Thursday, March 7, 2013

Date Set

As many of you know, we've been waiting to hear from the team in Indy about scheduling Eli's next surgery.  We got the call last week but had to play some phone tag.  As of Monday, we've got it set up (as set as a heart baby's schedule can be anyway). 

Eli's Fontan and pacemaker placement will be Wednesday, April 17.  That's the day our beautiful brown eyed baby will be put to sleep for the eighth time and his chest cracked open for the third time in his short life.  It's the day we've been dreading for months and months, yet we are more aware each day that his body is needing this day to come. 

What is the Fontan? If you want more detail, click here. In a nutshell, the Fontan reroutes how the blood from the lower part of his body (chest down) is returned to his heart and lungs for oxygenation. The second heart surgery (Glenn) was basically the same thing but it was for his upper extremities, head and neck. Because of the amount of blood that will be rerouted, his body will go through a huge adjustment in the first few days following surgery. He may have a lot of swelling and fluid on the lungs as his body responds to its new plumbing and figures out what to do with the extra fluid. We've been told kids who are bigger tend to have an easier time adjusting and may have less fluid on the lungs. That's why they've waited so long to do this, they wanted Eli bigger. In June of 2012, Dr. Parikh said ideally he should be between 25 and 30 pounds. His last weight was just under 27 pounds. Hopefully he can deal with the fluid adjustment but if he can't, they will give him diuretics to flush the fluid out (you may have heard of Lasix or Aldactone, these are diuretics he's been on before after surgery). If the medicine isn't enough they will have to place a chest tube (or multiple tubes) to drain the fluid from his lungs. That's why there's such a large window of time for his hospitalization. It all depends on how his body reacts to the rerouting and accommodates the extra fluid. Chest tubes mean a longer hospitalization. Of course there are other factors that could come into play, but the fluid is the major concern from what we understand at this point

Why does this seem so hard this time?  We've done it twice before.  The first heart surgery (Norwood), we had no choice.  It was done four days after his diagnosis and we were completely in shock.  It was painfully obvious to us, to anyone, that if he didn't have that surgery when he did, he was going to die very soon.  His second heart surgery (Glenn or Hemi-Fontan) was a little more planned, but even though we knew it was coming and had some time to prepare, we were still somewhat numb from the year we'd had.  Both of those surgeries as well as a heart catheterization and two surgeries for his feeding tube all happened within eight months of each other.  In that time we had to adapt to a whole new lifestyle around this world of congenital heart defects.  We knew Eli had to have that surgery and it didn't seem as risky as the first one.  It wasn't as risky as the first one.  Before the Norwood, he was dying.  Before the Glenn, he was thriving.  He was as healthy as he could be going into that surgery.  That knowledge coupled with the euphoria we experienced when he not only made it out of that first surgery, but shocked everyone with his super-human recovery (my phrase, not the doctors!), led us to be very calm as we approached his Glenn. 

Now it's time for the Fontan.  By the time that surgery date comes, we'll have had 19 months to prepare ourselves for it.  No, we didn't think about it everyday, especially in the beginning.  But as time passed and we got closer, it was hard to ignore the nerves.  We've had time to adjust our lives.  We eat, sleep, drink, and breathe CHDs every moment of our lives, yet it doesn't always feel like it comsumes us.  Most of the time it's an aspect of our lives.  Other times, it's the silent focus.  We've done more research, gotten more involved in the CHD community, and heard more stories from other families.  Expanding our knowledge has its obvious benefits, but there are negatives as well.  For every story of a successful surgery, there's a story of a family whose outcome was the worst.  For every triumph, there's a tragedy.  For every adult who can proudly lay claim to living to adulthood with a CHD, there's a parent whose CHD child didn't.

This surgery is not a fix.  It is not a cure.  I've said it before and I'll keep repeating it:  There is no fix or cure for Eli's heart.  These surgeries buy us time.  We don't know how long.  Our hope is 15 years or more, but we don't know.  We've been asked if he'll just have to have surgery every few years to "keep going."  Fair question, but no.  The Fontan is the last planned surgery in this series for Eli.  True, there may be some type of "maintenance" surgery or procedure down the road, but this is the last major surgery available to him at this point.  Whenever his heart starts to give out/deteriorate/decrease in function, his next step will be a heart transplant.  Many people will view that as a fix, and in some respects it will be because Eli will have a healthy heart beating in his scarred chest.  However, a heart transplant is not a fix either.  It's a used heart and the time frame for it to last is only about 10 years.  It comes with a whole new world of strictly scheduled, expensive medicines that he will take for the rest of his borrowed life.  It comes with an increased risk of cancer.  It comes with restrictions on his activities that will continually remind him he's different from others.  It comes at a steep emotional price.  Knowing that a transplant could be our only hope after the Fontan is another reason why we aren't ready for this to happen.  It seems like we'll be out of options.

When I notified one of my coworkers of the surgery date being set, she responded by saying it must be bittersweet.  It is.  We know he needs this.  We know that he will feel better after this surgery.  It will increase his energy level (which I must admit makes me wonder when I'll get a surgery to increase MY energy level to keep up with him!).  His oxygen saturation levels are currently in the low to mid 70s.  After the Fontan, his levels could be in the 90s.  I don't know if he's ever been in the 90s for any length of time! 

It's been hard to convince ourselves that now is the time.  We don't want to wait until he's in distress.  We want the preop conditions to be as optimal as possible.  It's just hard to be on the phone scheduling a time to put him to sleep, crack his chest open, stop his heart, do the deed, sew him up, and keep him in the hospital for anywhere from a week to a month as I'm watching him jump around doing the Hot Dog dance while he wears his daddy's shoes and a plastic fireman's helmet.  Even with his purple lips and fingers, he's cute as a button and rotten to the core and that makes him so perfect to us. 

This time seems harder.  Is it because we've had more time to learn about the good and the bad?  Is it because the boys are older and we have to face their emotions more than we did two years ago?  Is it because we're not looking forward to occupying Eli in a hospital bed for up to a month?  All the above and then some. 

For the other two heart surgeries, Zachary spent the day with his Aunt Cara (Bryan's sister).  The first time, he was fine.  He was barely three years old and really didn't understand what was going on.  We thought that was true the second time, but we were wrong.  Zachary spent the day throwing up until he heard Eli was out of surgery and doing well.  He said, "That's good" and fell asleep on the couch for two hours only to wake up with a calm belly.  He knew, but we didn't think he did.  Now we KNOW he gets just enough to be dangerous.  Some may think this is crazy, but he will be at the hospital with us the day of surgery.  He needs to be there.  Our parents and probably one or two of our sisters will be there too.  They'll help us take care of him and shield him when necessary.  Zachary has been involved in Eli's care since he came home from that first surgery by helping with his medicines, his feedings, and countless hours of therapy.  Our five year old has earned the right to be with his family as his baby brother has another surgery on his sick heart. 

Eli is older now too.  He may be a little behind the norm when it comes to talking, but there's no mistaking his smarts.  He knows when we're at the doctor's office and he's about to get a shot by the way the nurse walks in hiding the needles with his chart.  For days afterwards he will point to his thighs and in a very sad voice say "boo-boo, Amy" (meaning Dr. Amy even though she's not the one givng the shots).  He knows the exam tables, blood pressure cuffs, O2 monitors, and stethoscopes.  He knows none of that machinery hurts him, but he often cries anyway because he's tired of it.  He's probably had his blood pressure taken as many times as I have in my 36 years.  Now we have to prepare to see him in a hospital bed, probably in pain, and just not his normal self.  Yes, he'll be sedated for a while.  Yes, he'll be "out of it" and not really care for a while, but most of the time he'll be awake.  He will not feel well as his body adjusts and he'll most likely be pretty pissed off for a long time.  Not that I blame him.  We're stocking up on movies, making lists of his favorite toys that are hospital-bed friendly, and starting stockpiles of new toys, books, and gadgets that may keep his happy interest for a blessed three minutes at a time. 

These are some of the reasons we're not looking forward to the Fontan. 

So please, keep the prayers coming.  Specifically:
- pray for our peace of mind over these next few weeks as we prepare our family for another separation and interruption in our lives
-pray for us to have lots of quality family moments that will help replace the moments of doubt in our minds
-pray for Eli's surgeon and cardiologist(s) to stay healthy and be ready to do their best for us again

Now you know when to wear your new Eli's MVPs shirt you've ordered!  Obviously we want you to proudly wear them all the time, but especially on April 17.  If you haven't ordered yet, there's still time.  Contact us through Facebook or email your order to and we can get it turned in next week.  Thank you for your prayers and continued support.  We will be asking for more of them as we get closer and get through this next stage in our lives. 

1 comment:

  1. Jessica, as always, we appreciate your honesty sharing your story. Our thoughts and prayers are and will be with you, and I'll be wearing my shirt!
    -Chris and Kim Herbertz