Wednesday, December 31, 2008

New Year's Eve and Doing Well on Amiodorone

Well, as the title states, Julianne is doing well on the Amiodorone.  We expect that she'll be discharged tomorrow.  Yay! 

Julianne has had quite the hate-hate relationship with IV's.  On Monday night the IV she'd gotten in the ER went bad.  Poor thing...she was having trouble going to sleep and kept messing with the IV site so I asked the nurse to check it and she said it looked fine.  Later, when she still couldn't sleep the nurse checked it again by un-taping most of it and sure enough, her poor little hand was swollen to almost twice its size. :(  No wonder she couldn't sleep...then of course that started the whole putting in a new IV nightmare.  It seems that all of these kiddos are difficult sticks and Julianne is no different.  There's just nothing left to put an IV in.  They finally got one in after much effort only to have it blow less than 8 hours later.  After that, and 3 more tries for a new IV (its heartbreaking to watch) we got the ok to giving the Amiodorone orally,  or, in Julianne's case, via g-tube.  Now that Julianne can talk its even harder on us to watch her go through this stuff.  She says, "No, no, no!!" "Mommy/Daddy...hold you! Hold you!" "Come on!" (Julianne's word for "come here").  Ugh...brutal...but over now.   I am trying hard not to think about what it'll be like when we go back for the Fontan. 

She'll continue on the loading dose of Amiodorone until Thursday of next week and then she'll be on the regular dose.  So far, she's had no SVT episodes since that one Suday night.  For that, we're extremely thankful.  If you remember Julianne was on Amiodorone before, but had elevated TSH levels so she was taken off of it.  This time, we will medicate the thyroid issues, if they happen again, rather than take her off of Amiodorone. 

Julianne has her first clinic visit with the Baton Rouge cardiologists next thursday.  We decided to go ahead and transfer her care to Baton Rouge now since we'll be moving here anyway and she's already had quite the introduction. 

We are more than ready to head home.  Its been a long time since she's been in the hospital...about 8 months, actually.  Julianne is quite a different person now than she was back then.  She's much more wary of strangers/nurses/doctors, much more active, and much less content just haning out in a crib or on laps.  While she doesn't want the nurses/doctors, etc. touching her, she's more than happy to entertain them if they stay a few feet away.  Such a little entertainer, this girl.

That's all there is to tell on this Eve of the new year.  I hope you all celebrate safely and that 2009 is all that you hope for and more. We have appreciated all of our visitors and thank you for all of your prayers.  We are truly blessed to have so many people who care about Julianne and about us.  The beginning of 2008 was a bit of a roller coaster ride, so I think its appropriate that the year ended with one last loop-dee-loop.  As up and down as our life is sometimes, God is always constant and always faithful and has blessed us with far more than we could ever deserve!

Happy New Year, everyone!!
Love, Kent, Jessica & Julianne

7 comments:

Anonymous said...

Great news for your cutie little girl. I know you must be anxious to get back home and back to your regular routine. Hope your move to Zachary will come soon. Kent, keep looking for that perfect job! Love you all.

Anonymous said...

Julianne is blessed with such sweet and attentive parents. She won't remember any of this but I know you two will. All my love and wishes for a peaceful and healthy new year.

Aunt Sarah

Rachel said...

Good news...hope you get home soon.

Happy New Year to you guys too!

Allison said...

Wow, what an ordeal. I think IV's are the worst part of the whole hospital experience, so I totally feel for you. So glad that things are going better & you'll be home before too long!

Anonymous said...

We are happy to hear she is doing better and pray that it stays that way for "all of you".
Love Aunt Naomi

Anonymous said...

We are praying a great New Year for everyone!!!!!

Glad to see she's doing better. We'll see you soon.

Luv
A. Stac

Anonymous said...

I am glad our littlest angel is doing better.

You all are such good parents and I pray that God continues to protect Julianne through this new year and all the years to come.

It is so good to see her personality come through more and more.

God bless you all in this new year.

Love Aunt Suzette