Tuesday, February 7, 2012

The Faces of CHD Part Seven: JOSIE

Written by her mom, Brittanie

We found out at her twenty week ultrasound that Josie had DORV. (DORV is what ?) When she was born she was taken to the NICU and they confirmed she had DORV, VSD (And this is.. ?), pulmonary stenosis, and TGA ( TGA Info ). She was stable in the NICU so they sent her home in 4 days.

At home she started turning dusky and blue but cardiology said she was ok. When she was almost 6 weeks old they did a CT angiogram of her heart just before getting discharged she started destating fast and called a code. She recovered quickly but scheduled her for surgery Monday because this happened on a Friday. She had a BT shunt placed. At 8 months old they scheduled her for her full repair. They decided to do the Rastelli procedure (Rastelli Procedure ) this didn't go as smooth as they planned and she ended up in full heart block (where the electrical impulses in the heart do not communicate).

And a week later had a pacemaker placed. Three months later Josie's ended up in the ER they found she had cardiomyopathy and was now in heart failure so they started her on milrinone and several other meds and did several procedures to see what they could do to help her. At Children's Minneapolis they decided they were going to do a right coronary artery reimplantation and bi-ventricle pacemaker to see if she recovered but she didn't. So in March 2011 her care was transferred to the U of M Amplatz Children's Hospital.
 When Josie got transferred to the U of M Amplatz Children's Hospital she was listed for transplant right away. They wanted to send Josie home because they thought she was stable. So they placed a G-tube for feeding because Josie wasn't eating and they placed a Hickman which is a permanent IV for Milrinone.

She was home for 10-14 days and was re-admitted for worsening heart failure. Josie was monitored closely and they did a work up to see if they could use a Berlin Heart as a bridge to transplant.
Josie on the Berlin Heart

She got the Berlin and 1 1/2 weeks later she received her donor heart on May 28, 2011.
I got a new heart!

Josie had complications being extubated and needed a diaphragm placation on both diaphragms. She has had several complications and is now on high flow oxygen during the day and bi-pap at night to help her breathe. And we know that she will need another heart transplant someday, probably sooner than later.
FINALLY at home after 8 months in the hospital!

1 comment:

  1. I have a son who went though his frist heart surgey at 1 week old n then 2 more by the time he was 3years old as of today he is 8 years old n done went thourgh 9 surgey 3 of them on his heart.....as of 2 weeks ago they done a cath.on his heart n told me there was nothing else they could do beside a heart transplant n that he would die if not n the truth iam scarred for him to have it can u plz.tell me anything about it n how long the stay is. ..thanks shannon...u can reach me at shannoncruz on facebook....