Monday, December 6, 2010

Emotional Rollercoaster

Man I don't even know where to start.. We checked in a few times last night and Evan was still doing really well. This morning we went over to visit and he looked so good :) I still can't believe how chunky he is! Anyways the ICU dr stopped in and let us know the cardiologists and surgeons were still on their weekly conference call discussing this week's cases and should be by shortly to give us an update. One of the cardiologists came in shortly after and let us know there was a potential problem. He said based on the last echo they think there is something else wrong with Evan's heart. The coronary artery coming from the left side is very large, and lead them to believe there could be some narrowing as it comes down to the bottom of the heart. The only way to know for sure was to do a heart cath. We then met with the other cardiologist who would be doing the cath and he gave us grim news. If they did find out there was narrowing in the coronary artery, Evan would be significantly higher risk for the surgery and we would need to also consider a heart transplant. Scott and I tried to stay positive but its so hard to get something like this thrown at you first thing in the morning and the outcome could potentially change everything. Evan went back for his heart cath about 145 and we didn't get to talk to the cardiologist until about 5pm. LONGEST waiting period ever. It's so hard to sit in the waiting room, just waiting. I knew when not one but three DRs came into the room that they didn't have good news. I can't even begin to explain the new "defect" they found. It was so unbearable to sit there and listen to them explain another problem with my perfect baby boy.. The DRs said our only options were to proceed with the Norwood surgery as planned, but the chances of Evan making it to the next surgery would drop to about 50%, or we could have him put on a waiting list for a heart transplant. Like I have said before, it's an unbelievable feeling to have no control over his life, but it's an even more unbelievable feeling to have his life put in your hands. This whole time we have thought the Norwood surgery was the best route to take, and the DRs have always agreed it was the best route. But now they had two options, and could not recommend one over the other. The choice was left up to us. How do you decide? How can I stand behind a decision for Evan's life, not knowing what the long term outcome will be? From the first day we found out about Evan's heart defect I have never wanted him to suffer. My number one concern has always been his quality of life in the future. I don't want my baby to go through life suffering in a hospital because I am too selfish to let God have him back. But this little boy is fighting so hard for his life, he is my hero and everytime I see him fighting for his life he gives me so much strength to fight for him too. Dr Chai, the surgeon, came by about 745 to talk to us again about the surgery vs. a heart transplant. I prayed and prayed for God to give us wisdom to make this decision and as soon as Dr Chai started talking I know God was answering my prayer. He gave us so much hope for Evan, 85% chance to make it through the first surgery! He let us know he had just participated in a nationwide study of 500-1000 HLHS babies and he is friends with the DR leading the study and he asked him if the complications Evan has made a difference in the mortality rate after these procedures and he agreed that there doesn't seem to be a connection. But every HLHS baby is different. No heart is the same. We are giving our son another chance at life, if it's in God's will Evan will make it through these surgeries and lead a healthy life. I pray every second that he heals my sweet baby, pray that he doesn't suffer and can come home to our loving family.. But I trust that the Lord has a special plan for Evan's life. I have so much faith that he will be OK.. Even so I can't help but cry watching every day unfold. But I don't take any of this for granted. I cherish every single second I get to spend with my Evan..

On a good note, Evan did SO good thru the cath and all day. He tolerated the cath lab way better than he did the last time. He was also very alert this evening. He loves holding onto Mommy and Daddy's finger :) He also opened his eyes for us a few times, I just love knowing he hears us and wants to take a peek!

Surgery is now for sure scheduled for Wednesday morning. They are going to let him rest tomorrow and keep recovering from the cath today. Hopefully we will be able to hold him for a little bit tomorrow too!

On a side note, if you have sent me a message or anything to let me know you are praying and thinking of us and I haven't written you back, I'm so sorry, but please understand how much stress we are under right now and hopefully reading my blog you see how chaotic our days are! We really do appreciate all of the support!

1 comment:

  1. Wow! What a rollercoaster!! Keeping you all in our thoughts and prayers for a successful surgery tomorrow!
    ((heart hugs)))
    Jenny- mom to Aly- 17 months HLHS