Tuesday, September 13, 2011

Katy’s September Cardiac Clinic Update

Today was Katy’s Cardiac Clinic.  ACK!!!!

Looks like we have come to a fork in the road and it is time to make some major decisions for our little girl.  Decisions that no parents should have to make, sacrifices to Katy’s quality of life as well as our entire families.

I knew that this day would come… I knew that it was always  a possibility… I know that we are on borrowed time… I also know that it SUCKS.  ( sorry… but it does)

It appears that we have reached another plateau.  Katy has not gained any substantial weight less then two pounds in the past year.  All our hopes and dreams for the G tube have failed us.  Recently she has also stopped gaining height.  All not good, really concerning this to both Mike and I and the team. 

So what do we do?! What are our options? A new heart would be great!!  But, given that Katy has been listed for 16 months and we are still waiting… we have to be a bit proactive and expect that we could be waiting for possibly another year.

We don’t have a year to wait and expect that damage won’t be done to other organs and cause irreparable damage to her growth.   

Katy needs to be in the best possible place nutritionally when it comes time for her heart.  This will make her recovery from Transplant that much easier. 

Our next step the  step I have dreaded.  Is to hospitalize Katy and start her on IV drugs (Milrinone) to help improve her heart function.  The hope is that with this med helping relieve some of the increased pressures and that the calories she is usually burning up will be used to improve her growth.

It is a big hope and there is no guarantees that this will even work.  So the plan would be for Katy to be hospitalized for a minimum of 6 WEEKS to give this a shot.  If it were do work then we would be hospitalized until Katy got  a new heart. As a result Katy’s Status on the transplant list would go from a Status 1B to a Status 1A which makes her 4x more likely to get a heart than at her current 1B status. 

It’s not really an if it’s more like a when. 

We need to work out logistics:  Childcare, finances, holidays, etc. etc.

We will once again need our Team Katy to kick it up into high gear… and rally around us.  You are what get us through. 

11 comments:

Dirt Road Quilter said...

Oh Aimee! That does suck! Dang it! I'll step up prayers for Katie (and y'all) and add her to more prayer lists. I'm not on SS much right now, but have you asked for prayer there? Lots of great prayer warriors there. I figure the more, the better. Can I do anything at all from here? Do you mind sharing your address? I would love to send Katie and y'all a note now and then. Lots of warm hugs from the end of the dirt road and especially healing prayers for sweet Katie.

Amiee said...

You are too sweet!! I always love hearing from you. Yes, SS is taking the news hard... you have all been Katy's "Aunties" since utero... Katy Loves mail... she always announces "Special Delivery" when we get anything other than bills. :)

10 Pleasant Street
Wakefield, MA 01880

The DuBois Family said...

Amiee I love you so much. I miss you tons and you are always in my prayers. I am sharing your blog on my page so my friends can read about Katy. Call me when you can. Kiss Katy and Patrick for us. We love you all so much.

Erica said...

Amiee!!

You are in my thoughts and prayers and I know you will get through this! You are sooo strong!

Anonymous said...

You don't know me, I saw this blog on the mckmama facebook page. I have no idea where your daughter is at or what the options are, what her condition is, etc. My son had heart surgery at the University of Iowa. Dr. Davis is a pediatric cardiologist and has the ability to place an artificial heart to bridge while waiting for heart transplants. He is willing to see patients all over the country. Again, this may nor may not be an option. I only just saw this post now. Feel free to take it simply unnecessary advice if it doesn't pertain to you.

Sarah said...
This comment has been removed by the author.
Anonymous said...

Here's a link to what he's doing. Sorry about that.

http://thegazette.com/2011/07/11/artificial-heart-transplanted-in-patient-at-university-of-iowa-hospitals-and-clinics/

Maggie May said...

I am praying for your Katie xo

McKay Family said...

Amiee & Family,

I am sure this is such a difficult time and decision! You are and will be in my thoughts and prayers!!! Wrap that blanket around her and know it is full of love, blessed thread and my prayers!!

Lindsay

Anonymous said...

Be strong and know we are all thinking of you. We will help in any way we can! Keep in touch with mom on FB.

Love from The McDonaghs

~Jenn said...

Praying for you and Katy.