Friday, April 30, 2010

Nothing is ever as it seems..., 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!!!!!!!!


  1. You have my prayers! You have a precious, beautiful, STRONG son. I have prayed for Travis before and I will continue to do so as he faces his next surgery. I will ask God to be with him and with the doctors to guide their hands and help heal Travis' heart.
    All my love, Bree

  2. I know a setback like this was the last thing you ever expected. Supposedly God never gives us more than we can handle. Only time will tell. Stay strong. Travis will grow stronger with each day and each challenge. I will pray for his strength. I'll just remember that little smile while swinging away!!

  3. Hi Nicole and Roger,

    I'm sending all of my prayers to little Travis. I know it's a time that is so very difficult to go through... as you said, no family should ever have to go through this. My heart goes out to all of you.
    I am praying, I'm sending bit hugs.
    (Ryan's high school teacher)

  4. I will be praying and have asked a huge group of my family and friends to pray too. He will be in good hands tomorrow. I love you all and send you lots of hugs. Be strong.

  5. Travis will do great! They are so resilient at this age. We just brought our daughter home from Boston two weeks ago; at 4.5 months, she underwent a baloon dialation of her aortic arch in the cath lab and two days later went to the OR for her Glenn. She was discharged SIX DAYS later. . . we felt like she was ready before we were! We talk about and think of Travis often; good luck this week.

    Hannah and Patrick Barrett

  6. Your family is in my prayers. Looking forward to your next update... stay strong!