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"

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.

Post Cardiac Catheterization / Consult with Surgeon Date Set for Feb 26

To those who are not on Facebook I want to apologize for the lack of blog updates surrounding Levi's heart catheterization two weeks ago.  I posted a bunch of updates on FB, but never got around to updating my blog.  So sorry!

I also kept hoping to post a definitive answer about when surgery is needed, but it still hasn't come. More hurry up and wait. But we are one step closer!



Cardiac Catheterization

James and Levi waiting for procedure time

So, here's a summary of how Levi's cath went.  Other than the super crazy drive to and from OHSU in Portland through a massive snow storm, everything went as planned.  Levi's heart catheterization on Feb 7 even got bumped up to an early morning time, which was great. This meant Levi could be released the same day and didn't have to spend the night in the hospital.

We were told that the heart catheterization itself went smoothly--for which we're very thankful!  When Levi was returned to us in his recovery room, he continued to sleep for about an hour and a half. 

just arriving in the recovery room

But then Levi had a difficult time coming out of the sedation and was very agitated, thrashing around, crying, and inconsolable.  I believe the nurses and doctors called it emergence delirium.  The opposite of the quiet, still, flat-on-his-back six-hour recovery that was desired after his cath, so as to not cause major bleeding or complications from the femoral artery and vein in the groin which were both accessed during the procedure. Fortunately, the pressure bandage ended up being enough to keep that under control, because Levi was certainly not helping by moving all over the place.  

He did end up getting some more Versed and then morphine through his IV to try to calm him down and help him relax.  It helped a little, but in the end it was a very long and difficult afternoon/evening.   We checked in at 7 am and were discharged at 7 pm.  Levi was exhausted and went right to sleep as soon as we got back to the apartment where we were staying.  He was much more himself the next day and totally back to normal the day after that.

The pedestrian skybridge at OHSU

While in the recovery unit at the hospital, we had hoped to debrief with the interventional cardiologist who performed the heart catheterization, but weren't able to talk to her because she came by right as Levi was waking up and screaming.  I do have a copy of her cath report though and have since spoken with our local cardiologist about it by phone.  

Basically, the cath results show that Levi's subaortic obstruction is severe and his left ventricle now has moderate hypertrophy or thickening. The previously repaired aortic valve itself seems to holding up pretty decently though, which hopefully means he can keep it for now.  But the subaortic obstructions in his left ventricular outflow tract will need to be removed. So we're pretty sure surgery will need to be in the next few months, but are still awaiting final confirmation.  Records have been sent off to LPCH (Stanford) and Boston.

Date Set for Consult with Surgeon

"Mom, look what I built!"

I did get a call from LPCH yesterday and Levi is on their cardiac conference schedule for Wed, Feb 26.  A team of cardiologists and surgeons will meet to discuss Levi's case and review his recent echo and cath imaging. Immediately following that morning's meeting, we are scheduled to have a phone consult with Levi's surgeon, Dr. Hanley.  So, by next Wednesday we should finally have more answers about the timing for surgery and what will need to be done.  We'll also hopefully hear from Boston soon too.  Though we're confident Dr. Hanley will perform Levi's surgery, we want to have a second opinion confirming everything before handing our son over for such a big surgery.

In the meantime, Levi is doing well.  He's a super active little guy who is exceptionally coordinated and always on the go--he especially loves jumping from one piece of furniture to the next and flipping upside down. Or jumping all the way up the stairs with both feet together. It makes me tired just watching!  Then at times I think he may be a little more tired than normal and wonder if it's heart related, but it's hard to tell.

taking a spin on our neighbor's sled

As much as I fear and dread Levi's next open heart surgery, I also want him to have as healthy a heart as possible.  I don't like knowing that it's working so hard right now to pump blood out to the rest of his body.  I don't like knowing that it's just getting worse each day.  I look forward to getting this taken care of so that Levi can heal and move on.  His heart won't be fixed for good, or normal, but it'll be in the best possible shape so he can hopefully get a good number of years out of it before needing another surgery.

My thoughts are again consumed by Levi's heart right now--getting the best care, preparing the family, planning, double checking health insurance and medical bills, gathering records, and reading up as much as I can on this frustrating subaortic stenosis we're dealing with again.  

when life gives you tons of snow, take a ride
around the neighborhood in style

But I can say that though it's exceptionally hard at times to have a child with a serious chronic health condition, it does get a little easier.  Somehow it becomes more "normal" and I cope more efficiently, if that makes sense.  Levi's first year of life was such a blur and my expectations of what life would be like were turned upside down.  The unknown and this new world of CHDs that we'd just been thrown into were incredibly frightening.  At the time I couldn't imagine it getting easier or ever normalizing.  But somehow it has.  It's still very hard, but it's more "normal" now, even though I'd never wish it on anyone. We are so thankful for our amazing little guy and love him so much.

I want to thank all who have come beside us on this journey, especially our friends and family who have helped in the last couple months, as this latest chapter is being written. From childcare and places to stay, to playdates, hugs, listening ears, and coffee, to words of encouragement and an amazing amount of prayers, THANK YOU from the bottom of our hearts. You have helped lighten our load more than you know and we are forever grateful.




My mom shared this short piece with me when Levi was born and it rings true for raising a child with congenital heart defects too.

****WELCOME TO HOLLAND****

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.  

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after

you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. 

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

Some other recent family photos:

Valentine's Day

Jacob's creation for 100's Day at school

Sammy, our big kitten

Noah and Jacob up at Mt. Bachelor

a lazy weekend morning