God, please have mercy on my child...

I pray the same prayer each day when I wake up and each night before I go to sleep....God, please have mercy on my child.  Stand guard over him and continue to protect his heart.  ~Amen


For the past two weeks, I have been waiting on a phone call from Xavier's cardiologist.  She was going to have a meeting with his surgeon and make sure that he was on board for doing Xavier's fontan and valve repair late this summer.  This week she finally called, but the outcome was not at all what we expected.

"It is the teams assessment that separating the procedures is the best path for Xavier's heart and for an optimal recovery."

Breath, Jackie Breath..keep it together.  Do not fall apart yet...get off the phone first...just say thank you and hang up....

So basically, instead of having one large, two procedure open heart surgery at the end of the summer, Xavier will be having two open heart surgeries.

The first, the valve repair,  will happen soon...2-4 weeks.  We are currently waiting on the scheduling center to call with an official date.   I expect that to happen this week.  The stage three fontan has been pushed back till next summer.

We are not thrilled that little man will have to have an extra open heart procedure, but we have faith in God and in our team that this path is the best one for him.  He is expected to be in the hospital for 7-10 days following surgery.  I will update the blog during and following the surgery.

Please continue to pray for us.  For strength for the whole family.  Pray for our surgical team, that God may guide and direct their decisions and their hands while Xavier is in their care.  That God may fill the OR and place his hands upon Xavier's heart, allowing it to respond to the surgery in a positive way and that this repair will help Xavier to feel his best.   Pray for peace for Xavier while he recovers and peace for us while we hold his hand.  Prays for an infection free recovery, that is speedy.  Home is where Xavier will want to be, so I hope that we can get back to our lives quickly.

Life with a "medically fragile" child is never certain.  There will always be something on the horizon.  There will always be another upcoming appointment that has us nervous, always be an upcoming MRI, cath, procedure.  We live in the land of possible pace makers, surgeries, transplants.  Our goal is to live as normally as we can, while always living in reality.  Our goal is to make sure Xavier gets the most out of life, while still protecting him.  I hope that I can master the ability of protecting him, without him knowing it!!!

The next month will be a hard one...it is possible that X will have to spend his second birthday in the hospital.  However, my faith is strong, his will is strong and our community and support system stands strong behind us.

God, please have mercy on my child!  Stand guard over him and continue to protect his heart.  ~Amen