Thursday, July 18, 2013

We made it...

We are officially Post-Fontan!!!!

We have dreamed of this day since Jacob was in my belly and we found out he had HLHS. We knew he would need 3 open heart surgeries to survive. Back then it seemed so far away. The day we could be Post-Fontan, the day we would no longer have this surgery looming over us. That day is here. We did it, we are officially Post-Fontan!

Honestly, part of me is nervous because he is doing so well. I keep waiting for something to happen. Thankfully he has been stable and has done better then I could have imagined. 

We started off the day by running late. It never fails, our alarm clocks didn't go off and the iPad I set as a back up ran out of power and turned off. So we woke up 3 minutes before we were supposed to be there. I only woke up then because my mom happened to wake up and see what time it was. Thankfully we were right down the street at the Ronald McDonald House. We got dressed, parked and made it upstairs in the hospital in 20 minutes! He was having his MRI study first then going straight into his Fontan. They gave him versed to calm him down before we went and boy did it work. He was punch drunk and laughed the whole way down the hall as they were wheeling him to the OR. He kept saying "Weeeeeeeee" It was adorable! I was starting to feel the tears coming as I kissed him good-bye then I turned around and saw the doctors open the doors and Jake Pointed down the hall. It was like he was saying "Lets do this". I couldn't help but smile. Off he went, my amazing strong boy.

Everything went very well. Surgery went smoothly, Jake had no issues coming off of the bypass machine or the ventilator. He was extubated by the time we saw him. He only had one chest tube, a inter-cardiac line which goes directly into his heart, and an arterial line. They had to put the art line into his groin area because his his veins and arteries are so used up. They tried the hand but were afraid pushing it anymore could risk him not getting any blood flow to his hand which would be VERY BAD. He only needs the art line for the heperin they are giving him, once they get him to therapeutic levels they can switch him to lovenox. He is on the heparin because of his factor IV Leiden gene. He is at risk for clotting so we need to have him on anti-coagulants for a few months post-op. They have already gone down on his heart med (Milrinone) and he may not even need enalapril (Blood pressure med he was on at home) anymore once he goes off of the milrinone. He is getting some dex to help take the edge off. It is like a Valium but without the blood pressure side effects. He is also getting Fetinal for pain but we are transitioning to morphine. I know I am not spelling any of these meds right but forgive me I am too tired to look it up.

Dr. Spray, Jacob's Surgeon
 We are so blessed to have him as Jacob's Surgeon.
He is not only one of the best pediatric heart surgeons in the country, but he is a great guy too!
His oxygen levels are still a little low but he is still pretty sedated so that is normal. He needed a lot of fluid pushed earlier to keep his blood pressure where it needed to be but they said that is very common after the Fontan. It is a way of getting the volume in him to "Kick start" the new circulatory system. It has balanced out now and they actually are starting diuretics to help get rid of fluid now. It is a balancing act. He has not needed any blood transfusions since coming back. They do get blood in the OR on the bypass machine but he hasn't needed any transfusions.

He is not draining that much blood into the chest tube which is great. This may increase tomorrow as his body adjusts to the new pressure in his body. If he continues to do well they are going to shut off the sedation tomorrow, wake him up and get him moving more. The plan is to remove the inter-cardiac line tomorrow and possibly his art line. The chest tube will stay in for a while but it is really small and can be pinned to his pants so he can walk. They said they will get him up and walking around tomorrow or Saturday depending on if his art line can come out or not.

The plan is to keep him sedated and calm tonight. He is waking up once in a while but I can easily calm him right back to sleep.

Thank you so much for the continued prayers for our precious little warrior. He continues to amaze me with his strength and will to fight. The next few days will be rough but I will try and update when I can.

post signature

1 comment:

  1. May God's angels keep watch over Jacob at this time. My thoughts are with him and his family.
    --his great uncle, Warren