20 April 2014

Sometimes we all need a gentle reminder of God's Love / Surgery plan update

I haven't written for a while... I've needed some space and have been using much of my free time to think, reflect and to pray.

The last time I wrote, I was feeling anxious about an upcoming conference call with Luke's surgeon.  I felt responsible for making the right decisions and the stress that came with that was a heavy burden.  Shortly after writing here last time, the Lord sent a friend to our home to pray with our family.  During our visit, we read some scripture and he reminded us to trust in the plan that God has for our family.  After our friend left that day, I spent the afternoon reflecting on how we've gotten to this place... how we came to the decision to go to Boston for Luke's repair.  Of the families we'd met throughout the last year who had also traveled from our general geographical vicinity, 11 hours one way, to Boston for open heart surgery.  Those people who came into our lives at different and unexpected times that had brought us their experiences.  Because of their recommendations, we'd been led choosing to go there ourselves.  I truly believe God was guiding our thought process as we learned the complexities of Luke's specific issues and how different facilities were equipped to deal with them in various ways.  Ultimately, I have to give Him credit for leading us to the best place with the surgeon best skilled to make the repair.

With that positive reminder to trust in God's plan, we entered the conference call that evening with our surgeon in good spirits.  He was confident (as you'd expect), yet was still respectful (as you'd certainly hope).  I continue to be amazed at the new things we are still learning each and every time we have a discussion about Luke's heart.  We've talked about many of the same concepts with different people and each time, there seems to be a new twist to how the information is presented.  Considering this was "the guy", "our surgeon", "the man" who will be doing the job, we took his words with high regard and considered them to trump anything else we've heard from other cardio-thorasic surgeons or cardiologists.  Here are the highlights from our discussion:
  •  Currently, the plan will be to use Luke's own pericardium (fatty tissue surrounding the heart) to patch the ASD and VSD holes.  They will shave some of the pericardium off around the heart and because they will be using tissue native to Luke's body, there is no risk of him rejecting a patch made of synthetic material.  Additionally, the risk of him developing an infection from a synthetic is also diminished!!  Finally, because the pericardium is living tissue, it will have the ability to fuse and regenerate, making it a great long term solution for the repair.
  • One of the most severe risks of the surgery is the potential for Luke to need a permanent pacemaker as a result of the operation.  Apparently, there are microscopic or possibly even invisible pathways where the body's natural electricity runs through the heart tissue, creating a natural pacemaker.  Although it can't be seen by the human eye, it generally runs through the same area in every person - as such, the surgeon just avoids making an incision in that general area.  The catch is that it doesn't always run through the normal place and if it's damaged, it's unlikely that it will repair itself.  As a precaution, Luke will have pacemaker wires placed during his surgery.  My understanding is that it could be 24 - 48 hours until we are certain of whether or not his natural pacemaker was damaged.  
  •  The entire operation should take somewhere between 6 and 8 hours although the actual heart procedure will probably only last somewhere between 60 and 90 minutes.  The entire process will include him being fully sedated, the ventilator will be placed and once it's in the airway, Luke will have a small probe inserted down his throat and into his esophagus which they will use to perform an echo cardiogram to take more pictures and video of his heart.  Apparently this will place the probe closer to his heart than a traditional echo and will allow them to get a better idea of what to expect when they enter the heart.  Next his chest will be opened and the lines for the heart lung bypass machine will be inserted into his arteries .  Prior to making any incisions on his heart, the heart will be injected with cardioplegia, a mixture of potassium and nutrients that will cause the heart to stop beating so the surgeon can work in a bloodless environment.  The heart procedure will be completed, his heart will be restarted and they will complete another of the esophageal echos to validate that the repair worked correctly.  Supposing that's the case, they will close him, bring him up from anesthesia and we will finally get to see him!

It's a lot to consider, but we are praying for continued strength to get through the next few weeks!  We have been receiving some wonderful cards of encouragement in the mail over the course of the last week or so and they have been a tremendous help!  I've been putting each of them in a large envelope in our kitchen and have pulled each of them out a few times to read when I've needed encouragement.  I'm also planning to take them along with us on our trip to read in the waiting room and to display in Luke's recovery room!  We've also even received a few gifts for us to use towards and during our trip... we have been so blessed with loving family and friends!  Thank you so much for wrapping us in God's love and helping us during this journey!!

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