More new things have become part of our routine since last Friday. When we got the news about your pseudomonas infection we were told it would take a few days to get everything lined up in order to start the TOBI treatment and Cipro. On Friday we received the nebulizer from the local DME company. Ouch. I told the man (that your Dad worked with years ago when he worked for the same DME company!) that I had never dreamed I'd see him in my house. Earlier that morning, I walked away from the pharmacy with a *grocery sack* full of your prescriptions after crying in front of the pharmacist because the overwhelmingness of everything new again spilled over. More ouch.
On Saturday evening I noticed that you were covered in hives from the oral Cipro we'd started. I immediately placed a call to OHSU, spoke with the dispatcher and the only doctor that has seen you so far *happened* to be on call. GRACE He said to discontinue the Cipro, that it was unfortunate that you couldn't take it but that the TOBI was the more important of the two medications to fight this bacteria. We were away from home when I noticed the hives and spoke with the doctor, and I reconciled stopping the Cipro with knowing that when we returned home that night a piece we were waiting on for the nebulizer in order to start the TOBI would be on our doorstep via UPS. However, when we got home it wasn't there. It would mean waiting until Monday to start. WAITING.
Monday morning arrived, the hives were mostly cleared up, you did not seem to have any other adverse reactions, and we waited for the last piece. WAITING. It arrived. I went to check the mail and OHSU had sent a package with other nebulizer parts in it. Left completely confused I called and was told they were just extra parts in case we needed them. It turns out they were the right ones we needed (due to sizing) and the part we had been waiting so anxiously for from UPS was not. I was left standing at our counter with nebulizer parts all about wondering where to start and what to use. Breathe. Pray. Lord, help. Overwhelming. But, like everything else so far, what seems impossible and scary initially is covered in peace so quickly. GRACE
The first TOBI treatment was awkward. How to sit? How to position you? How to give you the treatment, hold the mask, talk over the top of the whirring nebulizer, calm you as you fight the mask, and try not to breathe it all in myself...*sigh. There was chaos all around me with the little boys just arriving home from Grandma's and other activity happening with her arrival. In the midst, your grandma came to stand next to me as I was sitting on the ground in front of your swing and gently put her hand on my head. Such gentleness. It's often the knowing hug, the encouraging word, the gentle touch that speaks so much GRACE in those blind moments; the moments of everything new and foreign and scary. In true Kate fashion, you slept through most of the treatment with only a bit of a struggle at the beginning and end of the 30 minute treatment. Phew. We have now made it through four treatments. By noon today, life had righted itself in many ways. There had been emotional turmoil coming from multiple directions, and so much was resolved today. GRACE
My dear Aunt and Grandma came to visit today, loved on you, asked questions and enjoyed your sweet presence. What a gift you are every day, little love. You are teaching me so much. You are giving me such a different perspective about life, people, love, and time. So, what is this grace that I keep referring to, sweet girl? It is God's unmerited favor. It is kindness from God we don't deserve. I could say we don't deserve Cystic Fibrosis. It's just not fair, right? I could say you don't deserve to have so many medications going in your body each day, and you're not even sick! Not fair, right? Or, I can see how much kindness we don't deserve! God, help me to always see where grace is being given and when I need to give it. There has been so much unmerited favor shown to us through strangers and friends alike during these days. I am so thankful, Kate, that your life is a conduit of so much goodness and kindness. I love you, my perfect baby girl!