We have to make a decision

We just met with Dr. A., her pulminologist. The fact that getting her intubated this time was so difficult, and that they haven't extubated her yet, is troubling. If she has breathing difficulties again, then what? He said we have to ask the "What if?" questions. As in, what if this happens and they can't get her intubated. Then we're in a real emergency situation. So now we have to decide to have them perform a tracheostomy.

This would alleviate a lot of her breathing problems as it basically puts the air into her throat, not through that narrow airway. He even said that it's possible she wouldn't need to be on BiPap with this, just some oxygen maybe. Granted, not that we want to get rid of the BiPap and have this!

Dr. A. explained the risks, which aren't overly large. Yes, infection at the site, and it's an open wound basically. However, the risk of NOT doing it could be much worse, possibly fatal.

OK, doctor's here... more later!

So, a neurology resident had stopped in, then her pediatrician... nothing new, just more checking up. As I said, we're at the point where we have to decide this, and it sucks! But, she just can't get enough oxygen through her airway. So we have to do something to help her with that.

The nurses have all been great as usual. Oneof them came in and braided her hair too. After they did the EEG, washed out the goop, then she did a french braid on each side, it's so cute! And it keeps it out of the way some more. She gets so sweaty and drools a lot, they have to suction her quite often.

We're still working on the paperwork to get her appointment at CMH. We don't see us going there anytime soon though. There's no reason to transport her there either. We're in a great PICU, this is a Children's Hospital too. So, we're staying here for now. We don't know when she'll be extubated, they most likely have to wait until we decide on the tracheostomy.

I think that's it for now... more when we have it!