Check out my new glasses!
Simon kept crossing his fingers the day before his surgery!
What a day we had yesterday!!( I apologize if this comes out scattered and all over the place... I am still so overwhelmed from yesterday, it is difficult to explain all that happened). Simon was scheduled to have the scar tissue cut out of his esophagus and have the initial repair repeated. In other words, they were going to cut the esophagus in half and start over. This is a major thoracic surgery with many risks involved. He would have been on a ventilator and in intensive care for some time. This was not a decision we made lightly. The surgeon and I have had countless conversations about what the next step for Simon should be and how he is progressing. To look at Simon, you would never know that anything was wrong with him, he looks like a healthy 16 month old. The problem arises when feeding Simon. He cannot eat like a normal toddler. He has a very difficult time swallowing anything very big, and also struggles with acid re flux. I spend a
great deal of my day pureeing, chopping, mashing, overcooking, etc, the small variety of foods that he can handle. Despite my best efforts, several times a week he has terrible coughing episodes because food is stuck in his throat. In spite of this, he is doing remarkable. Though he is very skinny, he is growing at an acceptable pace, and is quite tall. He is developing well and has started walking. He is behind in a few areas and has recently started wearing glasses, but there are no huge red flags considering his prematurity and his condition. There are so many children with esophageal atresia who are not as fortunate as Simon. Some are tube fed for so long, they have oral aversions. Some do not have enough esophagus to work with and have to have their stomach pulled up to make the connection. Some are tube fed around the clock even after they are released from the hospital. We are so blessed that these are not our realities.
So after a very long conversation with Clint, Dr. Soldes (Simon's angel) Dr. Parry and myself yesterday we all came to the same conclusion... The risks of going forward were just too high. No one in that room yesterday knew what was going to happen if we proceeded as planned. Dr. Soldes put it best... "The greatest threat to GOOD is BETTER" Simon is good, maybe as good as he is going to be. To risk all he has overcome just seemed too scary. So the docs went in with a scope to take a look and decided that we wold leave well enough alone. We will work with him as he grows to teach him how to chew really well and drink lots of liquids while he eats. So for now that is the plan. I cannot put into words how relieved I was to hear this yesterday. I had the worst feeling about the entire thing, I JUST DID NOT WANT TO DO IT! Not at all. So when the docs brought up they were considering not moving forward, I was shocked at first, but so incredibly
grateful. Dr. Soldes and Dr. Parry have been with us through every step of this, and I have never doubted them for a second. They told us yesterday they had been talking about what to do next with Simon for 6 months. I don't doubt for one second that is true, I truly believe they care deeply for his well-being. I can honestly never say enough good things about everyone at Akron Children's. I have talked to families who have traveled literally across the county and the world to get the level of care that Simon is receiving 7 miles from our house. Those doctors, NICU docs and nurses, Maternal fetal medicine, outpatient surgery, the surgeons office staff, and countless others have all taken such great care of our little guy and us too! There just aren't words to express how grateful we are.
Thank you to everyone who called, sent texts, facebooked, sent cards, came and waited with us, sent lunch, and most of all prayed for all involved yesterday. There is not one doubt in my mind that all those prayers were answered!! Our journey is far from over, but Simon shows us everyday that he is the strongest little guy around, and I know he will be just fine!
