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Saturday, May 19, 2012

Monday is surgery day

So Addie's first surgery has been set for Monday.  It will be a long day for everyone, especially Sweet Adeline and the doctors, nurses and others here at Children's.  Below is a general breakdown of what will be going on and a rough timeline for everything.

The process begins with the anesthesia team around 7am.  Thankfully Camille and I will get to see Addie before they start and then again right before they take her to surgery.  Anesthesia will take about one hour.  They will be placing some central lines, breathing tube and catheter as well as other things.  Then the next couple of hours will be opening up her chest up and getting her started on the heart/lung bypass machine.

After the surgical procedures (2-3) hours they will do an echocardiogram and if everything looks good they will start to wean her off the bypass machine.  She will then be taken back to her room and it will be another 1-2 hours for them to transfer all of her lines, IV pumps, sensors, chest tubes and everything over from the surgery to her crib in her room.  After that, we will get to see her. 

Addie will need to have several procedures done during this first surgery.  They will do what is called a DKS, which is where her pulmonary artery (PA) will be spliced into her current aorta.  This basically replaces her now too small (hypoplastic) aorta with a good size one by using the PA.  Addie's PDA (which is a ductus that is keeping her alive right now and kept open with a medication known as PGE) will be closed off.  Additionally her aorta will be opened up and patched so that it is bigger.  This patching of the aorta helps create much better circulation from the heart to the rest of the body.  This particular procedure also addresses the coarctation (narrowing) of her aortic arch that she has now.  She will also have what is called a Arterial Septostomy.  This basically increases the opening from her right atrium to her left atrium.  Normally there isn't a permanent opening here, but in Addie's case this is actually a good thing and they want to make that pathway larger.  Lastly the surgeon will place what is called a BT shunt.  This is a Gortex shunt that replaces the blood's pathway back into the lungs which was sacrificed by the PA becoming Addie's aorta in the DKS previously explained.  This shunt is temporary and will be taken out during Addie's second surgery (Glenn procedure) to happen in a few months. 
Needless to say there is a whole lot of "re-plumbing" that needs to be done.  Some of the scarier things about the surgery and post-op include the fact that during the patching of the aorta they will have to put Addie in "circulatory arrest."  Basically they cool her body down to about 37 degrees.  This allows them to stop the bypass machine, do the patch and preserve her brain and organ function.  After they are done with this they will have to slowly re-warm her.  This adds some time to the overall surgery.  Another scary part is that when we see Addie for the first time after surgery and for a while afterwards she will have a whole lot more lines, tubes, monitors and IV's than she does now and be intibated and on a respirator.  They keep telling us to be prepared because she just won't look like she does now.  The other scary thing, but routine for these surgeries, is the fact that they will keep Addie's chest open for 1-2 days after the surgery.  This is done so if anything happens they can have quick access to her to fix it and also allow her body to recover from all the work.  They sew a patch over her chest so it is not exposed.  If all goes well and as planned the surgeon will close her chest by Wednesday. 

Please specifically pray for Addie's surgeon, Dr. Joseph Forbess and his team, for a successful surgery. 

That's basically it and that's plenty for her and us. 

We thank everyone so much for all the thoughts, prayers, meals, visits and offers of babysitting Ellie.  And speaking of Ellie, she is doing good. Her Aunt KK took her to a friend's birthday party today and gave Mimi a break. I also got to do Face Time with her the other night while I was here and she didn't really want to see me that much, but she wanted to see Addie.  Big sister genes already kicking in. 


  1. Passing this post on to friends to pray for y'all on Monday...
    Praying for a miracle!!!

  2. great post, guys. we are already praying for addie, but i love being able to pray specifically. much love to you all.

  3. I am friends with Lindsey and just wanted to let you know my family and our Sunday school class at FBC Rockwall is praying for you!

  4. Camille and Scott and your sweet sweet family - you guys are constantly in my thoughts and prayers! Will specifically pray for the surgeon and overall success of the surgery. Xoxo.

  5. Read about your story on Ashley Howry's blog. I'll be lifting your family, your sweet baby, & the doctors and nurses up in prayer as I know many others will as well. - Jenny Schulze

  6. Keeping you, your family, baby Addie and doctors and caregivers in our prayers. We are Jenni Bishop's in-laws. Bill and Terry Gardner

  7. Am praying for your sweet baby girl and your whole family!

  8. Praying for your family in this time. My dear nephew Josiah fought HLHS 3 years ago and May 20th is his birth-day. I understand the difficulty and fear that you may all be in but always pray and take every moment one day at a time. Sweet Adeline is a special girl - let her story be known. What a little miracle! - if you want to read about Josiah's story

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