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.