July 9, 2010: First trip to UCLA Mattel Children's Hospital

Okay, so... you hear people talk about "UCLA" and how amazing the hospital is, well... let me tell you, it is the truth. As we walked through the doors, I said to Jake, "this is nursing HEAVEN!" I was amazed at the size, cleanliness, and every aspect of the hospital. Aidan was so excited to go "uppie, down, uppie down" the elevators. As one doctor pointed out to us, "he has not quite learned elevator etiquette, where no one talks or looks around..." Well, that's my 2 year old for you. He may not have many words, but he is full of personality. We went "uppie down" the elevator to the 5th floor where we met the nurse practitioner who would be assisting in Aidan's case. (I was SO relieved and excited to know that a "nurse" would be with us throughout this process!) Our first stop was the Pediatric Unit, where they had approximately 10 Power Wheels cars of various makes and models, 3 mini basketball hoops, and various other goodies on their outdoor patio. (I am sorry but my camera did not take good pictures, I will try and post some pictures of the hospital at a later date). Aidan was so well behaved during his physical, except when he tried to press the CODE button. Oopsies! The nurse informed us that Aidan's pedal (foot) pulse on his left side were completely absent. This means that his "coarct/narrowing" is so bad that he is not getting sufficient blood flow to the lower portion of his body. After we finished with the head-to-toe, the NP took us to the Pediatric Intensive Care Unit (PICU).

PICU = One Scary Place

It is one thing to see an adult intubated and sedated, but to see a child... that is a very different story. I was thankful to be able to see the PICU, it would be less of a shock when it was our son who would be lying in one of those beds. I was also thankful to know that in the PICU they have their own team of doctors, residents, fellowship students, AND all the nurses are cross trained in Cardiac ICU as well as Pediatric ICU. I have faith that Aidan would be in good hands. After our brief tour of the PICU... it was time to meet the surgeon.

Not only was the surgeon nice, but he was patient and willing to answer all of our questions. He even sat patiently as I was scribbling down in my notebook every word that he was saying. (Of course I had my color coded pens to help with my note taking...) The surgeon explained the approach he would be taking with the surgery. He would be making an incision through Aidan's side, avoiding cutting the muscle as much as possible, and separating the ribs to get the best view of the aorta. He further explained that the procedure would take approximately 3-3.5 hours and he would be able to see Aidan once he was returned to the PICU. He also noted that Aidan would most likely be on a ventilator (breakthing machine) and he would have 1-2 chest tubes to help with the drainage. Aidan would be staying in the PICU for 5 days, and then discharged. Jake and I had about 10 questions that we needed to be answered, and the surgeon addressed every one of them. Our biggest concern was wether or not Aidan would have to be placed on a cardiopulmonary bypass machine (which means they would completely stop his heart, and have a machine doing the work) to which, he answered NO. THANK GOODNESS!!! We also learned that he would be using the end-to-end anastamosis approach. I described this in an earlier post. Jake and I were hoping and praying that surgery was not the final answer, but the surgeon informed us that if we were to delay surgery and use the balloon angioplasty... it could only make matters worse for Aidan. Here's why....

1.) The balloon will not open the aorta completely

2.) failure to open the aorta means that Aidan would still have high blood pressure

3.) High blood pressure leads to further damage to his precious little heart

4.) In order to increase the aorta to a fully functioning size, it would take MULTIPLE balloon angioplasties (multiple trips to UCLA, multiple time being placed under anesthesia, multiple hospital stays)

5.) If Aidan's blood pressure is not adequately controlled by the time he is 4-5, there is potential for life long use of anti-hypertensive medications

So what was our conclusion?

I don't know. We have accepted the fact that Aidan will need surgery. But do we seek a second/third opinion? Do we wait on a referral to Valley Children's Hospital? Do we trust our instincts and our gut about the surgeon?

Tough Decision...

I never imagined how tough this decision would be. How do you explain to your 2.5 year old about surgery? How do you describe the situation? How do you make the decision? HOW, HOW, HOW? We are speaking to the surgeon again on Monday, we will have a potential surgery date. I will also have spoken to Valley Children's by then and hopefully some of our "how's?" will be answered.