tuesday 10/01/2013

I got to the hospital during rounds which is always nice, because I have all the experts in one spot to ask questions of. The theme for today was to sloooow everything down. Basically stop trying so hard to get out of the hospital and to put that out of my mind. I was understanding-but annoyed.    I refused consent for the g-tube surgery and dialatiion monday, to which I received "knuckles" from the attending. Since I told them the night before that I had no intention of signing consent, they didn't make her NPO and didn't have to start an IV, so I saved Ava a little agony.  The doctor did mention today that she would eventually need a g-tube, when we got her feeds sorted out The heart surgery and meds afterward REALLY goofed up her whole feeding regimine. The occupational therapist also thinks it will take Ava a really long time to learn to eat. She may not ever take a bottle and may go straight to solid foods and sippy cups. I spoke with another mother in my rainbow kids meeting today and she took her daughter home with an NG for 9 months until she learned to eat and avoided the g-tube surgery all together. I am kind of leaning this way. (Rainbow kids is a special "club" that is by invitation only for parents of kids with complex disorders. I feel a lot more normal in these meetings than in other NICU ones where we've been here longer than anyone else in the room by many months.) 

Ava's heart rythm indicates a right bundle branch block, sometimes abbreviated RBBB. This shows up as a wide QRS complex on the EKG. I read about it in research papers until about 4am last night. It is common in 60-100% of tetrology of Fallot cases, ESPECIALLY in those where the doctor had to repair the VSD (hole) by cutting into the right ventricle as opposed to getting to it from the right atrium..away from the heart conduction system. The remodeling of the heart or formation of scar tissue after surgery may have triggered it. It may or may not go away. It's just something we'll have to watch and will probably assure that we'll get some monitoring equipment when we go home.