CONSULTATION - CALIFORNIA HERE WE COME!

A few days ago I received a phone call from Levi's cardiologist.  She had contacted Children's Hospital Los Angeles, Stanford, and Boston to inquire about obtaining opinions on treatment for Levi.  Levi's records are being sent to each of those hospitals for review.

Here's where we stand with each hospital:

1.  I just got in touch with CHLA and on March 31 we have a consultation with pediatric cardiothoracic surgeon Dr. Vaughn Starnes.  We'll bring Levi in to be examined, but don't expect them to run any tests at this point.  Dr. Starnes will have looked at Levi's most recent echos, EKGs, and reports.  We look forward to hearing what he thinks about Levi's case.

2.  Dr. Frank Hanley at Stanford Children's said that after he reviews Levi's echos and records he'd be happy to give us a call and let us know what he thinks.

3.  Boston Children's will also review Levi's echos and records and will get back to us with an opinion.  When Levi's cardiologist called Boston, they said that in children born with aortic stenosis who have had a balloon dilation procedure and now have regurgitation, they prefer to do valve repairs using pericardial patches if at all possible.  At five years post-surgery, the freedom from re-operation is 70%.  That falls to 50% after five years.  It's all very valve specific, so we'll see if they think Levi's a candidate.  Levi's cardiologist said that a valve repair doesn't really address the two other issues Levi has besides his diseased valve -- a dilated aorta, and the intimal flap in the aorta that's been there since the original balloon procedure.

So at this point, we wait for two of the opinions and make plans for the LA consultation on March 31.  We also still have Levi's regular cardiologist appointment on March 15.

We're looking forward to a California visit.  This is the first time we've ever driven down with all the kids.  It will be a ton of driving, but we're looking forward to making it a family vacation of sorts.  We plan on being gone a total of nine days and will spend time in Coronado, OC, LA, and if we can somehow squeeze it in, Santa Barbara.  There's also talk of James and Noah sneaking in a Disneyland trip too.  James also has two days of business meetings in LA while we're there, so he'll be staying in downtown LA for a couple nights.  Hmm, I'm not so sure how we're going to fit everything in yet.  There are so many people we want to see and things we want to do!

Levi's been on the move for a week or two now.  He gets around by pivoting, rolling, and rocking.  Until today.  He started crawling.  Just a couple strides forward, but traditional crawling nonetheless. Time to baby proof again.  He's such a cutie though and we just love him so much!

A package in yesterday's mail made my whole week.  My Aunt Jani made Levi the sweetest, softest, most cuddly quilt ever.  It's so incredibly awesome and meaningful.  I know it will be a special comfort for Levi for years to come.  She even sewed in a pocket from my Grandpa Harry's pajama shirt.  He passed away last year, so you can imagine how much this means to me and how much it will mean to Levi as he gets older.

Tomorrow is our ten year anniversary.  Ten years!!!  I can hardly believe it.  What an amazing journey this has been.  I'm incredibly blessed to have James as my husband and partner in life.  He is the best of the best.  He is my rock, so loving, so solid, so steady, so gentle.  I also love, love, love that my three boys have such an amazing dad and role model to look up to.

 Cheers!

February 24, 2001

10 years later

Grandpa Harry

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!).

Congenital Heart Defects Awareness Week: February 7 - 14, 2011

Did anyone see the cute Super Bowl Volkswagen ad with the little boy behind the Darth Vader mask?  Six-year-old Max Page suffers from a serious congenital heart defect (CHD) known as Tetralogy of Fallot.  He had his first surgery at three months old and then had a pacemaker implanted soon after.


In just the past month, two friends of mine have had their precious little babies diagnosed with congenital heart defects.  


Just yesterday James and I read yet another article in the newspaper about an Oregon student athlete who died suddenly during a wrestling match due to an undiagnosed congenital heart defect.  


Today begins CHD Awareness Week, an annual awareness effort to help educate the public about congenital heart defects.  


I want to take a moment to share some important facts:

• Congenital heart defects are the #1 birth defect and the #1 cause of birth defect related deaths.

• At least 9 out of every 1,000 infants born each year have a congenital heart defect. That’s almost 1 out of every 100 infants. 

• Sometimes the defect is so mild that there are no outward symptoms. In other cases, it’s so severe that the newborn becomes ill soon after birth. In still other cases, signs and symptoms occur only in later childhood or early adulthood.

• In the United States, about 36,000 children are born with a heart defect each year. Most of these children can be helped by surgery even if the defect is severe.  

• 1.3 million Americans alive today have some form of congenital heart defect.  About one-half of those are under age 25. 

         (American Heart Association 2010)

• Despite the fact that CHDs affect so many families in the US, a relatively small amount of funding is currently available for patient educational services, research, and support.

It never occurred to James and me that our baby could be born with a heart defect.  But we were that 1%.  I had never heard of the term CHD before.  Now I know it all too well.  Thankfully Levi's critical aortic stenosis was found on day two of life and he could receive the emergency care he needed to live.  I'm beyond thankful that doctors did the extra testing on him to figure out what was causing his murmur, instead of being sent home thinking it was just an innocent murmur that was "nothing to worry about."  

We hope that greater public awareness will result in improved early diagnosis, more support and resources for CHD families, and additional funding for scientific research resulting in new and improved treatment options.

  

Levi's first ride in the backpack