Thursday, June 23, 2016

Ben's Cath Lab

Dear Friends and Family,
We wanted to update you a bit on Benjamin's progress and a procedure that will take place today. We are continually amazed by God's faithfulness to our family and His healing power continuing to be at work in Ben's life. We have a wild and crazy toddler man who is constantly making us laugh, pray over our parenting, and bringing joy and smiles wherever he goes! We have been living such normal days that days like today hold lots of weight and emotions for us- but we know our God is faithful and holds every bit of this and every bit of us in His Sovereign hands.
Ben has continued to thrive after two open heart surgeries in the first few months of his life, and this past year has shown exponential growth developmentally with the help of dedicated therapists and a wonderful rehabilitation center where so far he has tested out of feeding therapy/ food school, and speech therapy! He continues with physical therapy once a week and we are amazed by his steady progress. We praise God for the therapists He has placed in our lives to further Ben's healing.
After an aggressive G tube hunger wean this past fall, Ben began eating which is an extremely complex process with unbelievable struggles, and he handled it like a champ! We knew he could eat and he has been eating- all by mouth and tube free now- for more than 7 months!
Today Ben has a cath lab where one of the excellent cardiologists on the team will coil some new blood vessels (collaterals)  that have grown out from his heart. These are normal after heart surgeries but affect Ben's blood flow and the oxygenation of the blood in his body. We are praying that this procedure will increase his saturations! Will you pray with us?
If his saturations increase to a more normal range for him, we will be able to wait until next summer for his next open heart surgery, and his g tube will be able to be removed. If for some reason this procedure does not increase his saturations, surgery will be scheduled for this summer, sometime between now and October, which is the end of scheduled heart surgeries as it is the beginning of cold and flu season (and my due date with Boone).  This would mean his G tube will stay through surgery and his recovery as weight loss is common after this third surgery and our tiny Ben weighs in currently at a whopping 22 lbs. We are really hoping his tube can come out and he can continue growing and developing and gaining weight over the next year, and that his next surgery can wait until next summer!
Would you join us in asking for precision with the procedure? For Jesus' presence to be felt? For the  peace of Jesus to wash over Ben's body as he prepares, is under anesthesia, and during his recovery? For our hearts to be abiding and trusting God's plans no matter what is decided? 
We again are so humbled by the tribe of support the Lord has surrounded us with and praise Him for each of you standing with us in prayer.
We love you in Jesus!
The Kelleys

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