Tuckers appointment went well yesterday. He was fever free until today…UGH. He does not have anything in his lungs or chest, it is all upper airway…as it always is. We discussed a lot of things with Dr B …we just don’t get to see her much other than ill visits and she had been out of town for some months so we caught up on everything. We talked about going to Boston, the Celiac blood screen (Celiac disease is a digestive disorder) and putting orders in for the neck x-ray that checks for Atlantoaxial Instability. (Basically a weakening of the joints that can cause injury during sports –low muscle tone kiddos can be tested to see if this is a potential threat) They generally wait until 3 years old to test. So in April when we go see Cardiology for our echo we will also have our neck x-ray and blood screen.
I will, obviously, be rescheduling our heart surgery in Boston. That will put us into May for heart and tonsils will be at the end of this month or first of next. I put a call right into ENT yesterday to get a new surgery date. This will be the routine until we get them done, schedule, cancel, reschedule. J Tucker time. The good thing is that we will see our cardiologist here, have another echo here and be able to discuss any questions we have with him as well. He knows about hearts, he knows what a bi ventricle repair is, he knows Tucker….not that he could answer all of our questions but he could definitely tell us what it entails and how Tuck’s heart looks now. I haven’t had a sit down with him since we found Dr Del Nido so it will give us a chance to discuss this option with him, let him know we still love him and reassure he that he IS Tucker’s cardiologist. He is not losing us…..NOT NOT NOT!!!
1 week ago