Post Cardiac Catheterization / Consult with Surgeon Date Set for Feb 26

To those who are not on Facebook I want to apologize for the lack of blog updates surrounding Levi's heart catheterization two weeks ago.  I posted a bunch of updates on FB, but never got around to updating my blog.  So sorry!

I also kept hoping to post a definitive answer about when surgery is needed, but it still hasn't come. More hurry up and wait. But we are one step closer!



Cardiac Catheterization

James and Levi waiting for procedure time

So, here's a summary of how Levi's cath went.  Other than the super crazy drive to and from OHSU in Portland through a massive snow storm, everything went as planned.  Levi's heart catheterization on Feb 7 even got bumped up to an early morning time, which was great. This meant Levi could be released the same day and didn't have to spend the night in the hospital.

We were told that the heart catheterization itself went smoothly--for which we're very thankful!  When Levi was returned to us in his recovery room, he continued to sleep for about an hour and a half. 

just arriving in the recovery room

But then Levi had a difficult time coming out of the sedation and was very agitated, thrashing around, crying, and inconsolable.  I believe the nurses and doctors called it emergence delirium.  The opposite of the quiet, still, flat-on-his-back six-hour recovery that was desired after his cath, so as to not cause major bleeding or complications from the femoral artery and vein in the groin which were both accessed during the procedure. Fortunately, the pressure bandage ended up being enough to keep that under control, because Levi was certainly not helping by moving all over the place.  

He did end up getting some more Versed and then morphine through his IV to try to calm him down and help him relax.  It helped a little, but in the end it was a very long and difficult afternoon/evening.   We checked in at 7 am and were discharged at 7 pm.  Levi was exhausted and went right to sleep as soon as we got back to the apartment where we were staying.  He was much more himself the next day and totally back to normal the day after that.

The pedestrian skybridge at OHSU

While in the recovery unit at the hospital, we had hoped to debrief with the interventional cardiologist who performed the heart catheterization, but weren't able to talk to her because she came by right as Levi was waking up and screaming.  I do have a copy of her cath report though and have since spoken with our local cardiologist about it by phone.  

Basically, the cath results show that Levi's subaortic obstruction is severe and his left ventricle now has moderate hypertrophy or thickening. The previously repaired aortic valve itself seems to holding up pretty decently though, which hopefully means he can keep it for now.  But the subaortic obstructions in his left ventricular outflow tract will need to be removed. So we're pretty sure surgery will need to be in the next few months, but are still awaiting final confirmation.  Records have been sent off to LPCH (Stanford) and Boston.

Date Set for Consult with Surgeon

"Mom, look what I built!"

I did get a call from LPCH yesterday and Levi is on their cardiac conference schedule for Wed, Feb 26.  A team of cardiologists and surgeons will meet to discuss Levi's case and review his recent echo and cath imaging. Immediately following that morning's meeting, we are scheduled to have a phone consult with Levi's surgeon, Dr. Hanley.  So, by next Wednesday we should finally have more answers about the timing for surgery and what will need to be done.  We'll also hopefully hear from Boston soon too.  Though we're confident Dr. Hanley will perform Levi's surgery, we want to have a second opinion confirming everything before handing our son over for such a big surgery.

In the meantime, Levi is doing well.  He's a super active little guy who is exceptionally coordinated and always on the go--he especially loves jumping from one piece of furniture to the next and flipping upside down. Or jumping all the way up the stairs with both feet together. It makes me tired just watching!  Then at times I think he may be a little more tired than normal and wonder if it's heart related, but it's hard to tell.

taking a spin on our neighbor's sled

As much as I fear and dread Levi's next open heart surgery, I also want him to have as healthy a heart as possible.  I don't like knowing that it's working so hard right now to pump blood out to the rest of his body.  I don't like knowing that it's just getting worse each day.  I look forward to getting this taken care of so that Levi can heal and move on.  His heart won't be fixed for good, or normal, but it'll be in the best possible shape so he can hopefully get a good number of years out of it before needing another surgery.

My thoughts are again consumed by Levi's heart right now--getting the best care, preparing the family, planning, double checking health insurance and medical bills, gathering records, and reading up as much as I can on this frustrating subaortic stenosis we're dealing with again.  

when life gives you tons of snow, take a ride
around the neighborhood in style

But I can say that though it's exceptionally hard at times to have a child with a serious chronic health condition, it does get a little easier.  Somehow it becomes more "normal" and I cope more efficiently, if that makes sense.  Levi's first year of life was such a blur and my expectations of what life would be like were turned upside down.  The unknown and this new world of CHDs that we'd just been thrown into were incredibly frightening.  At the time I couldn't imagine it getting easier or ever normalizing.  But somehow it has.  It's still very hard, but it's more "normal" now, even though I'd never wish it on anyone. We are so thankful for our amazing little guy and love him so much.

I want to thank all who have come beside us on this journey, especially our friends and family who have helped in the last couple months, as this latest chapter is being written. From childcare and places to stay, to playdates, hugs, listening ears, and coffee, to words of encouragement and an amazing amount of prayers, THANK YOU from the bottom of our hearts. You have helped lighten our load more than you know and we are forever grateful.




My mom shared this short piece with me when Levi was born and it rings true for raising a child with congenital heart defects too.

****WELCOME TO HOLLAND****

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.  

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after

you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. 

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

Some other recent family photos:

Valentine's Day

Jacob's creation for 100's Day at school

Sammy, our big kitten

Noah and Jacob up at Mt. Bachelor

a lazy weekend morning