Just wanted to give everyone a quick update. After going through several of Piper's episodes last night, she started running a very high fever so we once again took her to the ER. They worked with her to get her fever back down and as we came to discover, her "not breathing" issues were actually a different kind of seizure than she had previously been experiencing. After stabilizing her, they transfered us to downtown Dallas where we've been since last night. She is doing better, but still has a lot of respiratory issues. Now we are just waiting for her condition to improve further before we get to the next set of decisions.
What are those you ask? Well this is a blog, so I guess I'll tell you.
Because this is a degenerative disease, normal body functions either don't work at all or deteriorate over time. For example, Piper has never been able to roll over or hold her head up. She can drink from a bottle, but that skill is starting to diminish making it difficult to get her the nutrition she needs. We also need to give her all of her medication by mouth, which includes two different presciptions to control her seizure, but with her declining ability to swallow even this is becoming a challenge. So the only real option we have at this point is to have a G tube (gastric tube) surgically placed into her stomach so that we can feed her and give her medication.
Here's the rub. She needs the G tube so that we can continue to feed her and give her the medication to help with her seizures and reflux, etc., but because of her condition, she is at high risk to not even survive the surgery. Further complicating matters is that the doctors won't perform surgery on her unless her condition improves. So assuming her condition improves, we can take her home and continue to feed and medicate her and maybe get her strong enough for surgery. But if her condition worsens, we may not be able to perform the surgery, which means we won't be able to give her the medication, which means her seizures will keep getting worse. Or we decide to have the surgery as soon as we can and risk her not surviving.