Thursday, September 13, 2007

Care Conference Update

Our Care Conference was overall pretty uneventful...it was about an hour long and everyone was even in the mood to throw in a couple jokes.
People in attendance:
Dr. Parikh (Cardiologist)
Dr. Rupple (Intensivist)
Sarah (heart center NP)
Jessica (Kate's nurse)
Case Management and Social Work

Dr. Parikh did most of the talking...basically overviewing her heart condition: she has 3 major issues right now:
1. Leakage in the tricuspid valve
2. Stenosis (narrowing) in her pulmonary arteries
3. Pulmonary Hypertension (high pressure in her lungs)
Any of these could still improve and if so, could indirectly affect one of the others making another better also. We will know within the next few months. If things don't improve, then we would then discuss the next option which would probably be surgical repair of the tricuspid valve...but we will worry about that if that time comes. He will let us know as soon as he hears back from U of M...as to when and if they want to see her....that should be early next week.

There was a little debate about when we could go home..there was talk of getting her out and about more through the weekend. We spoke up and said we were comfortable taking her now...nothing has been done through the week. We know what to look for and will much on top of the game if something were to happen again.

We had a long talk about the term "congestive heart failure" Dr. Parikh told us that was a term from the 20's. It is scary because the word failure is in it..but it doesn't mean the heart will fail or stop..just that it is failing to do it's job. He made the comparison that to every person it means a different thing and if Payton Manning had Congestive Heart Failure, he could still probably do more than we could with our hearts as they are...it is all relative as to what each individual's heart is used to.

So...the plan...GO HOME TOMORROW MORNING. We have to get the home oxygen arranged...but other than that...we should be good to go! YEAH! PRAISE GOD!

Yeah, we're going to be a little scared for a while....yeah, people might "stare" at her oxygen and little kids might ask what's wrong with her? We might have to be a little cautious and not go to the germ infested places. But...we just hope and pray that over the next few months...things will get better and she will get stronger.

She is eating okay...they assure us that will get better once she is playing more, in a home environment and utilizing more energy....it can be pretty draining around here. I'm sure we will be at the pediatricians office weekly for the next few months.

So...Andy and I are pretty excited. We're gonna head out for ice cream to celebrate! We've got a long road ahead....as she still needs a lot of care...but we can do it...THANKS TO A LOT OF YOU!

10 comments:

Melissa said...

YEAH! I'm sad that I will not get to see you all before you leave, but so very happy for you! I am going to be in Fort Wayne on Sunday and would love to stop in and say a very quick HI, if you think it's ok! Just let me know. You know that you can call the hospital anytime and our docs will do what they can for you, answering questions, etc. Trust your mommy instincts, they have not failed you yet!

God bless you all!

Anonymous said...

Hooray!!
So very thankful that you can come home now. We will be here if you need anything so do not hesitate to ask. Looking forward to seeing you all soon.
Bonnie and Jerry

Anonymous said...

YAY!!!

Just click your Ruby Slippers three times and whisper, "There's No Place Like Home."

Poof!

Much Love and Cheer, Susan

Anonymous said...

Hi KK,

That's TERRIFIC news that you get to go home tomorrow morning! I'm sorry we won't have a chance to officially say goodbye, but I know that I'll be talking to you in the near future.

I'll look forward to more Cold Stone Creamery & Macaroni Grill the next time you're in town!

Take care,
Mira :)

Anne said...

Super Super Super! I'm so glad you will be going home. That must be a great feeling, even with the little bit of fear! We will continue to pray for Kate and for you all that you might be able to get back into a normal routine!
God is SO good!

Anonymous said...

That's just wonderful news - we're so happy that you're on your way home at last! Can't wait to see you in "the Fort." Take care- Gina

Deanna said...

Hip-Hip-HOORAH!!!!! :) So excited that you're headed home. You can trust that we'll keep praying for you.... I'm sure it will be MORE THAN WONDERFUL to sleep in your own bed!!! Sweet dreams tonight.... the last one in the PICU!!! HUGS TO YOU!

Anonymous said...

YEAH!!! So glad to hear that you'll all be coming home tomorrow. Wish there was something I could do for you but I'm only a phone call away if you need anything. You are all still in my prayers. God is good!

Blessings, Linda

Anonymous said...

So happy to hear that you are coming home. Several of us are willing to drive Seth to or from school or both. We'll discuss that maybe tomorrow night with your Mom. Let me know how else I can help. God bless!!

Nancy

Etta Reece said...

Krista, I know it must be exciting as well as scary to be heading home again. But I'm sure you must feel like an official "nurse" with all of the experience you have had over the last year. There will be nothing better for Kate than to be 'home' with her brother. God Bless all of you and I will continue to keep you in my prayers. Love Etta