Praying for a miracle

Today we met with Dr. Davis to talk about Joshua's PDA and resulting issues with his heart lungs and other organs.  It went just as we suspected...Joshua needs surgery to close the valve.  This news is very disheartening and scary, but deep down I know he needs it.  Each day his lungs get worse and worse.  Settings on his ventilator keep going up.  His lung x-rays keep getting more "wet" and hazy.  Now his left atrium AND left ventricle are enlarged from overworking to pump the extra blood that keeps recirculating in his heart.  It is not a good situation. 

Dr. Davis mentioned that he would likely get "very sick" before he got better after the surgery.  We have heard that phrase from the nurses as well, but no one ever says what that really means.  Well, after much asking she said it means he might be on blood pressure medication because his blood pressure will be out of whack.  It also means that he probably will be upped on his settings on the vent.  Is there anything else I ask?  Isn't that enough? she says.  Well, could he die? I ask...do you really want to go there she says.  Yes!  we say we want it all laid out on the table! Joe says.  Yes, he could die...of the 2 babies with this surgery last year one of them died.  We also found out that this surgery is so rare and they have yet to do any this year so far!  How did Joshua end up this sick?  Why didn't the medicine work to close the PDA?  When I asked how others on the floor are doing with their PDAs, she said that Joshua is way outperforming everyone (and NOT in a good way) in terms of PDA size, lung function, heart swelling etc...which I guess is why he will be their first PDA surgery of the year even though we are already 2/3 of the way through it.  Why can't you be the leader of the pack in a positive way Joshua?

Lord, we are praying for a miracle for little Joshua.  You have the power to close the valve in an instant.  I pray that you would heal our son. 

Today during our snuggle time I sang to you, Joshua.  Sometimes it was just in my head and heart, singing praise songs and hymns and other times it was quietly, softly sung to you.  I hope you were encouraged.  I hope it strengthened you and all you are fighting against.  I hope it gave you peace.  Our God is a great and mighty God, a powerful healer.  Be strong and courageous, Joshua.  Mommy loves you.

The transitions to kangaroo were disheartening again.  Joshua did fine on me, but right before we transitioned and several times after they had to "bag him" give him manual breaths of air with higher pressure and frequency than the vent to get his HR and O2 levels up.  Another sign that his lungs are not functioning well.  It made me so sad for him.  As I left this evening I just felt so burdened for my son and his suffering...wondering how much longer his life will be here on earth.

Photos from the day:

Listening to your heart during care time
 

 

 

Getting weighed at care time



Are you sleeping???

Nope you're wide awake!!!