We are Home

We made it home today. It's been busy. Quinn got her PICC line in yesterday and she did great through it. she had no issues with her blood pressure or breathing. so that's all good news.

We were trained on a new glucometer and need to check her often adn when she is starting to look low. She's also now on carnitor and periactin and we give her cornstarch twice a day to keep her sugars in check.

As for the PICC, she's in a chronic state of dehydration. At first we discussed doing the TPN for her, but I think she just needs the hydration for right now as she is not low on her weight. Her stomach is crazy bad though. i don't know what to do about that and we were told not to expect it ot get much better... but there's always hope. We are hoping to avoid TPN and trying like mad to get her on a good plan to keep pain and bloating to a minimum. This isn't working too well as she's still in a lot of pain. today, she cried herself to sleep because of the pain. I'm suppose to cut off her feeds if she is in a lot of pain and her stomach is looking very distended, I then infuse her with her IV fluids to avoid dehydration. She also gets a maintenance of IV fluids every single day.

The PICC line care is incredibly overwhelming. There's actually so much I want to say, so much i want to write about right now, but I am just so exhausted and trying so hard to get a grasp on everything that is happening. I'm so extremely worried about line infections. I am incredibly terrified actually. And i'm so afraid of doing something wrong... like forgettting to remove all the air out of the syringe, or accidentally leaving an air bubble in the IV line. I'm so worried. what if she destoys it on accident? I am going to spend this week trying to get into a good routine and habit for her. Thank god she is not accessed all the time. I don't know how some moms do this as I am freaking out and pretty worried something will go wrong.