Quick Extubate Update

Haddie has done well the past few days so they tried to take out her breathing tube today...and so far she is doing great. They have her on Vapotherm again. Basically it's just a nasal cannula that also gives her some moisture as well. She has tolerated it pretty well all day. So that is exciting and we are happy about that.

We had a little battle with the neurologist tonight that has us frustrated but hopefully it all works out. Haddie hasn't had a seizure since the night of her surgery 2 days ago...and that seizure could have been brought on by the surgery itself. Before that she hadn't had a seizure for 4 days. We pushed them a couple weeks ago to ease up on the Phenobarb, the seizure medication that knocks Haddie out. They eased up and she woke up and has been doing good. The new neurologist on call thinks her levels of phenobarb are low so he is going to raise them just to be cautious. We are afraid that will cause Haddie to be knocked out again and in turn will hurt her respiratory progress. Plus she really hasn't had seizures for a while and we think she can get off of the meds entirely after a bit. We voiced our concerns but he think it won't hurt her breathing and will also prevent seizures. We aren't very confident in his decision but we are going with it. They start to raise the level of the phenobarb tonight at 9. We will give this new neuro doc a chance. If he's right, cool. If not, we will let him know about it...in a Christian way of course :)

It's challenging at times to be our daughter's advocates. We want to trust the doctors since they went to school forever to make these decisions. But we also want to trust our 4 months of observation as well and make sure they get the decisions right. Sometimes we just gotta trust God and see what happens.

All that said, it's a good day. Haddie has that breathing tube out and is looking good. We just want it to stay that way. Thanks for the prayers. Have a blessed weekend!