This child lives up to his nickname... Tank!

Frankie is such a tough, fighting little man. He was awfully sick this time last week and now he's his old self again! Thank God!

Frankie is officially on breast milk again! And, it's not fortified! At least not yet. They may start doing it again but I'm not sure yet. Frankie's goals so he can head back home will be to be at full feeds again and for us to ween his oxygen back down to a level that we can go home on. He is currently still on 2 liters. They wanted him to try eating again first before weening. They didn't want to do multiple things at once and then not know which one caused the issue.

Currently Frankie is on lasixs (water pill), his sildenifil (Viagra), Pepcid and his breast milk. Oh and his oxygen. They will ween down his oxygen and lasixs before we head out again. He is no longer on his tpn (iv nutrition) and lipids (iv fat) since he's taking a fair amount of breast milk. Right now he is running at 20ml/hr. They will increase that to 25ml/hr at 10pm. And then again to 30ml/hr at 10am. Holding steady at 30 if he can tolerate it. Fingers crossed. He's never had this much volume before.

He's been in a great mood the last few days! He's finally getting to eat again and seems to be pretty well recovered from surgery. I've tried to give him a bottle again but he has this learned behavior of "see a bottle... Cue tears!". So, we are working on it. I won't give up but I also don't want it to be a bad thing for him and in the future struggle even more to get him to eat.

We aren't sure if we are doing hernia surgery before we go or not. Ever since his intestinal blockage surgery, we haven't seen the hernia. Our nurse this evening is going to ask about it in early morning rounds. If he is getting surgery again we wanted to talk to them about how they will do anesthesia. I really would hate for Frankie to be intubated (on a ventilator) again. Especially for such a mine surgery. There is a possibility of them doing a spinal (like they did for my c section) instead. It's just something we will have to talk to them about.

I talked with the cardiologist yesterday about his asd. They don't usually perform surgery to repair it until the child is 4-5 years old. He said Frankie would be 2 at the earliest. That's a relief. And they do the surgery like a cardiac cath. Not by cranking open his chest. Another relief.

That's all for now! Everyone enjoy their new year! Love to you all!!!!