6 Weeks Post-Op Cardiology Appointment

Today Levi had his six week post-surgery cardiology appointment. Levi is officially cleared of all restrictions, so he can resume normal play and activities and return to preschool!  He was very excited to ride his bike this afternoon after a long time without it.  The doctor says he looks good and she doesn't have any concerns about his recovery.

That being said, they were unable to get an EKG because, even on Ativan, Levi screamed and fought every attempt to put the stickers and leads on.  So the cardiologist said to pass on it and we'll try again at his next appointment.

In three months, he'll go back for a complete check-up.  Specifically the doctor will look to see if the aortic stenosis has increased.  Hopefully it stabilizes and stays moderate.  Once it bumps up to severe, he'll head in for surgery again.  We certainly hope that's far off, but you never know with Levi. We've had a number of unexpected twists and turns in the past few years.

Levi had blood drawn today to check his CBC and sed rate. Levi is still running an unexplained very low grade fever. It was an especially hard draw for Levi and he was very shaken up by it all. There was a kink in the tubing, so it had to be done twice, once in each arm, which made it that much worse. His platelet level was high last time, so the doctor wants to be sure it's coming back down. That's really the last missing piece of data, other than the EKG, for me to know he is really doing okay. I'm eager to get the results of the blood tests.

I had a long list of questions to ask the doctor. We are thankful she is very patient and understanding, taking the time to answer all of our questions and concerns. She reassured us that Levi is doing well from a heart standpoint, and even though we didn't get the EKG today, the one we got three weeks ago did look just fine. Last week's echo also looked good except for the moderate stenosis--but that was unchanged from the April 10 echo. 

I'm tired and drained from the appointment, but I know a good night's rest will do me good. 

I'm happy for the three month break and hopefully with the return to regular activities, things will start to feel somewhat normal again.

**Update:   Levi's blood work came back and showed that he platelet level was coming back down and approaching normal. His sed rate was normal. All good news!

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.

Cardiology Appointment -- 10 Days After Surgery

Levi had a very limited cardiology appointment yesterday. 

Levi's chest x-rays were clear and he had no problem holding still for them. Yay!

Unfortunately they were unable to get an EKG done because Levi was absolutely terrified, screaming and kicking, and wouldn't let anyone attach the twelve leads to his torso, let alone calmly hold still for the test itself. We tried lots of tricks, but nothing would work. He's just so incredibly afraid.  

No echo was necessary at this appointment, but the next two appointments will both include an echo.

Levi needed the sutures at his two chest tube sites removed as well as two sutures which were accidentally left in his neck where his central line was located. Again, he was terrified and it took four adults to hold him still while the nurse removed them. He screamed and cried the whole time. Poor guy. Last night I noticed that one of the chest tube sites had reopened, so I'm keeping a close eye on it.  I'm hoping it scabs over and heals uneventfully.

The doctor prescribed Ativan, a drug that should decrease his anxiety a little, so we'll try that for the next appointment.  It's in the same category as Versed, which he's had before and has a hard time coming out of, but I don't know how else we're ever going to get an EKG done in the near future.  So we'll try it even though it's not ideal.  Hopefully it works.

Day 10 - morning before cardiology appointment

The cardiologist doesn't think Levi's chest incision is infected, so that's very good news. She has also never seen an incision look like Levi's with all of it's redness and tiny spreading raised bumps. It appears to be contact dermatitis in reaction to the glue and she recommended just leaving it alone and said it should resolve in time. She said he can take some Benadryl for the itching, but doesn't recommend a steroid cream because it might hinder the healing.

I also sent more recent pictures of the incision to a doctor at Stanford yesterday and she agreed that it looks like contact dermatitis. I just want to make sure this is what it is so it can be avoided in the future.  

Levi's energy level seems pretty close to normal and he looks and acts like himself, other than the fear of being touched. He's generally happy and was even joking around with me a little bit ago.  "Mommy.  Guess what?..... That's what!!"  And he laughed and laughed. :) Marbles, blocks, and Hot Wheels are this morning's toys of choice, with the Frozen soundtrack playing in the background. It should be a good, low-key day.

Levi's next cardiology appointments are April 10 and May 1.

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"