Tuesday, May 18, 2010

A Very Long Day

Well, today has been a very long day. We had to be at the hospital for Julianne's pre-cath work-up at 7:30 AM. She had a chest x-ray, labs, echo, ekg, met with Anesthesia, EP, Cardiology, Neurology, Hematology, study doctors and the Cath-lab doctor! We were able to take a break for lunch and let Julianne have a 45 minute nap, but then headed back to the hospital and didn't finish appointments until 5:30. Our poor baby boo was worn out! She was oh-so-very-done with it all! We came back to the DNH. Julianne had her bath and dinner and then got to visit with Grandpa and Grammie for little while before heading off to bed.

Julianne's brain MRI that was scheduled for tomorrow has been canceled. Julianne has a permanent pacing wire which Dr. Pigula put in during her Glenn with the thought that she might have needed a pacemaker between then and now and having that wire would prevent them from having to open her chest again. Anyway...that wire makes the MRI more risky. For Julianne's situation the risk outweighed the benefit and the MRI was canceled. I am not disappointed about that in the slightest. :)

The cath is tomorrow. We arrive at the hospital at 7:00 AM. Julianne will be asleep before we leave her side. Hearing that was a HUGE relief for me. I was envisioning having to leave her scared and crying. Thankfully, that won't be the case. I tried to get an estimate of how long the cath is going to be and all I could get was, "very long." Apparently the EP study makes it a lot longer. What's a EP study? I'll tell you... An EP study or Electrophysiology Study is when they try to "stir up" Julianne's arrhythmia and, if they're able to precisely locate its pathway, they ablate it by either "zapping" it or freezing it. This is known as an ablation. They've told us they are going to be VERY cautious with the ablation tomorrow. Using the zapping option, there is very little room for error and an error could mean she'd need a pacemaker. A pacemaker would put a lot of strain on her one ventricle. So, they're going to go the freezing route. He said they've got about a 50/50 chance of ablating the pathway. If they aren't able to ablate it then we'll figure out what the next step will be later. Other than the possible ablation, they will be coiling any collaterals that need coiling and checking pressures and sizes of her aortic arch, pulmonary arteries, etc and ballooning or stenting anything that needs it. Depending on what is done in the cath lab, Julianne may or may not get out of the hospital on Thursday. Even if she does get out, we'll be back on Friday for surgery.

Like I said...a long day.

You're not going to believe this, but I didn't take a single picture today!! What a slacker mom. Julianne did amazingly well during her echo, but the rest of the day was pretty tough so there weren't many photo ops. :)

We'll be updating tomorrow as Julianne has her cath. Its going to be hard to hand her over. I already can hardly wait until she's back in my arms again...and this isn't even the surgery! But, I've said it before, and I'll say it a hundred times more, God's plan is perfect and it is that truth that we cling to. Please pray for a safe and uncomplicated cath and ablation tomorrow and that God's peace would fill our hearts and Julianne's. We are so thankful that God has provided for us to take Julianne to Boston for her surgeries! Children's Hospital is amazing and we are SO grateful to be here!

Oh, and one more thing! During the work-up today one of the doctor's talked with us about a study he's doing and asked if Julianne could be a part of it. This study is funded by a grant from the American Heart Association! Remember the heart walk? Well, there is just one example of where your money goes. :) Thanks for checking on us!

I can't resist...here's a picture from yesterday:

9 comments:

Anonymous said...

Kent and Jessica... PRAYING PRAYING PRAYING for all of you. Praying for God to give you peaceful rest tonight. Praying for courage and strength and complete peace tomorrow during the EP Study. (Jeff had one about 5 years ago and it went very well.) Will be checking in during the day...

Love to all of you and praying for Julianne and her sweet little heart...

Leanne

Anonymous said...

Prayers are constantly lifted up for Julianne and her safe keeping and care. She is certainly a tough little angel.
Much love,
Aunt Gnome

Mark said...

We never stopped praying!

May our gracious heavenly Father superintend this health ordeal as only He can! He is sufficent.

Mark

Anonymous said...

As I read the blog this morning I realize that Julianne is probably in getting the cathertization now.

I pray that God will guide those doing the procedure so that all will goes as planned.

I just cannot imagine how had it must be for you and Kent to see their little angel go through all this. But as you said that God has a plan and has brought her and you through so many trials and will continue to do so.

Please give Julianne a kiss for me and tell her the coo coo bird said hi!;)

God Bless you all ,

Love Aunt\Great Aunt Suzette

Anonymous said...

As I read the blog this morning I realize that Julianne is probably in getting the cathertization now.

I pray that God will guide those doing the procedure so that all will goes as planned.

I just cannot imagine how had it must be for you and Kent to see their little angel go through all this. But as you said that God has a plan and has brought her and you through so many trials and will continue to do so.

Please give Julianne a kiss for me and tell her the coo coo bird said hi!;)

God Bless you all ,

Love Aunt\Great Aunt Suzette

Cristy and Willem Mast said...

Hey strangers,
Willem and I are praying for peace, wisdom and steady hands during this week.
Cristy and Willem Mast

Anonymous said...

My prayers go out to you all and baby Julianne. I am actually going through the same things that she is going through and I understand. Reading her journey has been an uplifting to know that a child can be so strong. Her journey has been an encouragement for me to press on. I pray God's blessings on your family...All is well, baby Julianne will be fine

With Love,

Cynthia (Kent's co worker)

Anonymous said...

Praying earnestly for all of you. Will be checking in frequently!
Love,
Meredith

Anonymous said...

I'm am so glad Julianne is being such a trooper!
Thank you so very much for keeping us updated!
You guys are doing a great job by keeping peace in your heart! I'm so proud of you guys for staying strong! That's just what Julianne needs!
As always, I'm thinking about you guys all day!
Love y'all!
Kirstin