A Bad News Day

Dear friends,

The cardiologists and the surgeons got together to discuss Madeline again today, they have narrowed Madeline’s treatment possibilities down to 2 options: 1) A Miracle and 2) A Miracle. When your doctor gives you those as his best 2 options, what do you say?

Lisa and I went out to dinner tonight thinking maybe some good food would help. The food was good, but the dinner was bad. We commiserated as Lisa shared with me all the doctors had told her. They need to do surgery on her heart, but her lungs are not well enough. They need to get her off the ventilator so her lungs can get better but her heart won’t allow it. She is a perfect catch 22.

It seems like now the right side of her heart is growing but not the left side of her heart which would mean that if sugery were possible, it would be a one ventricle repair. In a one ventricle repair, they re-plumb her heart to work of 1 atrium and 1 ventricle. There are 4 open heart surgeries that take place in stages to accomplish this. Once complete, you have a functioning heart that will wear out at some point, and then you get a heart transplant. But because of Madeline’s other problems she would not be considered for a heart transplant.

Probably the hardest news was that we would probably still be here next summer or even through the next year. Even if she could go on a home ventilator, they wouldn’t let her leave the hospital because of her heart condition. We talked about what that meant for us, and what kind of lifestyle changes are we going to need to make. That’s hard, right now we can’t even plan Christmas.

We talked a lot about Madeline and trying to make the best decisions for her. Lisa plays peek-a-boo with her and thinks she can make her laugh, but with the vent tube in all you get is a quiet smile. We talked about how much we desire Madeline to come home and daydreamed about how wonderful and normal life would be. We talked about what we would do if God decided to take Madeline to be with Him in heaven.

Madeline has been on a rocky road lately. It takes a lot to calm her down, and she is needing more ventilator support lately. She is about 5.5 lbs right now, she gains some and then loses some. She is again roughly where she was a month ago. The doctors are concerned that her heart is not allowing her to gain the weight that she needs to gain.

One big question on the table is does Madeline have collapsing airways. They have decided to go ahead with a bronc study where they go into her airways with a camera and turn down pressure on the ventilator and see if her airways collapse or remain open. This is a risky procedure for Madeline because the camera would block her airways. It should be done in the next day or so, so please pray that it goes smoothly and PRAY THAT HER AIRWAYS ARE FINE.

I know that some of you believe in miracles, and some of you may not. Please pray for one on behalf of Madeline Grace. Pray that her left ventricle continues to grow and can be used. Pray for God to give her strength to get better. Pray for Lisa and I, our faith is still strong, but our souls are getting so weak. And continue to pray for Robert and Carrie’s new baby as well, that it would turn out perfect and healthy.

In His loving grace,
Shanker & Lisa (Madeline says hi too!)