and prayers. We'll see you soon!!

Luv

A. Stac

Anonymous said...

We are in prayer for all of you. She is so strong and so are her parents. We love you.
Aunt Naomi

Jason, Denyse, Hannah and Baby E2 said...

There is nothing like a mother's intuition! I am so sorry that you are having to deal with this when things have been going so well. However, I am thankful that God gave you such great instincts and that Julianne is now safe.

Jason will come by tomorrow and visit you while he is at work. If you happen to get Helen for a nurse tell her we are friends. Her husband works with Jason.

We'll be praying for all of you!

Anonymous said...

the new pic is really nice to see. looking forward to the next update.

jen

Anonymous said...

Jessica and Kent you two are wonderful parents. God certainly placed Julianne in a good family. We are so glad that you all caught the change in her so quickly.

We will pray that today Julianne will be back to normal and be able to go home soon.

Love and Kisses
Great Aunt Sarah and Suzette

The Butcher Family said...

Whew...Jessica, you did a great job of explaining that one. We are so glad that the meds are helping...I have little faith in propanolol (it didn't work for Annabelle either so she was on sotalol).
Praying extra prayers for Julianne and for a healthy, happy and wonderful 2009!
Love y'all~ Rebecca

Lindsay Dean said...

We are praying for you baby girl! AND I'm digging the leggings!! Love to you all!
Suzie and Lindsay!

Anonymous said...

Glad that Julianne is doing well now. We think about you guys all the time and love checking the blog. Hope things continue to go well. We will miss seeing you guys here at Ochsner so please keep in touch.

Stephanie and Roxanne and all the peds nurses!