Our latest trip to Primary Children's!

Here is Burke on Temple Square for his very first time on Sunday, April 13, 2008.

On April 13, 2008 we headed to Salt Lake for testing on Burke's heart at Primary Children's Medical Center. He received a chest x-ray that afternoon, and then went to a clinical exam with two Cardiologists, Dr. Jou and Dr. Su on Monday the 14th. These Cardiologists were also there when Burke was born and were his doctors when he had surgery when he was three days old. So, it was good to see familiar faces. At the clinical exam, Burke's oxygen saturation levels were checked and Dr. Jou asked us a ton a questions on how Burke had been doing for the past 8 months. He could not even believe how well Burke looked for having oxygen levels in the mid 70's (74% on average). He then went on to explain what surgery would be performed on the 17th of April if everything checked out well in the heart catheter that next morning (April 15). He did not foresee any problems with the heart catheter, and we were very hopeful that Burke would have his heart fully repaired and have the surgery be a success. We left the doctors office hopeful and excited for the next couple of days, yet still slightly nervous for the heart catheter in the morning. Burke fell asleep with the help of his bottle. He was exhausted from a long and long awaited day.

Tuesday, April 15, 2008: Primary Children's- 6 a.m.

We arrived at the hospital at 6 am for his heart catheter. Sweet little buddy was still asleep luckily. They checked us in and asked us a bunch of questions about medications he is on and if he has been sick recently and we told them about his recent ordeal with RSV. We were so grateful because Burke got RSV but was never hospitalized from it. The worst of it lasted 2-3 days max and he was good to go. But, the nurse eyebrows lifted at the mere mention of RSV and began asking more questions about when he had it and if he was hospitalized or not. I explained that I did not know for sure when he had it, but she told me she had to know. So, I tried to remember and when my brain could not come up with the answer on its own, I called my pediatrician and had them check the records. Sure enough Burke had RSV on March 18, 2008 just four weeks ago to the day. It was definitely cutting it close and the nurses had to make sure that it was okay to still do the heart catheter (because it was an evasive procedure and he had to be sedated to have the test performed). They checked with a ton of people and finally they told us that they were still going to perform the catheter. Thank goodness! Primary's policy is that you have to be recovered from RSV for at least 6 weeks before they can do surgery. Since Burke's case of RSV wasn't severe they felt okay to go ahead with the procedure.

Here is Burke in his cute little hospital jammas before they took him into the cath lab. Sorry the picture is blurry, he was getting tired and this was the best picture we could get. Poor little brother, he just looks like he is saying, "mom, please help me, why are we doing this?" Seeing his face in this picture just broke my heart.

The heart catheter took about 2 1/2 hours. It was a very long wait. Burke did great and everything went very smoothly. They sat us down and showed us the pictures and video of his heart. It was amazing to see his tiny heart beating and the technology they have now days that enables us to see his tiny arteries and everything that makes up his heart. We are blessed to live in this day and age. The doctors began to tell us what they found in the catheter. And what they found was not good news. His pulmonary artery has not grown very much since the last surgery. The pulmonary artery was the one that was a third of the size that it should be when he was born. Dr. Kouretas, Burke's heart surgeon, slit open the branches of the pulmonary artery as it splits off to the right and left lung. He slit it length wise in an effort to help that artery to grow. The right branch grew from last surgery, but the left side has not grown as much as they had wished. And they said they cannot perform surgery to fix the other problems in his heart until that artery is bigger. Or, "fat" and "juicy" as they put it.

The first problem was the pulmonary artery and that it didn't grow. The second problem they found in the cath lab was that there is a tendon-like cord attached from the tricuspid valve to the septum. The tricuspid valve is the valve which separates the right atrium and the right ventricle. The septum is the wall that divides the right and left sides of the heart. This cordea (sp?) or tendon-like cord is in the wrong spot. It happens to be located in different places on different people. But for Burke, it is in the worst spot it could be in. The cardiologists told us that if the surgeon nicks that or cuts it then it would not be a good thing for Burke. That valve is vital to the heart staying alive and healthy. The reason it is in the wrong spot it that they could not baffle the aorta over the the correct side of the heart because of that cordea is in the way.

We couldn't believe what we were hearing. We were so happy and excited and hopeful just the day before only to be crushed when we hear that they found some not so good things with his heart anatomy. So, from here Burke was sent upstairs to recover for the next four hours after his heart cath. The surgeons and cardiologists would conference the next day as to what would happen next. Burke did really well in recovery and was so hungry he gulped down his bottles like he had never been fed before. He was not allowed to eat or drink before his heart cath, so he was soooo hungry! It got a little rough nearing the end of the four hour recovery, Burke was really fussy and he seemed like he was in a great deal of pain. His bruise in his groin was so huge it was unreal. He would not even move his right leg for the longest time.

Dr. Kouretas, the surgeon, came to see us along with Dr. Jou in post- op. We had so many questions for him and we began discussing the different possibilities with Burke's heart. He told us that he would not perform surgery because the RSV was too recent, he needed more time to get it out of his system. Another reason was that they wanted some time to see if his left pulmonary artery would grow. They told us to chunk him up and get him as plump as we could. Another heart cath was scheduled for six weeks later on May 20, and tentative surgery on May 22. But some good news that the surgeon told us is that the cordea that the cardiologist told us could not be cut or hit, could actually be clipped and re-attached in a different location on his septum. This is the best news we had heard all day. Dr. Kouretas has done it a couple other times where he has disconnected the cordea and moved it so that he could move the aorta over to the correct side of the heart. Hope. We have hope. And we are so grateful for hope and for miracles we see all the time in our lives in regards to Burke. This was a long post, but I have been needing to record this for a long time, and just haven't had the emotional or physical energy to begin writing it. I have more to explain. Because just today we found out that surgery is postponed six more weeks out because Burke has an ear infection and had a low grade fever. I will explain more later, but as of May 15 we are not going down to Utah next week for surgery.

His heart catheter will now be on June 24 and tentative surgery on June 26, 2008!

Here are some pictures of Burke soon after we got home from our trip in April. He was on oxygen for a couple of days, until we checked with the doctors and they told us to put it on him at our discretion. He is doing great with out the need for the oxygen. You would never think that he has a heart condition. He is so sweet and such a blessing!