Full Repair Surgery: December 10, 2009!

Well, it's about time I update and document Burke's life and experience with Congenital Heart Disease (CHD). I haven't been as consistent about documenting Burke's life. To be honest, sometimes the task seems daunting. Yet, some days I feel like I just NEED to do it. So, here I am, I am just DOING it!

I am going to type something that we as a family have waiting Burke's whole life for.

BURKE IS SCHEDULED FOR HIS FULL REPAIR OF HIS HEART ON DECEMBER 10, 2009!

There- I said it. I just can't fathom it all the way yet. Though in one sense I can. Because I know what he can be. I know that IF they can successfully fix his heart so that it will be beating inside of him pretty much like a normal heart, than I know what this child is capable of. He is capable of running and playing and jumping and riding his bike just like any other 2 1/2 year old little boy. I know what he is capable of because he is a fighter and strong. And I am so grateful for this boy. I am so beyond grateful for him in my life. I just CANNOT even wait for December 10th. I cannot even wait. The wait is what will just test be beyond anything. Though I know I can do it, I just don't want to, you know what I mean? My little guy can get his heart fixed finally. His pulmonary arteries are big enough to enable him to get his full repair of his heart- so let's do this- NOW!!! That is what I want to scream and pledge to all the doctors!! But, still I have to wait. It is good for me to learn patience and endurance and I know that deep down inside. But deep down inside me is also a conflicting force. Impatience, anxiety and fear. I am impatient because I want my little guy to have this surgery because he can get off his oxygen. He can get off his feeding tube. He can eventually get off his meds. He can be free. And I will be freed from tubes and cords also. I am impatient and anxious and fearful because I don't want Burke to get sick between now and December 10, because that means that he won't get that full repair surgery on Dec. 10. He and I and our little family will have to wait until he recovers which could be a month. I am nervous that he will get sick. There I have typed what I feel anxious about. I have prayed and keep praying everyday (and will continue to pray- probably everyday- until Dec. 10 that he will not get sick. I want that more than more than anything right now in my life. I want him to be healthy and strong and ready for a new life with a fixed heart.

Burke has had all his past 3 open heart surgeries and other testing and procedures up at Primary Children's Med. Center. But they don't feel comfortable doing his full repair surgery without a Senior Surgeon on their staff. You see a terrible horrible awful thing happened almost a year ago now. Dr. John Hawkins- senior and cheif Cardiothoracic surgeon at PCMC was diagnosed with stage 3 Pancreatic Cancer. Last January or February of 2009 they gave him 3 months to live. Everyone who knew him or worked with him or had him work of them were devastated. I still can't believe it. He has helped and fixed so many kids hearts. He has helped on Burke's heart. He has been in on every surgery that Burke has had up until now. We have a special place in our heart for him and are grateful to have known him. He is actually still alive and is doing better than anyone has expected.

So, since he retired that surgeons at PCMC did not feel comfortable performing such a difficult surgery with out the experience of a more senior surgeon. We had to start checking out other places for a different surgeon. We knew that we wanted to go anywhere even if it meant us taking Burke all the way to the other side of the country if he were to get the BEST care possible. We didn't just want to settle for anywhere know how difficult this surgery could be. Primary's started sending Burke's medical information to Texas Children's Hospital and to Lucile Packard Children's Hospital at Stanford University. These two hospitals are up near the top in Cardiothoracic Surgery. We debated the two since we live in between the two places.

My decision was made when I was researching the different surgeons from these two named hospitals. I came to Dr. Hanley from Lucile Packard and I was overcome with emotion and couldn't contain myself. I cannot still to this day put into words what I felt, but I know the feeling I felt and I will never deny that. I still feel it now when I look at the hospital's website and see his picture. I knew that he was going to be the one to do Burke's full repair surgery. This was about 2 or three months ago. So, though I knew that I felt that we should go to this surgeon, we still had to get him to accept Burke's case. Dr. Hanley is a world renown surgeon. He is amazing and was a mentor and teacher to our surgeon Dr. Kouretas from Primary Childrens. That was also a deciding factor in going to with Dr. Hanley-because he had ties with Dr. Kouretas. It also helps that my parents still live where I grew up in Northern California so they can be of help and there for support during his surgery.

Burke had another Heart Catheter awhile back here at Phoenix Children's hospital and all looked promising in his heart to keep going forward with getting him to his full repair. We sent his test results of the Cath. to Dr. Hanley and about two or three weeks later we heard from our Cardiologist- Dr. Graziano- of the good news. Dr. Hanley accepted Burke as a patient! We could not believe it! What we had hoped and prayed for for so long had come to pass.

There have been so many miracles that Heavenly Father has graciously blessed us with. Though I know we don't deserve it most of the time, I know Burke deserves it for he is perfect. And I know Heavenly Father is watching over and protecting him. I know that He watches over us and is mindful of me and my little family. We have really been through it over the past two plus years. We have had the highest of the highs and been through the lowest of the lows. And I know Heavenly Father has watched over us every step of the way. There are days where I think that it can't get any worse. Let's be honest, everyone has those days and you know what I will be the first to tell you that I have had plenty of those down days. And sometimes it even gets worse than those worse days. But you know what, there are better days. And then there are great amazing and perfect days where I just want to sing on top of a mountain just like Maria from Sound of Music.

I think what helps me to have better days than worse days is to be faithful. Now this hasn't come easily for me. I have a hard time doing the small and simple things that are- over time the biggest and best thing for our spiritual grow. They are necessary. They are vital. They are the Sunday-school-lesson-answers that we- I tend to overlook their importance. Pray. Read your Scriptures. Be faithful. Be obedient. I have become complacent in the area of ready scriptures and being obedient. Because through obedience comes faithfulness. And with our faith we can move mountains. With our faithfulness we can be born of God. With our faithfulness we can heal hearts. With our faithfulness we can believe and know that Burke's heart can be fixed, healed and become whole. This thought more than anything yet in my life makes me want to be strictly obedient. And at this moment I know exactly why Heavenly Father has us go through the experiences and challenges we go through. For our spiritual growth. To draw closer to Him. To repent of how we are naturally and to change actually change to become more like Him.

Now, I say these things like I have done a great job every singe day through this trial I am going through- no. I have not, quite the opposite actually. It's been rough. But I know that Heavenly Father has blessed me with quite a tender mercy just recently. When we finally had a date for Burke's surgery was the tender mercy from the Lord. He showed His grace and mercy towards me that day because He knew that I needed to see the light at the end of the tunnel. Knowing that Burke will have his full repair gives me so much hope. It makes we weep at night knowing that there is a possibility that Burke can become normal. It is making me emotional right now. When the end is in sight there is hope. When it is within reach there is the hope I need to get through these trying times. Heavenly Father is helping me through this trail because He is trying to teach me that I need Him. I have learned that. I know that for a fact now. I have always believed that, but after you go through something that tries you beyond what you think you can handle, you know that we NEED HIM. I NEED HIM. And I will always need Him. For He is our Maker and loves us so much that He will show us He is here for us when we are ready to NEED HIM.

I can't put into words how grateful we are for Dr. Hanley for accepting Burke as a patient. I can't put into words how excited I am for Dec. 10th. We had a phone conversation on November 12 with Dr. Hanley. He exceeded our expectations ten fold. He was confident in fixing Burke's heart. He gave us hope and reassurance. He told us that though this surgery might be Burke's most complex surgery, his recovery might be the quickest because his heart will be fixed. We could only be in the hospital for 10 days up to 2 weeks! I just can't put my mind around it yet! We are just beyond excited and anxious and SOOO READY for it to be December 10th I can't even stand it.

We will keep you updated about how Burke is doing. I want to document how he has been lately for my records and for his. But, until then, we wanted to share the most amazing news about Burke's upcoming surgery! Have I mentioned it will be on DECEMBER 10th!!!! Oh, I did, didn't I?