Another OHS in Nic's future

Ok, sorry to keep you waiting...we talked to Dr. Hanley on Friday morning and he said that Nicholas' gradient is still right around 30mmHg.  Even though Dr. Peng already told us this, I was hoping (knowing the truth) that Dr. Hanley knew something that she didn't.  It was already kind of confusing because at all of Nic's cardiology appointments with his primary cardiologist here, we thought that his gradient was much higher.  At his last appointment with Dr Wright, they told us it was around 60mmHg.  So I'm not sure how that happened, maybe that ultrasound is less reliable than heart cath?  Well whatever the case, we are still at square one.  So.....

Dr. Hanley gave us two options:

1.  We leave the band where it is.  It will take YEARS for the gradient to get to the point where Nicholas could have his double switch.  Basically, the band would stay at the diameter it currently is, and when Nicholas grows, it will automatically tighten his pulmonary artery because the artery will grow, but the band will not.  But he said this will take 3-5 years, and when the LV reaches the ideal pressure gradient, we would have to wait another 6 months to 1 year to make sure the heart can sustain those pressures.  So in other words, Nicholas would be at least 7-9 years old before his big operation. 

2.  We do another open heart surgery to tighten the PA Band.  This would potentially be the last time the tightening would take place prior to the Double Switch.  Dr. Hanley now knows that the gradient they tried to impose on his heart in December was too weak, so now he can be a little more aggressive to restrict the flow and make Nicholas' LV work harder and get stronger.  Hopefully this will do the trick, but it is always possible that Nicholas would need yet another PA Band tightening to fully prepare his heart for the double switch.

We decided that we are going to go with the second option.  It has always been really important to me that Nicholas be "done" by the time he starts school.  I really don't see the purpose of prolonging the inevitable.  I want my boy to be able to run and play baseball and ride his bike without being so winded. I also don't want him to feel "different" when he goes to school because his heart can't keep up with the other kids.  Not to mention the amount of school he would miss if we wait.

It will be sometime within the next month, maybe even a few weeks.  On Friday, we picked July 1st to be the big day, but Dr. Hanley's office called later that afternoon and cancelled it because they said they accidentally gave it to a patient the day before, so now I am waiting for his office manager to call me tomorrow to let me know when we will actually be doing it.  

More to come when I know what the day will be.... 

A Bit Disappointed

Well we went to Stanford last week and went through the process of checking Nicholas' heart.  We met with the team on Wednesday for pre-op, and then on Thursday Nicholas had an MRI and cardiac catheter.  The results were disappointing.  We don't have the MRI report yet, but we can presume that not much has changed since before his PA Band was placed in December.  The heart cath measured Nicholas' gradient at around 30 mmHg.  This is almost exactly where he started.  We haven't spoken to Dr. Hanley, because he was in back-to-back surgeries and we checked out of the hospital before he was out of surgery.  But we have a phone consultation set up for this Friday and we will have the full report and he will give us his recommendation for the next step.  Dr Peng, who has done both of Nic's heart cath procedures, talked with us and she speculates that Dr. Hanley will want to re-band sooner rather than later.  So I think we will probably be looking at another open heart surgery sometime this summer. 




I will keep you posted......

Nicholas sleeping soundly after a long, busy day of testing.

Nicholas with Clarice, ready to go home