CARDIOLOGIST APPOINTMENT - ALMOST NINE MONTHS OLD

Levi will be nine months old on Friday.

Today Levi had another appointment with his cardiologist.  The bottom line is his tests showed that everything is about the same as his last appointment four weeks ago.  That's relatively good.  Levi's aortic valve is still stenotic, still leaking a lot, his ascending aorta is still significantly dilated (aneurysm), and his left ventricle is mildly dilated, BUT it's not worse than four weeks ago.

James asked Dr. Tajchman if she thought Levi would need surgery before the year is out, and she said yes.  So it's coming, we just still don't know exactly when.  She wants to see Levi every 3-4 weeks for echos.  Once his left ventricle starts to dilate more, then we'll schedule surgery.

Dr. Tajchman is still waiting to hear back from Dr. Hanley at Stanford.  I was really hoping to hear that she had already heard from him.  Once she does, she'll give us her opinion on the best course of treatment/surgery.  Probably a Ross Procedure, but repairing the valve is not totally off the table yet.  The Ross would take care of replacing his diseased aortic valve as well as the dilated ascending aorta.  If a valve repair was attempted, they would also need to replace the dilated aorta, and I'm not sure what type of material would be used for that.  No matter what, Levi will still need several open heart surgeries during his childhood as he continues to grow.

At this point, we continue to move along with our plan of gathering information from hospitals/surgeons.  We still plan on meeting with Dr. Starnes at CHLA at the end of this month.  We eagerly await hearing from Dr. Hanley, and Dr. Tajchman is waiting to hear a few more details from Boston.  So, not much new information today.  As much as we aren't looking forward to this surgery, we do look forward to knowing what the plan for surgery will be and who the surgeon will be.

On a positive note, in talking with Dr. Tajchman about open heart surgery, she said kids usually bounce back really quickly.  Maybe a week to ten days in the hospital, and then fully healed in about six weeks.  Assuming all goes well, he should be able to run, play, and ride bikes as he gets older, just like other kids.  She said he may even be able to play sports if he wants, depending on how his heart is doing at that point in time.

Meanwhile, Levi is still doing really well at home, crawling and pulling up on everything.  You'd never know so much was going on with his little heart.

PRELIMINARY CT RESULTS

We drove three hours to Portland yesterday and had Levi's CT scan at OHSU early this morning.  We really wanted to know the results before we got back on the road to Bend, so that we knew there was no emergency.

Not long after the CT was completed, the radiologist came into the recovery room where Levi was beginning to wake up, and was kind enough to give us the preliminary results.  She said she didn't see an aortic dissection, which is wonderful news!  She took another look at the original CT back in June, which she also read back then, and compared it to today's.  She believes it was probably a thrombus (blood clot) that was there before, but that it's since resolved itself.  The doctor pulled up the images and showed them to us too, which was really helpful.  We're so thankful for her taking the time to talk to us and explain everything.

waiting for his turn 

The radiologist is going to study the scans even more, send the results to Levi's cardiologist in Bend, and call her too.  Unless something changes, we expect to hear more about the CT results at Levi's next cardiology/echo appointment on March 15.

One downside about today's appointment was that the doctor had a hard time starting Levi's IV.  The first one worked, but once he was brought into the CT room and the sedative was put in, the IV didn't work.  So, they tried Levi's other arm.  That didn't work either, so they tried his foot and finally got it to work.  Poor Levi was miserable.  We arrived at 6:50 am and didn't leave till 11:00 am and Levi was exhausted by the end of it all.  He slept almost the whole car ride home.

in his cute hospital gown just before IV and sedation

In addition to the good results we had another bright spot in our whirlwind trip.  When we started driving, we still didn't know where we would be staying.  About a half hour into the drive we got a call saying that we weren't able to get into the Ronald McDonald House (RMH) next to OHSU because it was full, but we did get in to the East RMH a few miles away.  Before Levi was born, I didn't really know much about these houses.  They are amazing.  We were warmly welcomed, shown to a beautiful, peaceful room, and had a hot dinner provided by community members.  We had a room at RMH when Levi was first born too.  With all the craziness and emotions surrounding a child with special medical needs, these houses are a such refuge and provide hope and needed rest.  So many families and children are supported by these very special houses.  We are thankful and definitely want to give back to RMH at some point too.

                               

                          Ronald McDonald House East Portland

Our relaxing RMH room

It's really, really good to be home again.  It helped tremendously to know that Noah and Jacob were so well taken care of by our friends while we were away.  Thank you everyone for all of your support and prayers!!!!

POSSIBLE AORTIC DISSECTION

Update: Sunday, 11:00 am

James is now coming with me to Portland for Levi's scan!!!  Our dear neighbor offered to stay with the boys overnight so James could come too!


Friday, 12:45 pm

It's amazing how much things can change with one little phone call.

I had gone to a kindergarten informational meeting last night.  As I was leaving at about 7:30 pm, I realized my cell phone was buzzing and just missed the call.  I listened to the message in the car and it was Levi's cardiologist.  She said she had heard back from Boston and would try our home phone.

So I raced home and when I walked in James was still on the phone with her.  When he was finished, he handed the phone over to me and Dr. Tajchman filled me in.

Boston had called with both good and bad news.  The good news is that they think they can repair Levi's aortic valve (repair doesn't mean fix in this case, but it could buy him a few more years before a valve replacement is needed).

The bad news is that after reviewing all of Levi's echos and the one CT scan done his first week of life, they think that Levi might have a chronic aortic dissection.  Aortic dissection is a condition in which there is bleeding into and along the wall of the aorta (the major artery from the heart).  This most often occurs because of a tear or damage to the inner wall of the artery.  This is very dangerous and can lead to a rupture and death.  You may remember that this was mentioned back in the very beginning, when Levi was a few days old and in the NICU at OHSU in Portland.  It's believed that the wire used during the balloon dilation when he was first born may have caused an injury in his ascending aorta.  At that time Levi had a CT angiogram done to see if the wavy flap seen on the echos was a dissection or not.  The results came back that it wasn't a dissection (great news at the time), but that instead it may be an intimal tear that could eventually heal itself or a thrombus.  Still not good, but better than a dissection.  Since so much time has passed there has been less concern about this, until now.

After reviewing everything, Boston has reason to believe that it may indeed be an aortic dissection.  Levi's records were reviewed by a team of doctors in Boston, including highly regarded surgeons, Dr. Pedro del Nido and Dr. Christopher Baird.  Dr. del Nido is "the" man over there and one of the best in the world.  They want Levi to have another CT done soon to hopefully give a more definitive diagnosis.  If it's a dissection, that may mean he needs to have surgery to repair that as well as his valve sooner rather than later.  We are really, really hoping this is not a dissection!

So the next step is the CT.  Unfortunately, we need to drive to OHSU in Portland for this, as his cardiologist thinks this is the best facility for this test.

I just received final confirmation that he is scheduled for check-in at 7:00 am on Wednesday, March 9, with sedation at 8:00 am and the scan at 8:30 am.  Food and milk restrictions ahead of time, which is never fun.  At this point the plan is for Levi and me to drive over on Tuesday afternoon, hopefully stay at the Ronald McDonald House next to the hospital, and then have the CT done first thing the next morning and drive home that afternoon.

Once the results are in, we'll know much more and our cardiologist will forward the images to Boston, Stanford, and LA.  Then we'll see what comes next.  I'll update the blog as we learn more.

We're just so sad that our sweet little guy has to go through all of this.  Thinking about open heart surgery scares us.  We've known that it would come to this, but the reality of it is hitting much harder right now.  My whole body aches for Levi.  I didn't sleep much last night.  We also still need to tell the other boys.  They don't know about Levi's condition.  Because of their young ages, we've decided to tell them once things start moving in the direction of an intervention being needed.  I guess that might be soon.

Thank you for all of your prayers and offers of support and help.  That means so much to us.  We pray God will protect and heal our little Levi.  We thank Him for His faithfulness and pray for His perfect will to be done, whatever it may be.  Levi's life has a purpose and a bigger plan than we know.  We are learning to take each day as it comes and know we are not walking this alone.  Please pray for peace and wisdom as we continue to navigate through all the unknowns.

Now I'm off to a kindergarten school tour.  It's weird to still have the normal day to day things happening when so much more is on my mind.

I'll keep you posted.

Love,
Erika

CRAWLING AND SCHEDULE CHANGE

Levi's officially mobile.  He's crawling everywhere and can get his own toys, which is great!

I received a phone call yesterday from CHLA and the consultation with Dr. Starnes needed to be moved to March 28 instead of the 31st.  I just hope it doesn't get changed again since we're only down there for a short amount of time.  The good news is that CHLA did confirm our insurance coverage and it's officially an in-network provider, if we decide to go there for surgery.  So our coverage is the same down there as it is in Oregon--a huge plus!

We're all healthy again and doing well.  I'm sure the next few weeks will speed by and we'll be in California before we know it!

Levi's on his special quilt

heading out for our anniversary dinner

happy boy!

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