We leave the 8th to drive 1,519 miles. Yay. Thats a long way! We got an updated itinerary, he has been updated, he has 11 appointments that week, then on Friday he will have a bronchoscopy, impedence probe (which will require an NG tube placed through his nose to his tummy), EGD, and a microlaryngoscopy (all will be performed in the operating room). Friday he will stay overnight. At that point, once we know what the inside of his airway looks like, they will schedule the surgery.
And after all is said and done, hes recovered, we move on to scoliosis...
Have you ever been so overwhelmed that you cant stand it? Thats where i am. Panic attacks daily thinking about everything that is about to happen. I am terrified for my baby. Obviously, the reality is, this procedure is very complicated and very risky, but its absolutely medically necessary. I wish i could fix everything thats wrong with him. Severe tracheal stenosis, left pulmonary agenesis, dysphagia, asthma, his heart is in his armpit, he has hydronephrosis, and right ventricular dilation. Ugh. I try to stay positive, but there are times (like now) that everything hits me at once that it feels like my head is going to explode.
We have pre-authorization to be seen in Cincinnati, just waiting on all the paperwork and a phone call that it's on.
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