Thursday, April 11, 2013

The Countdown Continues

By this time next week, Eli's surgery will be over and he'll be spending his first night of this leg of his journey in the PICU (pediatric intensive care unit).  What is this surgery?  What will they do?  In a nutshell, they're changing how the "used" blood (unoxygenated) returns to his heart.  It will be rerouted to bypass the right side of his heart (the side that doesn't work) and go straight to the lungs to get oxygen.  From there it will go to the left side of the heart to be pumped out to the body.  This surgery is called a Fontan.  For more information on the Fontan, the previous operations he's had, and what his defects are, click here.

He will also get a pacemaker.  Why does he need a pacemaker?  During Eli's last heart surgery (the Glenn or Hemi-Fontan) his heart rhythm changed.  We've been told that a change in rhythm is common for these kids, but most don't happen until sometime after the Fontan.  We like to think of Eli as an overachiever.  Part of Eli's heart isn't firing properly.  That affects his heart rate.  A kid his age should have a heart rate of around 120.  Eli's average is 80.  When he's really mad he might get to 100.  When we get upset our heart rates usually go up.  Eli is two, his way of showing he's upset is by crying.  If Eli is crying about something, it makes him feel bad.  Physically feel bad, not emotionally "oh, woe is me" bad.  He feels worse as he's crying, but again, he's two, so he doesn't know that.  He just knows he had something to cry about and now he feels worse.  So he cries more.  That makes him feel even worse.  It's a viscous cycle.  It's hard for us because we don't want to give in to every single cry and make him think that crying gets him what he wants.  On the other hand, we have to do what we can to calm him.  Otherwise we'll be cleaning up vomit, his head will be very sweaty, his lips, nose, and fingers will be blue and it will take a LONG time to make him feel better.  We try to use a lot of distraction but sometimes that doesn't work and we just give in.  A pacemaker will help increase his heart rate and keep it in a steady rhythm.  Dr. Steinberg (cardiologist who will put in the pacemaker) told us more than a year ago that he was not worried about Eli's heart stopping.  If that was a concern, he would've had a pacemaker long before now.  It's just not ideal for a single-ventricle baby to further stress his heart with an abnormal rhythm.  Eli has tolerated that rhythm (a junctional rhythm for all my medical buddies reading this!) for over a year.  The goal was to do it with the Fontan and that's where we're at now.

Here's what we know about pre op and surgery day so far.  Tuesday, April 16, Eli has an appointment with the surgical nurse practitioner and Dr. Steinberg.  They will examine him and explain more about the surgery to us.  Eli will also have an echocardiogram (ultrasound of the heart) and an EKG (shows the electrical activity/rhythm of the heart).  When we're done there, we'll be escorted to the hospital where he will have some xrays and bloodwork done.  All in all it will probably be about three hours.  We'll have the rest of the afternoon and evening together and we'll spend the night at my sister's house.  Early Wednesday morning, April 17, Bryan and I will take Eli to the hospital.  What time?  We'll find out Tuesday.  We don't have anything else going on Wednesday so we're pretty flexible with whatever they have scheduled ;)  My sister & mom will bring Zachary to the hospital at some point.  We haven't decided if that will be before surgery so they can see each other one more time, or if we'll wait until surgery has started.  That will be determined later depending on moods and required times!

Eli's hospitalization is expected to be anywhere from a week to a month.  It all depends on how his body tolerates this new "plumbing" they're doing.  One complication that may arise is fluid on his lungs.  The length of stay is directly related to how his body deals with the fluid (if there is any) and what interventions the doctors need to take to aid with that.

These past few days and the next few are busy for us.  We're trying to have a lot of family time.  We're trying not to think about it despite it always being on our minds.  We're trying to finish shirt orders.  We're trying to clean house, turn in our recycling, and take care of some yard work so we don't come home to the house the way it is now!  We're trying to pack.

That's a task that almost deserves its own post!  We have to pack in stages.  We'll spend one night at my sister's so we don't need a lot for one night.  Zachary will be staying longer with her so he'll need several days' worth of clothes, plus some of his favorite games, dinosaurs, loveys, movies, and art supplies (he plans on making a lot of cards while we're apart!)  The day of surgery, we will have a bag of things to occupy our time in the waiting room.  That bag will probably never be opened, but the effort must be made.  It also needs to contain a few things for Eli that we'll give him when we finally get to see him after surgery.  We won't know what room he'll be in until after surgery, so our bigger, several-days'-worth-of-stuff-bag will stay in the van until that evening.  We'll need spare pacifiers, his lullaby CD, a DVD with noise he likes (something familiar & comforting), and a favorite stuffed animal or two.  Yes, he'll still be unconscious, but in the past he knew his own things and he's even smarter now.  Finally, we'll have two bigger bags to rotate between the van and the hospital room.  That's so we don't have to be down to our last pair of underwear before doing laundry (there's a washer & dryer on one of the pediatric floors).  We don't pack a lot for ourselves, but we will have a lot of Eli's favorite toys, books, DVD's, etc for him once he's awake and needs to stay in his bed but doesn't want to.

We're also stocking up on cards, small gifts, stickers, etc to mail to Zachary while we're apart.  He'll be with my sister for the first few days and get to visit, but he will be back home with family before we are.  Last time, we mailed one or two things every day so he constantly had something from me, Bryan, Eli or any combination of us.  Something else we did last time and will do again is to let him pick out two folders (or if there's time, we'll make them).  One folder will stay with him and the other with us.  While we're apart we fill it with notes, pictures, anything that makes us smile and think of the other.  When he comes to visit on weekends or when Eli's discharged home, we'll exchange the folders.  Last time we made a treasure map for him.  He didn't know about that until the end of one of his visits.  We gave it to him when he was getting ready to leave so that he had something to look forward to when he got home.  The next day he and Mamaw used the map to find the "X" that was in our yard and dig up the treasure.  It was a box with goodies in Ziploc baggies.  He had lots of stickers, a couple new movies and a book.  He liked it a lot and we'll do something similar to that again.  The point is something for him to look forward to at home even though the four of us aren't there together.

Another big project we did for both boys last time and are updating for this time, is a personal photo album.  There's one for each boy and they're filled with pictures of family and friends.  Zachary'swas mostly the four of us since that's what he was without.  Eli's included more extended family & friends since that's what he was without.  Both have been used a lot since that last surgery just because they're fun to look at.  I wish I had stayed on top of updating them as time went by like I initially planned, but life gets in the way!

We're open to any suggestions for things to occupy Eli in the hospital or things to do for Zachary while we're apart.  Comment on this blog post, send a message through FB, or email us at

Thanks for your concern and support. 

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