Friday, August 5, 2011

Paxton truly is my little miracle man. This week has been full of amazingness. His surgery was Tuesday morning. At 7:15am I had to hand him over to the nurses to go back for his surgery. It was insanely hard to give him to someone knowing what they were going to do. Sooo! Hard!! Anyways, it took awhile before they actually got him opened up and on bypass. There was a bunch of scar tissue that they had to work through from the first surgery so that's why it takes so long. After lunch they came out and told us that it was going to be more like midnight before they were done, but thankfully about 4:30pm they wheeled him to his room. He did absolutely beautiful during surgery.

Back we already knew, he has Shone's Syndrome which consists of 4 defects. One of those was already corrected in January. What they repaired during this surgery has absolutely nothing to do with Shone's. For short, it's called SVAS and it's normally found in kid's with William's Syndrome and is never seen in an infant. The surgeons had no information or statistics on infants that develop this. It just doesn't happen. (After we originally met with the surgeons I did do some research and found a handful of cases involving infants. Unfortunately most of the infants either died during the diagnostic heart cath or during surgery.) The surgeons were very confused as to why his aorta developed this. There's just no known reason for it. They were very very hesitant and worried about doing this surgery. Making a long story short, they did not give us good odds. In fact, at one point during our meeting they told us they wished we weren't such good parents. It makes it easier for them to give bad news to parents if they aren't good parents. It sounds horrible, but it does make sense.

During surgery they saw that the material they used during the previous repair had gone haywire. It's a material called cormatrix aka pig gut. It's supposed to grow with and essentially become the tissue that you are attaching it to. In Paxton's case it definitely grew, but not the way it was supposed to. Instead of growing with the aorta, it grew out and around and inside of it causing the artery to be almost completely closed off. So because of that they decided to use a different "old school" material called gortex that doesn't grow. Without going into all the details of that, they are hoping that it will work just fine and they won't have to do anything else to it.

Because his aorta had such a strange reaction they sent off a piece of his aorta and a piece of the cormatrix for biopsy. We are still waiting on the results from the aorta, but the cormatrix immediately came back as inflammation. It didn't even recognize that it was a foreign material.

Post surgery he has been doing fantastic!! He was put in a special surgical suite room because they thought he would bleed out or have to be put on life support. Neither has happened! Praise God! His vitals have stayed wonderful! Today his chest tube came out and later he will come off of the ventilator. Wooo!!! I'm not really sure what the next step from that will be, but probably to start weaning from all the drugs and get back to eating.

I'm just so amazed at how God is carrying us through! He has been really showing Himself strong on Paxton's behalf. He has smashed the odds that were given to him.

Through all of this Josh has had a chance to connect with a couple other "heart families" that are here. We are actually sharing the surgical suite with one of those families. Their daughter is on the life support I mentioned earlier so please keep her in your prayers as well. I really believe that through all of this that God is going to open doors for us to be a blessing and minister to others that are going through this.

Thank you all for your love and support! You are amazing!


  1. That's just one of the amazin' factors of God, he just leaps above and beyond all odds. It's good to hear little Paxton is an odd breaker.

    I can't tell you the families we had the opportunity to counsel and support. Our cardiologist would refer other parents to us. There is just nothin' like talkin' to other parents who have been there~~done that.

    Know that your precious family has many on this end praying for ya'll. Our God truly is an awesome God.

    Love ya sweetie and I'm here anytime you need to vent or just have someone listen.

    God bless and enjoy this magnificent day!!!

  2. Thank you so much! I got to have a good talk with Charity today. It was so good to see her! Thank you for praying for us! Love you!!