I think you know life is going to be different for you when the pharmacist calls you on your cell phone to give you his home phone number. The pediatrician meets you after hours when your kid doesn't have any real symptoms of being sick. This is a big deal. Joel's life is a big deal. I'm not going to lie. We've been home for almost a week, and I'm happy enough that my cheeks hurt most of the day. But underneath all of the happy, I'm nervous. I know I have all of the knowledge that I could possibly absorb. I've memorized every word of my respiratory book. I triple check all of the medicines he's about to get, and I leave post-it notes close by incase I think I'm going to forget something....and yes, it matters that I'm prepared, but things that happen around here aren't always things you can prepare for.
Joel's sub-q port tape got stuck to one of his blankets, and somehow he managed to pull it out in bed. I put a new one back in, but in his bedding was a big puddle of blood. Blood thinners. It's a 30 gauge, I couldn't even imagine that much blood from one tiny needle poke, but it did.
I love being home. I have more things to be thankful than I even remembered while staying at the treehouse. I've planted flowers. I got out my sewing machine during naptime and made Joel a new blanket. I've been in the kitchen for hours and hours and hours....and I can cook without having to have the other kids in the same room as me. The kids are content. Adam is content. I feel like Joel is too....he's sleeping a ton. He's gained a pound since being home...his inline suction was on when he was weighed, so it wasn't completely accurate at today's weighing, but it was close.
Today we ended up in Joel's pediatrician's office after hours. His secretions have been thicker in his lungs, and albuterol really isn't helping much. Ricker called for a tracheal aspirate around 3, and Joel slept almost allday...so much that the nurse and I were worried. Dr. Dalan was super nice, and after getting all of his gear set up in the room, realizing we didn't have the right suction catheters...figuring out a solution, etc, we didn't leave his office until almost 7. I'm trying so hard to control fear today. Only God can number our days. God says do not fear.
It's not like I can just run to safeway and grab tylenol. It's a big deal. Everything is a big "scary" deal....or at least it is for the first trip to an unplanned appointment. Is this something I'm just going to get used to?