tough decisions

One of the hardest things about raising Isaac is making decisions for him, because they impact him so deeply. After we had to start him on a second round of antibiotics a few weeks ago we started thinking this hole needs to be addressed, aggressively.
We emailed Dr. Hess in Minnesota and laid out the plans from Cincinnati for his opinion, he sent a very thorough response. He essentially said that anything less then just replacing the esophagus with colon would a patch, and we will deal with this repeatedly. He also again suggested possibly removing a portion of Isaac’s right lung.
I emailed Dr. V in Cincinnati, and he also sent a nice thorough reply today. He agrees that scarring Isaac’s esophagus will not be the best fix, and he has successfully placed colon in place of esophagus in a lot of kids – and wants to discuss this option after scoping Isaac one more time to make sure they haven’t missed anything.
So, we have a multi-million dollar esophagus that we have put 5 years into saving. We have watched our little boy get very sick in the process, several times. We have watched him fight and turn it around every time. It seems it just time to let it go. It is time to give him his best chance at being healthy – forever.
He wants to eat, he wants to drink, he wants to play and run and talk – but when he has a hole in his esophagus and that hole impacts his lung function he can’t do those things the way he would like.
When/if we go this route we are looking at a major surgery, one that will be very hard for this 5 year old who totally gets it now. It will stink, but we will do whatever it takes to give Isaac every chance he deserves.

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