The time has come!

Tomorrow afternoon we will be heading down to UCLA. Aidan's surgery is scheduled for Tuesday morning at 7 am. Which means, we will have to arrive at the hospital at 5am! Not like time really matters, I haven't slept in weeks. Aidan's surgery will last approximately 3.5-4.5 hours. So we anticipate he will be out of surgery around 11 am. And I also anticipate that I will be a nervous reck until then! Thankfully, my entire family is going to be there at the hospital, so I know this will make things a little bit easier.

Post operatively Aidan will be intubated and sedated for a period of time. The nurse practitioner said he could be intubated until the next morning, but usually they take him off the ventilator about 12 hours after the surgery. He will also have a Central line (these are longer lasting IV's so that they won't be having to change his IV every 2-3 days, plus kids' veins tend to blow easier so having the central line will hopefully prevent some of those issues), an arterial line (this helps to closely monitor his blood pressure), and 1-2 chest tubes (to help drain any excess fluid that might have accumulated around the heart during surgery). Our biggest concern post-operatively is BLOOD PRESSURE. The doctors said he can have what is called "rebound hypertension." This is due to the fact that his heart has been so used to pumping extra hard that even after the blockage is removed, the heart can continue to pump at an abnormal rate/pressure and can lead to even higher BP. They will be closely monitoring his BP during the first few days, and they said there is a chance that if it is not adequately controlled that Aidan will have to be sent home with Blood Pressure medications.... so pray that is not that case!

Picture of a central line: Aidan's line will either be in his jugular or his femoral vein (in his groin area)

The surgery: just to clear things up for you readers out there... it is NOT an open heart surgery! Aidan's heart will not be stopped, cut open, or placed on bypass. This is considered an OPEN CHEST procedure or a thoracotomy. They will enter in through the side/ribs. The doctors have informed us that his is THE MOST PAINFUL procedure because they are having to separate muscle and spread ribs. OUCHIE! Once the surgeon has entered, he will clamp off the aorta and removed the narrowed portion. He will then sew the two ends back together. I have used this picture once before, but it is the best I could find. Below is the address of a youtube video showing a real coarct repair... i won't watch it because it freaks me out, but i thought you guys might want to see...

http://www.youtube.com/watch?v=AGohu9fqKHg

Aidan will likely be in the ICU for 4-5 days and then discharged home. At first I was no okay with the idea of having him in the intensive care unit the whole time, but being in the same unit means the same nurses, doctors, and residents. Knowing that the same team will be taking care of Aidan during his entire stay made me feel much better about the ICU.

I have spent the last few days packing and shopping for the hospital stay. I (like usual) am totally overpacked, but I want to make sure I have everything I could possibly need. I am so nervous that Aidan will be a handful (as he usually is) and I won't be able to keep him still. I asked the nurse if she could keep him on fentanyl for a longer than normal period, because my child is not normal... haha. Aidan is a tough kid, I know he will be just fine. Thanks again for everyones kind words, wishes, and prayers. I will do my best to keep everyone updated during and after the procedure!

Preparing for Surgery

So... Surgery is set for Tuesday, July 27th. We went to UCLA yesterday for Aidan's pre-op appointment. He was such a trooper! He lay perfectly still for his Echo, didn't cry once during his blood draw, and was an angel during his 12 Lead EKG. Logistically, we are prepared for surgery. We have the hotel, a request at the Ronald McDonald house our family, proper insurance coverage, and a good understanding of what to expect during the post operative recovery period. But, the one and most important this that is unprepared... Aidan.

Each time we have gone to the doctor we have told him that we are going to see the doctor and he's going to listen to his heart. We tell him he as a "boo-boo" that needs to be fixed and the doctor needs to look and listen, so he must be very still! After his blood draw yesterday Aidan was so concerned with his "boo-boo" from where they drew the blood. I felt so guilty that this "boo-boo" would be nothing compared to what he will experience in just a few short days. I looked at him and thought to myself... "oh kiddo... if you only knew."

In order to prepare Aidan for the surgery, Jake and I decided that we are going to perform "surgery" on Aidan's Build-a-Bear. We plan to have Aidan place bandages on the bear and help heal his "boo-boos". We are hoping that if he is able to see the "boo-boos" for himself, he will be less shocked when waking up from surgery. I hope this will prepare him and ease a little bit of the guilt I feel about putting him through so much pain!

Thanks again for all your kind words and prayers. I am planning on keeping everyone updated during our stay at the hospital.

Final Decision

We reached our final decision...

Surgery will be Tuesday, July 27 at UCLA.

after many many hours of back and forth, we finally decided that UCLA will be the best place for Aidan to have his surgery.

Pre-op appointment is on Wednesday, July 21st.

July 10-11, 2010: Needing Peace

After our trip to UCLA, I decided that I needed a time-out. There was so much weighing on my mind, and with Aidan being at Jake's for the weekend I thought it was the perfect opportunity to get away and process my thoughts. Saturday morning I drove to Pismo and had some nice, quiet, alone time. I walked on the beach, read my book, and of course consumed 5000 calories from SPLASH Cafe. I thought getting away for the day would miraculously give me peace of mind about my UCLA vs. Valley Children's debate but as my oh so smart sister said to me, "it will not be easy, so don't ever expect that. but just do what you can and trust that you are making the right decision...." And as always, she is right. I know that this will not be easy, so I feel that talking to as many doctors as possible is what I need to do to have peace of mind. I decided to schedule Aidan's surgery for the end of July (most likely July 27 or August 3... I will let everyone know as soon as the date is set), and in the mean time we would travel to Madera for our second opinion from Valley Children's. If we decide that we like Valley over UCLA, we can simply cancel the surgery with UCLA. I fear that I would always question and doubt my decision if I did not seek a second opinion.

Here are a few pictures from my mini-vacation:

Oh... and one other little thing...

P.S... it hurt like heck and I almost passed out. That's A.A. for Aidan Andrew, in case you couldn't tell =)

So where are we today? Tentative surgery date at UCLA: July 27 or August 3. Second opinion at Valley Children's Hospital in Madera: sometime next week. Trip to DISNEYLAND: July 15- July 17! Might as well have some fun in the midst of all this stress!

Once again, thank you for all your kind words and prayers. Love, me.

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.

July 7, 2010: The Bad News Doctor

Yesterday, Aidan had his consultation with a cardiologist from UCLA. We (Jake, my family, and myself) were under the impression that Aidan would not be required to have surgery. From what I have read and researched, typically a coarctation can be repaired using a stent. The doctor inserts a catheter into the femoral artery (leg artery) and threads a balloon/stent to the area, inflates the balloon, places the stent, and bada bing... 30 minutes later the procedure is complete!

Wow, were we misinformed. Due to Aidan's age and size, he is not a candidate for stent placement. Talk about being blindsided. We were all under the impression that this could be corrected with the minimally invasive catheter/stent placement. The cardiologist informed us that he could place a balloon in Aidan's aorta and partially open up the narrowed portion... Let me rephrase, the physician actually said, "it would tear the tissue and essentially weaken that portion of his aorta. Placing him at risk for aneurysm..." So, when someone is telling you that they want to "tear" your son's aorta and place him at risk for an aortic aneurysm, you better believe we all had a collective HELL NO! So where does that leave us?

Surgery.

The second option for treatment is what they call an end-to-end anastomosis. I had trouble finding a good image, but I will do my best to explain. Imagine a water hose that has been pinched shut... what the doctor will do is go in through the side (ribs! ouchie!) and he will cut out the "pinched water hose" and sew the two healthy portions back together.

So what does surgery entail? I am not sure exactly. According to James & Ashwill (2007)the procedure is called a "thoracotomy" which means they will make an incision along the ribs and separate the muscle so they can enter through the side of the body. This would mean, much much more pain and a longer hospital stay. But there is more... along with the coarctation, Aidan also has Mitral Valve Stenosis. Or, at least they think he does. He needs to have another diagnostic test to determine how extensive the valve damage. IF, the damage is severe... this would mean Aidan would need an actual open heart procedure. We are praying that is not the case!

Tomorrow... Jake and I are taking Aidan to UCLA to meet with a cardiothoracic surgeon. We are also considering obtaining a second opinion from Valley Children's Hospital in Madera. Wish us luck! Hi-ho, hi-ho... off to UCLA we go!

June 10, 2010: The Diagnosis

Let's get everyone up to date:

It began with a persistent cough... which lead to a chest X-ray... which showed an enlarged heart... which we thought would be no big deal... which lead us to the cardiologist... who gave us the diagnosis. Coarctation of the Aorta.

Coarctation of the Aorta is a narrowing of the aorta (the largest vessel in our bodies). Due to the narrowed portion, the heart must work harder to pump blood to our bodies. Over time, the heart will begin to grow in order to compensate for the added work. This explains why Aidan's chest X-ray was showing that his heart was enlarged. Aidan had been born with the condition, but it was not immediately detected because his symptoms are not severe.

Some of the symptoms Aidan had been experiencing were: headaches (he would tell us "light off, light off... it hurts my eyes" which we now believe it was his 2 year old way of telling us he had a headache), shortness of breath (our doctor thought he may have "activity induced asthma" but the heart defect better explains Aidan's coughing during play), high blood pressure (Aidan's blood pressure has been at 140/75; a normal 2 year old's blood pressure should be 95/65), lethargy (he has/had been taking 3-4 hour naps... i feel guilty now for being excited that i had a kid who napped so well!), and diaphoresis/sweating.

Now that you all have a little bit of background information, I am going to get working on updating you all on where we are as of TODAY. Please be patient, I am new at this and I have a fear of other people reading my writing. =)