Carson's diagnosis of biliary atresia was eight years ago today. For several weeks we knew something was going on. He looked just fine until he was about 3 weeks old. Shortly after that is when we started the roller coaster of medical tests - HIDA scans (where radioactive dye is injected into the biliary tree and scans are taken every hour for 4-6 hours - all while your baby is npo (no food or drink)), ultrasounds, blood draws...it was incredibly stressful to say the least. Many people had 'theories' or 'helpful' ideas of what we should do to help him. Ultimately, we needed a miracle and some very talented doctors.
We had spent some time in the Cities starting when he was about 4 1/2 weeks old. It ws in that time frame that we learned about his heart and his need for future surgery.
When no other explanations were found and everything else was ruled out for a liver disease, we knew he needed to have exploratory surgery. That was eight years ago today. We were still overwhelmed from the news of a looming open heart surgery. When we learned that he did indeed have biliary atresia and we were devastated. It was 'worst case scenario'. We knew he'd most likely need a liver transplant some day (hopefully later rather than sooner). While Carson's Kasai surgery was done (part of his small intestine was reconstructed to provide him with a bile duct and hopefully give him proper bile drainage out of his liver), the surgeon also took out his appendix, since his was on the wrong side (and didn't want to have Carson presenting with an 'opposite side' appendicitis). His intestines were flipped around too. Thankfully, that had no implications.
As new parents, we quickly knew our priorities had changed. We knew that Carson would not be going to a daycare - too many things to watch for and too many germs - no matter how clean the center was. :-) Since Trav was just wrapping up Grad School, we knew it made sense for Travis to stay home with Carson. We are so happy we made that decision - we knew it has been critical to Carson's success.
Through the years we've had to fight for certain things for Carson - and of course it has been worth every bit. We've certainly missed out on some things too through the years - from 'normal' baby stuff to family events to other events. But we wouldn't have done it any other way.
We love you, Carson. You are an amazing kid and have taught us so, so, so much. You are a great big brother and a wonderful son. We love you to the moon and back!!!
3 comments:
It this maybe seems like an awful thing to say but . . . if it weren't for all of those things, I probably would have never been given the the AMAZINGLY WONDERFUL opportunity to know all of you! I love you guys!
They say that with every hardship comes something positive. ;-)
And, Carson, I might add: You are an outstanding, extraordinary grandson! You have provided me with a much closer picture of who God is throughout your whole life, proven that God answers prayers, He still gives us miracles, and shown me what really matters in this life.
I love you lots and lots.
Hugs, kisses, and nuzzles to your nut-brown hair (hare).
Love Grammy
Carson...I forgot to tell you to read Romans 8:28 in your Bible. That is the Bible verse I claimed for you when you were a very sick orange baby ! Your name is by that verse in my Bible. It goes along with the song I also claimed for you "God Will Make a Way" (where there seems to be no way) by Don Moen. I sang it all the way to Minneapolis when I drove down for your first surgery in June 2001. (I also cried all the way to Minneapolis. Good thing music has perfect pitch by the time God hears it in heaven, because I don't think I was singing very well.)
Love, Grammy
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