James and Surgery

I don't think I've updated the blog on surgery updates, and the time has come apparently to do so. Please understand this may turn into a more emotional post than I anticipate-just the nature of the biz.  We are fine, just in transition.

  James is scheduled for his second open heart surgery on September 23rd.  At that time, his surgeon will reconstruct a portion of his aorta that is narrowing again.  Basically, that will include cutting the aorta open vertically (parallel with the aorta) and sewing in a patch to make it bigger.  They will have to cut through some scar tissue, or a lot depending on what it looks like in there-that is something they can't really predict, it will just depend on how his body healed after the other surgery.  They will also address his aortic valve, which is, as always, narrow and bicuspid instead of tricuspid.  This aspect of the surgery is up in the air (annoyingly so, as I have not gotten great communication from our surgical team, but I digress).  There are several options that could happen in regards to this valve.  The simplest would be dilating the valve open, similar to what they did in June.  They could also cut open the third flap as they did when James was a baby.  The most complex would be a full valve replacement, which could involve the Ross procedure and a replacement valve.  The frustration comes with that last option-we don't know yet if that's what they want to do.  I have been calling the surgeon's office to get more info, and hopefully I'll have an answer soon.

The surgery of course will be open-heart, through the same incision as last time.  Essentially, it will look very similar to his first open heart surgery-a chest tube, pacers, a central line through his neck and other lines in his hands/arms.  He'll be intubated for a while afterwards and will be on lasix to decrease the swelling/fluid in his thoracic region.  They will have to keep him sedated for a while obviously, and they expect him to be in the hospital 7-10 days.  We report to the hospital on September 22nd to do pre-op testing, which will include bloodwork and an MRI (that might be sooner).  He had a blood transfusion the first time around, so they like to have matching blood already on hand.  We will go home that night to sleep and then head back to PCH at 5am for his 7am surgery.

I have to take a deep breath typing all of that.

This surgery has me scared.  It brings back a lot of very difficult memories, all the more difficult because James is so much older and aware.  He loves the hospital and his doctors.  But he has never been so cognizant of something this big-and it is big.  I am worried for the moment they will take him to surgery and they have to leave us behind.  I am worried for the first moment he wakes up and fights the breathing tube-for the first moment he feels pain before they can adjust his pain meds.  I am worried about how difficult it will be to see him post-op.  And of course, I am worried about this surgery.  The thought of them cutting into his chest again is too difficult to talk about.  I know this needs to be done.  I am not questioning the surgery-the thought of not doing it and knowing his heart is getting worse makes the decision easier.  But I feel on the verge of a panic attack when I stop to really consider what we are getting into in just a few weeks....3 to be exact.

Deep breath again.

For the time being, I am just living in the day and appreciating our family time, and especially our time with James.  We have such a talented group of doctors in our corner, I have to trust that and the Lord.  Jared and I have started to make plans for surgery day and thereafter-though I have to admit, it has been difficult for me to plan when I don't know if we are moving forward with valve replacement yet.  I feel like I have to have time to wrap my brain around the idea of valve replacement, and I can't do that if I don't know.  Jared told me the other day that I should give myself permission to just plan on valve replacement so I can work through that mentally....if it doesn't end up happening, great!  But if it does, I'll be prepared.  It was good advice, hence why we were able to start talking about the planning details over the weekend.  More of that will come of course, we are just taking it one day at a time to avoid over-worrying.

James continues to be his rambunctious little self, without a care in the world.  I talk with him about hospitals, surgery, and his doctors, just so he has some of the lingo/terms down.  We talk about surgery on his "heart line"....it seems so simplistic during those conversations, sometimes I try to tell myself that it is just that easy.  He brights up my outlook so very much, it takes a lot of willpower for me to give him nose kissies and to just live in that joy without letting myself sink into the potential depression of looming surgery.

The other day I introduced James to one of my favorite children's books, "There a Nightmare in My Attic".  He loves that book to pieces, and I really built it up to make the monster somewhat scary.  We were reading it for the 87th time yesterday, and I was telling James, "Ohhhhh, the monster is scary!"  James put his hand on my cheek, cocked his head, and said, "No, monster is just fine."  He used to be super scared of that monster-the first time we read the book, he dug his head into my lap to avoid looking at it!  And now the monster is just fine, and he has no qualms looking at it.

So I suppose this surgery is my monster as a mother.  And I should take after my beautiful 2 year-old's example and trust that the monster is just fine.  I will call that my work in progress for now and keep working on putting one foot ahead of the other.