Friday, November 04, 2011

Enjoying Life at Home

I am SO happy to be home!!! But, my gosh does it look like a tornado hit.  That’s OK I am happy to be among the chaos.  Stepping on Legos…sleeping with Strawberry Shortcake Shoes, sure beats sleeping on a cot in the hospital any day.

I am going to try and answer a few questions that have come up.

How is Katy?

Katy is doing great. She is happy to be home and playing with her brother and is begging to go back to school. It is hard to know what helped Katy turn the corner was it…the Zithromax… the strict fluid restriction… or the Milrinone.   I’m guessing it was not the Milrinone I think it was a combination of  fluid restriction,Zithromax and a few doses of IV Lasix to dry her out.  Time will tell.  Katy is directing  us and we will continue to follow her lead. 

Why are you  home? 

We are h0me because as much as it is important to keep Katy’s heart healthy it is also just as important to keep her quality of life just as healthy.  For me, and I think Mike would agree hospital living is hard on all of us especially Katy & Patrick and although it is hard to go back and fourth, I think as long as Katy’s health allows it is best.  What that means is that there will be lots of follow up appointments and admissions for “tune ups”  eventually Katy’s heart will just get too sick and we will have to stay in the hospital on Milrinone until Katy gets a new heart.

Is Katy still a Status 1A?

Unfortunately, Katy is no longer a 1A.  Once she stopped the Milrinone IV she was put back as a Status 1B.  Every time she is on Milrinone she will continue to gain time as a 1A.  Thankfully the UNOS transplant list is strictly monitored, which although it’s hard for us right now, because we all want the gift of a new heart yesterday…. it is not Katy’s time.  We have to have faith that the perfect heart for Katy will become available when it is needed.

Do you think about the donor family?

Of course we think about the donor family.  On our greatest day, as we are all rejoicing for Katy’s second chance at life.  Another family will be mourning the greatest loss.  It is impossible not to think about them and where this sweet new heart has to come from.  We hope that one day the donor family will find some peace in knowing their sweet baby lives on in our girl.

Do you still want me to drop off the meal I signed up for?

The Helping Hands site is still active and if you are still willing we would very much appreciate a home cooked meal from YOU!   Although we are home we still have lots of appointments and labs and it would be great not to have to worry about cooking on those nights.

Thank you from the bottom of our hearts for all the prayers, gifts, kind words and for all the donations to $1 campaign. You mean the world to us and we are so thankful for each and every one of you. 

Much Love,

Mike, Amiee, Katy & Patrick

2 comments:

prettycreative said...

Your family will remain in my prayers until Katy gets her new heart, as will her donor family. Katy is such an amazing little girl that has touched so many hearts. I'm glad that she is doing well and love seeing these posts along with your pictures. :) Christina

Anonymous said...

As a person said to our family while a member was waiting for a new heart- that person that the heart comes from will not pass away for your loved one or because of your loved one, but will be passing away because the Lord feels it is their time. Their family will choose to give the most precious gift they can give. I think that people aren't sure how to think and feel about the situation and I know that those words helped us immensely.
Katy will get the heart of someone whose family will be able to give a wonderful gift of life through their loss. Prayers with you all.