Home from Surgery

Home

Surgery went really, really well and we are home!!! Levi was discharged on Tuesday afternoon, March 25, four days after surgery, which is an amazingly short hospital stay after open heart surgery. We drove home to Oregon the next day. We are so relieved to be on this side of surgery now. Levi is doing well overall and continues to heal.  

Tomorrow Levi has his first post-discharge cardiology appointment here in town. Hopefully everything looks good and the healing is on track. 

We've had some concern about his chest incision. Soon after discharge it appeared redder and more swollen, so I contacted the doctors at Stanford and emailed pictures to double check that it wasn't an infection. We also saw Levi's pediatrician the day after we returned home. At this point they believe it's a reaction to the glue-like substance used on the incision, but we've been instructed to keep a close eye on it and watch for 

A glue-like substance covers the incision

increased redness, swelling, discharge, and fever. If it turns into an infection, it could be very serious. The incision hasn't changed much in the past couple days, but it's still red and irritated looking. I'm very glad to be seeing the cardiologist tomorrow so she can double check everything. Levi will also have the stitches from his chest tubes removed at this appointment.

Other than that, Levi is up and about, eating, drinking, and sleeping pretty well. He can't run, jump, or roughhouse for awhile and so far he's doing pretty well following the rules. No preschool for a few more weeks either. For the most part, he understands that his heart is fixed and his boo-boos are still healing. I've been sleeping on the floor of his room since we arrived home on Wednesday. He has had some nightmares and wakes up saying "Stop it, stop it," and "No, no, no." They seem to be lessening though, so hopefully he'll be back to sleeping well soon.

Recovery in the Hospital

Long and difficult barely begin to describe the last few weeks. Looking back at the surgery and recovery I think the overall experience in the hospital was very traumatizing for Levi. For an almost four year old, he knew enough about what was happening, but didn't understand why people kept "hurting" him. 

He had so many lines and sensors, tape and bandages on him, and they all had to come off, a few each day. He also had two very uncomfortable chest tubes stitched in to help with drainage. He absolutely hated anything sticky being taken off of him. He would panic, screaming and thrashing all around. A number of doctors and nurses were needed to hold him down on several occasions as lines and tubes were removed. He would cry out, "Stop it!" "Later! Later!" or "All done! All done! All done!" and at one point in the midst of tears even said, "I'm not brave." It was horrible to not be able to stop the hurt. He remains very afraid, even of me when I try to lift up his shirt or touch him on his torso. Even cutting his toenails last night sent him into a place of shaking and crying and clinging to me. It's very sad.

Having been through surgery with Levi before, I'd say that this time around was much more difficult for all of us.

Surgery Results

The wonderful news is that the surgery itself was very successful. We spoke with Dr. Hanley after the surgery. All of the severe complex multi-leveled fibromuscular subaortic obstruction was removed, leaving his left ventricular outflow tract wide open. This surgery decreased the pressure gradient significantly. Dr. Hanley was very pleased with how the surgery went and said it went as well as we could have hoped!  

He also explained that given Levi's very deformed aortic valve anatomy, he will definitely need a valve replacement at some point, but hopes it's not for 10 more years. 

Though this surgery was a success, Levi is still left with some remaining mild stenosis, or narrowing, right at the valve. Levi's bicuspid aortic valve, which was previously repaired, is still small and the leaflets are quite thickened and domed.  After addressing the subaortic obstruction, Dr. Hanley spent some time thinning the aortic valve leaflets and opening up the commissure of one of the bicupsid leaflets to give it better motion. 

After surgery, Levi continues to have very mild aortic insufficiency, or leakage, as well as mild aortic stenosis with a mean gradient of 18.  

Thankfully, no valve replacement was needed during this surgery, nor was a pacemaker--two possibilities we had hoped to avoid. So that was great news. Hopefully the subaortic obstructions will not grow back again and the repairs done at this surgery will hold well for a number of years.  

Levi will see his local cardiologist several times in the next few weeks and then we expect the time between visits to lengthen, assuming everything looks stable.

Returning to Normal

The big boys had a great time with Grandma Valerie while we were away. We overlapped at home a few days with my mom and it was really wonderful to get to spend some quality time with her, and for her to get some good time with Levi. It's so nice to be back together as a family. James and I are exhausted, physically and mentally, but we're beginning to catch up on sleep and it feels good to do things around here that are part of our normal day to day routine. The older boys have been on Spring Break and return to school tomorrow.

So many people, those we know and some we don't know, both near and far, have supported us and prayed for us during this journey with Levi.  From the bottom of our hearts, thank you all so much.  We feel loved and supported and it has helped get us through each and every day.  

Love,

Erika, James, Noah, Jacob and Levi

A few more photos:

Recovery in the ICU after the breathing tube was removed

Finally feeling good enough for a ride

Feeling better after the chest tubes were removed.
Discharge day!

Aunt Jani was there every step of the way. She is a rock star!

Walking the halls right before discharge.

Discharged!  Leaving 3 West
four days after open heart surgery. Amazing.

Driving home.

Uncle Jeff stopped by and said hello at the
Ronald McDonald House right after discharge

Home.