Surgery Update

Got paged to call into the operating room. Totally had a heart attack. It wasn't a bad thing though. The doctors all were in there and they looked closely at the aorta and decided that the narrowing is minimal and does not require any rebuilding. The ecco over-exaggerated the narrowing. This makes the procedure for today much less detailed. Still not sure what that means for the long run. Doctor mentioned it was a good thing. They still will need to place the pacemaker.

Pictures Pre-Operation #3 - Norwood 1B

We will keep updating the blog as we go along for this next step in this journey. It is great therapy for Nicole and I.

The DiCarlo Family

Travis was so hungry that he wanted to eat my phone.

Travis' Chest Pre-Op

Travis was mad that they wouldn't let him eat.

Travis was so tired after a long day of paperwork, blood test, and Pre-Op Stuff.

Seriously. He is the cutest.

Team Travis

Off to Surgery and still smiling.

Travis is in surgery now...

.....they took him at 1:40. Surgery should take 5-6 hours. He was happily unaware today, we are thankful for that. We just checked into the McDonald house and ate a little. Now, we wait. Please keep up the prayers!!!

On a lighter note.......Five Things Friday

1. Now that the weather is nicer we have been able to spend more time outside. Travis LOVES looking at trees.....especially when the leaves are swaying in the wind. We decided to take a picture of him and one of his "friends".

2. Travis is such a big boy. This week we went out to dinner and decided we would try a high chair. He did so well in it and LOVED being able to look around at things. He is such the flirt.....he will smile at all the people around and melt their hearts!

3. Last weekend we participated in the Murrieta Relay for Life in honor of my dad. Travis had a good time watching all the activities. Although we didn't stay long.....we had a really great time. I felt inspired by all those people who fight this disease and win!!! Worst thing I heard there is that 1 in 3 people will be diagnosed with cancer in their lifetimes. That is a friggin SCARY statistic!!!!!!

4. Last week when we were trying to get to the bottom of the pulse issue Travis had to have an EKG. He is such a trouper when it comes to these things.....look at that smile!
5. During our "downtime" today we went to Mission Bay park and met up with a couple old friend of Roger's who got to meet Travis for the first time. Nikki and Amanda used to play for Roger when they were younger. Here is a picture of Nikki and Travis. Amanda was sick so she was banished to the outskirts of the blanket and stayed far away from Travis :(. Mission Bay was beautiful and we had a nice visit.

Nothing is ever as it seems...

.....so, we were right.

Back story: Last week we were concerned about Travis and the fact that his monitor was going off at night indicating a low pulse rate. Our cardiologist ordered a 24 Holter study to document the rhythm. We received a call on Monday from him stating that he did see a low rhythm but he was not too concerned. Although this troubled us, we trusted that all was okay.

Fast forward to our pre-op visit today: We were supposed to be at Children's at 10:30 am for lab work, meetings with the surgeons, paperwork, etc. We got there and the Cardiovascular Surgery Nurse Practioner had us go into the conference room and started out with the following...."I hate to be the one to have to tell you this".....our hearts sunk to the floor. Turns out the rhythm problems ARE a problem. In a normal 4 chamber heart they would not be, however, as Travis has a single ventricle and is needing another surgery this spelled bad news to them. Their decision was that Travis will need a permanent pacemaker placed during his surgery. 20% of HLHS kids end up needing one but Travis is a bit different because he is needing one so early. In addition to this shocker the NP goes on to tell us that the Echocardiogram results showed a narrowing of the Aorta which will require additional surgical repair. She was under the impression that we would need to postpone the surgery and have a detailed imaging study done on Monday. However, she wanted to have the surgeon and the cardiologist verify this when they were out of surgery so she asked if we could come back later. We left, stunned at this news. Travis seems so healthy to us and all these bad things are going on with his heart. It is unbelievable!

We were called back to the office around 3:00 to meet with Dr. Lamberti (the surgeon). He went into great detail with us about the two "options". #1 do a catheterization procedure to balloon open the aorta and then go ahead with the Glenn procedure and pacemaker or #2 NOT do the Glenn procedure at this time and go in to repair the aorta surgically, change the shunt to a larger one to accomodate his growth, and then place the pacemaker. He stated that the doctors felt more comfortable with option #2 because the other would be a very difficult surgery and he felt the outcome of #2 would be best for Travis.

What this means:

Instead of the Glenn (which would re-direct his pulmonary artery) he will have a second Norwood procedure, similar to the surgery he had in November. They will take out the smaller shunt and put a larger shunt in that will work for up to 6 more months (at which time he would have the Glenn surgery). This also means that Travis will now need a total of 5 surgeries (2 of which he has already had). Adding another surgery is NOT what we wanted to do but we had to make the best decision for him. This also means that Travis will continue to be "medically fragile" until his Glenn procedure, and unable to be around germs or large groups of people. Dr. L said that he would go ahead and do the "Norwood (part B)" on Monday afternoon. Travis will be in the hospital about 7-10 days depending on any complications/etc.

We asked about how difficult this new surgery will be on him (as the last one was tough) and he said that Travis is a lot bigger and stronger now so he anticipates that the recovery, etc. would not be as tough of a course. So we are praying that it is easier on him that the previous one.

We are having a difficult time swallowing all this. I have to be honest and tell you that this is more than any family should have to go through. We look at our little guy and our hearts break for him and all he has to go through. It is hard to stay positive when there are a million unknowns that we will have to face for the rest of Travis' life. Will he be able to run around and be a normal boy? Will he need more surgeries? Will he have learning disabilities due to his hospitalizations? Will he live to graduate college? Will I get to see him get married? There is nothing more difficult then looking at your baby and not being able to see a clear future for him. I have prayed and prayed and prayed for a miracle. I'm not sure I have the right number because all these complications are not the miracle I have been praying for!!

This weekend will be filled with visits with family, errands and quality Mommy, Daddy, Travis time as we prepare for surgery on Monday. We ask that you please drop down on your knees and say a prayer for us, for Travis' surgery, for Travis' life, and for a miracle!!!!!!!!

Video and Picture Update

As we gear up for surgery next week, Roger and I are spending as much quality time with our boy as we can. It is a scary week for our family and we just ask that you pray for us all!!! We have a pre-op appointment at Rady's on Friday morning and we will get more information about the surgery then. Here are some pics and a cute video of Travis in his peanut M & M outfit.

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Our little Peanut

Crazy after bath hair

Check out my new hairdo...mom cut my hair

Vinny, what are you doing over there?

I love my M & M outfit. I am as sweet as chocolate!

Whatcha doin' daddy?

Skinny little legs

This face melts my heart.....how can you resist?

More Pics of Travis.

http://cid-d843a26bcc8dd2a4.skydrive.live.com/browse.aspx/Travis%204-26?ct=photos&sa=239067413

Calling All Blood Types

Just found out that if some of you "Other" blood types (anything but O+ or O-) donate under Travis' name, they will waive our direct donation fee. Of course your blood won't be used for Travis but someone else could use it! Below is the info......