CARDIOLOGIST APPOINTMENT - SOME CHANGES - ALMOST EIGHT MONTHS OLD

On Friday, Levi turns eight months old!

After waking up to a foot of new snow this morning, Levi and I made a slippery trip across town to see his cardiologist for a routine check-up.  He had his vitals checked, an EKG, and an echo.  Dr. Tajchman reviewed the findings and gave me the latest update on how Levi's heart is doing.  The good news is that the aortic stenosis has not progressed since he was last seen in December.  The pressure gradient is about the same.

The bad news is that the aortic valve regurgitation (leakage) is getting worse.  It's now moderate-severe.  In December it was moderate.  Because Levi's valve cannot fully close, the backflow of blood with each heartbeat stretches out the left ventricle, causing it to dilate over time.  Dr. Tajchman said Levi has mild dilation at this time, but it is a little more than his last appointment.  Since his stenosis seems to be holding steady, it appears that it's this dilation that's going to cause Levi to need heart surgery.  We've never known exactly when he'd need surgery, but if this leakage and dilation continue to increase, it might be sooner rather than later.


Dr. Tajchman wants to see Levi again in one month for another echo.  March 15.  Lately we've been on a two to three month schedule, so the fact that she wants to see him again in only four weeks makes me nervous.  If the dilation continues to increase, she'll refer Levi for surgery.

Now the question of where to go for surgery is becoming a big one.  In talking to Levi's cardiologist today, we're now mainly looking at Dr. Vaughn Starnes at Children's Hospital Los Angeles and Dr. Frank Hanley at Lucile Packard Children's Hospital at Stanford.  This would be for the Ross Procedure (taking out his bad aortic valve and replacing it with his own pulmonary valve.  Then a replacement valve for the pulmonary valve would be inserted).  You may remember in a previous post I talked about a surgeon in Portland who recommended trying a new type of aortic valve repair on Levi.  I finally spoke with Levi's cardiologist about it and she didn't really think he'd be a good candidate for it for a variety of reasons.  This is more or less what James and I had recently concluded as well.

So, now what?  Dr. Tajchman will contact the two surgeons and see what they think about Levi's case.  She recommends that we try to meet with both surgeons, so we may be making a trip to California in the near future.  I've also asked her to see if she can find out any information from Boston Children's, so that we have yet another opinion (they have a new valve repair center and I'd like to hear what they have to say).

I need to start making phone calls to the possible hospitals as well.  It looks like both California hospitals are on our insurance provider list, which is wonderful.  But I need to double check all the details to see exactly what's covered.

So needless to say, today was a bit exhausting mentally.  Levi still appears to be doing well and is asymptomatic.  This is good, but it also makes it hard to believe he really will need major open heart surgery.  We're trying to not be anxious about it all, but to be still, knowing that God will walk with us through it all.  He will work all these things for His greater good.  We'd really appreciate your prayers during this time of waiting.


On a more positive note, we had a wonderful time visiting with my brother, Steve, and nephew, Luke, this past week.  They flew up from California and spent five days with us.  The boys LOVED playing with their cousin and uncle.  We played at the park, rode bikes and scooters, went tubing, Luke and Noah had a "sleepover", we visited the High Desert Museum, celebrated Valentine's Day, and hung out and played some more.  It was a sweet time together.  They also met Levi for the first time.  We really treasure the times we get to spend with family.

I'm kind of hoping tomorrow is a "snow day" again.  I just feel  like sitting around the house in my PJs and relaxing (that is, as much as I can with these three boys!).