Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Tuesday, June 22, 2010

We are the new normal.

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 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?


  1. You couldn't be in better hands than that pediatricians office and I'm betting I could guess what pharmacy you use :) I've been there done that with a medically fragile child, our daughter was diagnosed with leukemia right after we moved back to Lewis Co. This was 18 years ago, she died 16 years ago but we've had 5 more children and have never considered changing doctors. My dh is now a NICU nurse at Madigan.

    Sharlene Hoffman told me about your blog and I've been following you and praying for your family.


  2. Unfortunately, it is, but you do get used to it and you will adjust. He is not in your hands, you are just his caregiver on earth so remember, you are doing everything you can and God has given you the tools, he has already planned Joels life so no matter what you do, it is according to Gods plan. Do what you can and remember to breath, it is going according to plans.

  3. First off, I love that you changed from the dark background on here, I assume to symbolize your happiness at being home!
    Second, I know it feels like you are drowning in paperwork and mess and the things that the PICU nurses used to do (and awesome job on the sub Q!!!!). But one day you will stop and realize you only DOUBLE checked his meds, or forgot one altogether and no major catastrophe occurred. :) Jason double dosed T on his Methadone and we called Dr. S. in a moment of freaking out and he sort of just laughed and said he'll sleep well tonight and let's just adjust his wean. No worries. It was then I realized things med schedules aren't in stone. They are an outline for me to make work in OUR life. You will suddenly realize you can go out without the giant binder to remind you of everything you are supposed to bring. The post its will diminish. (or maybe not-you're a mom after all:) )
    But the bottom line is you will adjust to your "new normal", because that is what it is. You get to be the mom whose baby gets to go straight to the exam room during cold and flu season at the peds office. The one who is known at a glance by every pharmacist (and they LOVE your baby and want updates just like all your friends). You're the one they call when they have a student pharmacist who would like to use your son as one of their case studies b/c his is so different. ;)
    Hang in there. I am amazed and encouraged by you daily. So thrilled you are able to do all you describe for Joel AND still have time to cook, sew and be a loving mom to your other beautiful children. Trust God and yourself.