5 Weeks Post-Op: Waiting to Exhale

Today, Levi is five weeks post-op. His incision is largely healed and is looking pretty good now. He continues to run a very low grade fever of around 99.4, which is not normal for him. Levi is still home with me, but should be ready to go back to preschool three mornings a week after his 6 weeks of sternal precautions are lifted next Friday.

Though he's up running around (even though I try to slow him down!) and has long periods of normalcy, Levi has been acting like he is in pain intermittently--the chest, hands, shoulders, feet. He doesn't like me to know when something's hurting and tells me he doesn't need to go to the doctor or hospital. It's tough at this age to know precisely what's really bothering him. If I ask what hurts, he nearly always says, "Nothing, stop it" or, "Don't touch me."  In response, I'm always trying to read him.  I don't want to miss some important warning sign that something might not be right, especially after his last cardiology appointment on April 10, three weeks post-op.

At that appointment, after an echo, we found out that Levi's aortic valve isn't functioning like it should.  The right leaflet didn't look like it was moving much and his pressure gradient is now up in the moderate range, instead of mild like it was immediately following surgery and at the time of discharge. His aortic valve gradient was 37mmHg/mean. Not what we wanted to see. A mean of 50 is what separates moderate from severe.  At discharge the mean was 18-20. So for it to be up at 37 already was a big surprise. And there's no explanation for this rapid change. Aortic valve leakage is still trivial to mild. He also continues to have trivial to mild leakage in his tricuspid and mitral valves as well--not something I normally mention because they definitely take a backseat to all of his aortic valve problems.

One big piece of good news that was overshadowed by these unexpected readings is that all of the subaortic obstructions (the reason for his last surgery) are gone and his left ventricular outflow tract is wide open. That is very good.

Levi also had some blood work done to rule out any infections that might cause his elevated temperature. He had a complete blood count (CBC) and a blood culture.  The culture came back negative, so that was good.  His CBC looks good except for an elevated platelet count. That could be explained as normal for post-surgery, but we will repeat the CBC next week just to be sure.

At my request, Levi's local cardiologist contacted the surgeon at Stanford to let him know about the echo results . He was surprised at the rapidity of the change and asked that we get another echo in a month or two to get another point of reference.

Yesterday, I took Levi in for another echo and X-ray ahead of schedule, because of the unexplained pain he's been having, combined with the persistent low grade fever.  I also think his heart rate and breathing might be a little increased from normal, but it's hard to tell for sure. Is he more easily out of breath too after playing? More tired than usual? So I took him in to be on the safe side. 

His cardiologist called this morning with the results. His pressure gradient across the valve is the same as last time and the aortic valve itself looks unchanged--still one leaflet not working well.  So it's good that things haven't worsened over the past two weeks, but it also confirms that the last appointment's less-than-ideal readings were correct. And it doesn't explain his periods of pain and other symptoms. Hopefully it's just part of recovery from surgery and not something more.

He will go in next Thursday, May 1, for his 6-week post-op cardiology appointment.  He will get an EKG, blood pressure reading, physical exam, and blood work done.

So we are again in wait and watch mode with his pressure gradient sitting at moderate.  I'm not sure how far apart his cardiology appointments will be. Three months? Six months? As long as he's doing well clinically and his left ventricle (LV) looks okay, he will just continue to be followed until his pressure gradient increases, his LV thickens, and surgery is needed again. We really, really hope that's still far in the future, but with the current changes, it's hard not to think that it might be sooner than expected.  And that is very disheartening. 

I've been waiting to exhale after this surgery, and just can't. It's been such a long, long few months since we discovered he would need surgery. I had hoped to get confirmation at the April 10 echo that everything looked great and we could relax, get through recovery, and enjoy life with relatively few heart worries for awhile. Instead I'm in this constant state of

worry again, wondering when things will stabilize, and making sure nothing is being missed during this not-totally-smooth recovery.  

Watching him all day long, trying to make sense of what he's feeling when he winces and lies down, takes it's toll. As does taking his temperature daily, waiting for it to go back down to normal. I can't even imagine Levi going through another surgery anytime in the near future. He's still so traumatized by it all and so am I.

I can see how I probably look like a crazy, over-anxious, hyper-sensitive mom. I feel like one too. I don't want to be, but I can't help it right now. The stakes are too high in my mind and we're so far away from emergency pediatric heart care should a need for it arise. Surgery and recovery this time around is definitely more difficult than the first time and I'm still figuring out how to live with it all.

So I keep plugging away here, anxiously waiting for the appointment next week. I'm really hoping Levi feels great and is totally back to himself soon.

In other news, we were saddened to find out this week that James' grandpa was just diagnosed with stage 4 cancer, so James is flying down to Southern California to see him this weekend.

I try to remember that we have much to be thankful for, but to be totally honest, we're feeling emotionally exhausted at the moment.