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.

Surgery Day (updated throughout the day)

1:45 PM - Update #4 - Surgery Done!
Just met with Dr Hanley. Surgery went really well!! He came off the heart and lung machine perfectly. We'll see Levi in about an hour. 

12:45 PM - Update #3 - Mid-Surgery
Just received an update from the OR.  Dr. Hanley removed the blockages below the valve, no Ross. Good news so far! Levi is still in surgery and doing well.

11:00 AM - Update #2

Dr. Hanley stopped by at 10:30am and said he's just about to go in the OR and start on Levi. The plan is to remove the blockages below the aortic valve.  Once this is complete, Levi's heart will be restarted and hopefully this sufficiently lowers the pressure gradient. If not, and there is still blockage, but at the ring of the valve, then he will perform a Ross procedure (two valve replacements) to relieve the pressure.  He doesn't expect to have to do this based on previous imaging, but he said there is a chance.  He reassured us that he's done hundreds of Ross procedures.  If all goes well and no Ross is needed, he may be done with his part of the surgery around 1:30pm.  

I'll continue to post updates as I know more.

10:10 AM - Update #1

Levi was wheeled into the OR at about 8am and as far as we know is still being prepped/opened. We're still waiting for Dr Hanley to stop by on his way to the surgery. Levi was given Versed while we were with him and was rolled away feeling good and a little loopy. Still hard to say, "We'll see you in a little while." Thankful to pass the time with James and my dear Aunt Jani.

Tomorrow's Surgery Schedule

pre-op

Today's long day of pre-op is done. Levi is all set for tomorrow's surgery. He's first on the schedule. Check-in at 6:15am. The anesthesia team will take him to the OR around 7:30am and we should see him again around 3pm after he's settled into the cardiovascular ICU. We're all hanging in there. Tomorrow will be tough. Please pray for our sweet boy and the whole medical team in charge of his care.

practicing for tomorrow

LPCH

Pre-Op Tomorrow

Levi is healthy and we've made it down to California.  Those are two big checks off my pre-surgery list!  

Tomorrow, Levi's day of pre-op appointments starts at 7:30am.  It will include an EKG and echo, followed by chest x-rays and blood work.  Then we'll meet with one of the physician assistants who will be in the surgery, a member of the anesthesia team, as well as a child life specialist who will help prepare Levi for what's ahead. 

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The boys and I spent a lovely afternoon in Shevlin Park before we had to leave town.

Noah, Jacob, and Levi

Levi's version of "bunny ears"

Ten Days Before Surgery

Levi's preschool class made this sweet sign for him

Treading time. That's what comes to mind as I sit here in my house with Levi this morning.  It's like treading water. Just trying to stay afloat during this time before surgery. We're basically home. In the house, in the backyard, or maybe out front playing, but we can't venture out to the usual places...preschool, speech class, the grocery store, church, playing with friends.

Wake up, wash your hands, eat, wash your hands, play with brothers, wash your hands, and wash them again. Noah sneezed a couple times yesterday. Stay 10 feet away from your brother and wash your hands...again...and again. Noah, maybe read a book in your room?

I heard Levi cough a few times through the baby monitor early this morning. My stomach dropped. He seems fine now though. Last night I felt a heavy tingle in my chest, felt like I was getting sick. Panic set in. I can't be sick for this either. But I feel okay this morning.

I know this all sounds like I'm totally crazy. Overly paranoid. At least I recognize that, right? I wish I wasn't feeling this way. But it's me right now and it makes me want to cry. I want this surgery over so badly. I don't want to live with this always in the background. If Levi gets sick and we have to reschedule for a couple months down the road, I don't know what I'd do. When would I start trying to keep him healthy again? Traveling out of state makes it that much harder. So much planning and coordinating goes into a trip like this.

It's starting to warm up a little outside, the days are getting longer, people are coming out of hibernation. I just want to sit on our front porch in the rocking chair, while Levi and the boys run and bike around with the neighborhood kids. But instead, I have to tell the little kids who want to play, that they can't play with Levi right now. Just in case. And that doesn't make sense to them, or Levi.  So we come back inside.  

I feel like that overprotective parent.  It's really hard and I question if it's the right thing. But I have to err on the side of caution. Right? I remind myself that Levi's two doctors also recommend keeping Levi away from others and places where he might pick something up. But it's really hard.

Our departure date is only one week from today. Our trip to California doesn't sound too far away, but it feels like a million miles today. I wish we could fast forward and leave now.

We might end up driving to CA. Not what we planned, but plans change. So I'm trying to roll with that too. We also won't know about where we're staying till right before we get there. We're really, really hoping we'll be able to stay in the Ronald McDonald House right by the hospital, but won't know until the day before. It really is an amazing home-away-from-home for families whose kids are in the hospital.

I could use prayers for peace, patience, and health today, and this week. This is hard and I know it's only going to get much harder in the days and weeks to come.

Ready, Set, Go! Surgery Scheduled

Surgery Date

Levi's open heart surgery is scheduled for Friday, March 21, 2014.  Just under three weeks away!  We will fly down to CA on Tuesday, March 18, then Levi's day of pre-op appointments begins at 7:30 am on Thursday, March 20.  Surgery is sometime on Friday, March 21.  We don't know just yet if Levi is the first or second case of the day.

As much as we're dreading another surgery, and this is all happening so quickly, the stress and nerves will only be stretched for weeks and not months.  It's hard waiting and anticipating surgery.  I've switched into planning mode and am working on all the details of getting us down there and back, lodging, packing for a hospital stay, learning about what to expect post surgery, and most importantly, keeping Levi healthy before surgery.

Staying Healthy

Levi is on the tail end of a cold right now. Not too bad, just a runny nose and cough. I expect that to finish up in the next week or so. Then hopefully he'll stay healthy for that next 1.5 weeks before we leave.  

So, we're going on a bit of a "health lockdown" around here.  I spoke with Levi's pediatrician last night and she agreed that in order to lessen the chance of Levi picking up other viruses, he won't attend preschool until after surgery.  And even then, I still need to ask his cardiologist how many weeks post surgery he'll be out of school due to recovery restrictions.  Levi will have lots of mommy-time at home in the weeks to come! :)

I can't keep the two older boys out of school, so hopefully they won't bring any illnesses home.  We'll be doing lots of hand washing and sanitizing around here.  If Levi does get sick, we'd need to reschedule surgery which would be especially difficult since we're traveling out of state.

My wonderful mom will be flying up to OR to stay at home with the two big boys.  At their young ages, we think it's best if they are able to stay at home and in their same routines. We'll miss them so much. Recovery in the hospital is typically 7-10 days, if there are no complications.  Last time we went home on Day 6. 

What the Surgeon Said

The little girl next door came over the other day
and asked if she could do a project with Levi.
They made their own crayon hearts! So sweet.

For those of you who are interested in more of the details surrounding the surgery, read on. 

James and I spoke by phone with Dr. Hanley, Levi's surgeon at LPCH this week. We both took notes.  Here are some bullet points from our conversation.

• Levi's blockage is moderate to severe below the valve.  He needs surgery.
• What is the blockage? A membrane close to the valve and a ridge a little farther down, thickened muscle, and scar tissue.
• The previously repaired aortic valve itself is doing well; "small but adequate" at this point; there's trivial leakage and stenosis so he doesn't anticipate needing to repair or replace the valve, though it's still a slight possibility.
• After the obstruction below the valve is removed, there's a chance that the valve may be worse than it looked in recent imaging because the subaortic blockage had masked how it's really working.  If that's the case, then something may need to be done to the valve.
  
• Hopefully it's a straightforward surgery focused on removing just the blockage below the valve.
• Open heart surgery is needed for this type of obstruction.  Levi's heart will be stopped and he'll be placed on the heart and lung machine.  The surgeon will open the aorta, then open the aortic valve, and work through the valve to get at the subaortic obstructions.
• Risks for this surgery besides the scary obvious one:
• Slight chance of damaging the aortic valve.
• Heart block and the need for a pacemaker is a risk (10-20%), which is higher than before due to re-operation and scars. It's not as clear in there and there's a risk of damaging the heart's conduction system.
• A pacemaker might be needed? If Levi comes out of surgery with a slow heartbeat, then he'll be closely monitored to see if it returns to normal.  It would be a wait and see situation.  Could improve in hours, days, or weeks.  If it doesn't, then a pacemaker is needed.  They would reopen Levi's chest, attach the pacing leads to the heart, and place the device in the abdominal wall just below the ribs.
• Any restrictions leading up to surgery?  No extended periods of exercise.
• Will Levi's moderate left ventricular hypertrophy decrease after surgery?  Yes, in a few months it will shrink without the blockage.
• If all goes well and the subaortic stenosis doesn't grow back aggressively again, what could be Levi's next surgery? Hard to tell. At puberty, Levi might outgrow his valve and ring and need a replacement--maybe.
• Reoccurrence rate for subaortic stenosis? Levi's case is unusual.  It's abnormal that his grew back so quickly after being taken out during his last surgery. Levi has an aggressive scar forming process.  After this surgery though, the chances should be much lower.
• Do we need to have a plan in place just in case Levi ends up needing a valve replacement during this surgery?  Yes. The choices include: 

• A Ross/Konno procedure (enlarging the aortic annulus, moving the pulmonary valve to the aortic position, and placing a donor valve in the pulmonary position--advantage is the "new" aortic valve will grow, but the pulmonary valve will need to be replaced as it's outgrown or deteriorates.)  
• A tissue bioprosthetic/pig valve (will deteriorate over time and need to be replaced). 
• A mechanical valve (blood thinners needed for life and activity restrictions). 
• Given all risks/benefits it's the family's call.  This surgeon leans a little more toward the Ross/Konno at Levi's age, but it's a more complex surgery and involves replacing two valves instead of one. 
• Hopefully no replacement is necessary during this surgery!!
• What medical advances are on the horizon that might help Levi in the future? Nothing for subaortic stenosis, but if Levi needs a valve replacement, there is active research on using stem cells to make valves.  Researchers are also trying to develop a special chemical coating for mechanical valves so that blood thinner isn't needed. It's unknown if these will become reality in Levi's lifetime.

That about summarizes our conversation! I know I can be a bit longwinded with some posts.  What started out as a way to keep family and friends informed has also become my way to chronicle this journey for my own records as well--hence all the extra details. :)

We feel confident that Levi is in good hands with Dr. Hanley.  We just want this all over and behind us so Levi can heal and his heart and body can grow strong and healthy.  In the meantime, we're counting down the days till it's "go" time.