They attempted to turn down some of her support settings, but had to go back up. She isn't ready, and no one wants to push her. The good news is that she no longer needs sedation to relax. She's still getting steroids, antibiotics, Albuterol, and lots of CPT (chest percussion therapy/chest physiotherapy) but they seem to be helping.
And it seems that South Davis is really going out of their way on this one. The Respiratory Director, Rick (one of our favorites), is really diving in to determine what could have been done differently, and is also searching for a possible way Norah could have gotten sick. He is always great about investigating situations. He's also spoken with nursing and his RTs to get the full picture of what led up to Norah going back to the PICU.
Once Norah got sick, I don't think this trip to the PICU was avoidable. She has zero reserves in her lungs, so any interference or setback is a huge deal for her. It hits her exponentially harder than a healthy baby. BUT - the transport could have been handled differently. From now on, they're going to send off for Life Flight ground transport if Norah is in respiratory distress. When we left SDCH, Norah wasn't nearly as bad as when she arrived at PCMC. I am pretty sure it was from improper bagging, but I'm making sure that is addressed.
I also think I need to be pushier when it comes to troubleshooting Norah's issues. I had spoken to various SDCH staff members (mostly RTs) about things like trach changes, x-rays, and only using her bag with the PEEP valve, but my suggestions were all dismissed. I should have been pushier. I have learned my lesson. After all, when we did change her trach shortly after admission to the PICU, we found that there was a semi-soft plug in her trach that was interfering with ventilation. So while I prefer to be friendly and work with everyone as a team, I need to learn when it's time for no-more-Mrs.-Nice-Mom.
When it comes to your kids, you gotta speak up. I have actually walked out on appointments because i didnt like the dr. When alex was in picu last yr there was a nurse who seemed to think it was ok to stick a needle in his arm and SEARCH for his vein. After 2 or 3 min of this i told her to take it out and find someone who could do it right. She didnt. I then told her if she didnt take it out she was going to be picking herself up off the floor. Amazingly she took it out. Someone else came in and did it in about 2 seconds. I dont feel bad for what i said, im his mother. Therefore you should NEVER feel bad or try to be nice if you think its not going the way it should. Always speak up. It could save her life.
ReplyDeleteShauna, I am here from Kelly Pack's blog your Norah is adorable there is another blog I read that I thought you may connect with. it is about little Piper jane who also requires living on a vent. I think her condition is diffrent then Norah but there are some thing's that may still be interesting for you. if nothing else she is adorable and her mom Regan is hillarious. (regansblob.com) hope Norah continues to get stronger and stronger so she can come home with her family. What a sweet blessing she is which is completly obvious from all your pictures:)
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