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.