Thursday, March 14, 2013

Levi's Heart Surgeon

Today we met with the surgeon who will be performing Levi's heart surgery. We loved him! He was so patient and friendly and took his time explaining everything that would need to be done and various scenarios.  It still gets confusing but I feel we have a better understanding of Levi's condition.  Levi has Tetrolgy of  Fallot (TOF),  along with a Complete Atrioventricular Septal defect (AVD)with Double Outleft Right Ventricle (DORV), and pulmonary stenosis (PS).  Again, it was mentioned they do not understand the change in his condition from November to now, BUT, they are glad because unless they get in there and find something that has not shown up Levi WILL have a two ventricle heart. He WILL have a normal life expectancy. He WILL be able to participate in any activities that he like. He will not need a heart transplant in his teens.  He won't even have to take his daily dose of aspirin!  God is so good!!!  We do have several things for you all to be praying for.  One, Levi will need a conduit that will allow blood to flow from his left ventricle up to his pulmonary artery.  There are two ways to do this.  The preferable way is to use his own tissue. This allows the conduit to grow as Levi grows. He would probably require another open heart surgery in his twenties to replace a valve but past that he would be set.  If they can't use his tissue they will use a synthetic conduit. Obviously this cannot grow with Levi so in 4-5 years it would need to be replaced. And, this would go on until he is done growing.  The outcome is the same for either conduit but the first option would decrease the number of open heart surgeries required. So please pray with us he can have a tissue conduit. Two, the are a group of cells close to the AVD that control the electrics impulses of the heart.  They cannot be seen but they know approximately where they should be. However, everyone's heart is different so there's a risk when they patch his holes they could damage some of those cells causing his heart to fire erratically.  If this happens he would need a pacemaker.  Please be praying they will NOT disrupt this cluster of cells.   Lastly, be praying his valves are attached appropriately.  All tests have shown that they are but there is a small chance that they will get in there and find they are not.  If this is the case we are back to a single ventricle heart.   Surgery is not until June 26th so we will post a more detailed prayer list but these are three things we can all be praying for now.   Levi has his tracheal surgery April 11th.That's only 28 days. Be praying for this surgery as well. That Levi would be at peace and feel the Lord's presence.  This surgery is not overly risky but being on a vent for 5 days is going to be hard on a 3 year old.  He is also going to wake up to a new lip. That will be a big change for all of us. 

"Now to Him who is able to do immeasurably more than all we ask or imagine, 
to Him be glory in the church and in Christ Jesus throughout all generations, 
according to His power that is at work within us, for ever and ever! Amen." 
Ephesians 3:20-21