Last week was hard. If you follow me on Instagram, you’ll have known that Addison’s second extubation didn’t work. I thankfully didn’t stay in her bed space when they tried again, and had my parents with me for moral support. Mathew had to work, and I definitely knew I couldn’t do it alone. The doctor came out and I KNEW her extubation had failed. It hadn’t hit me right away and I stayed pretty calm. We’d talked to the doctors prior to extubation and the words “tracheotomy” and “trach” were discussed as one option if the extubation failed. It truly hadn’t hit me though, until I’d come back to Addie’s bedside and a trach nurse stopped by to tell me about trachs. That’s when I lost it and realized God hadn’t answered my prayer right away like I thought. What do you do when God tells you no? Or is it..”try harder?”
A tracheostomy is a SERIOUS and HUGE deal. My older sister has two amazing daughters (the best nieces an aunt could ask for), and one of them had a tracheotomy as a baby. Trachs are a lot. They require possible ventilators, nurses 24/7 in your home, medical supplies, and more. Not only that, but there is a lot of learning and care involved, it can cause high stress in a household, and Addie takes longer to heal than most. I prayed a lot before Addison’s 2nd extubation. I prayed endlessly from the day her first extubation failed until the doctor came back from her 2nd extubation. When the doctor told me it didn’t go well a second time, I wondered why God told me no to my prayer. Sure, I’d always said God wasn’t a magic genie who granted wishes, but still, I’d hoped with all my heart that she would be able to breathe with the cannula. It was a punch to the stomach knowing that my prayer seemingly hadn’t been heard. But then I kept thinking…maybe God is telling me to try harder.
Is a tracheotomy the only option? Should we get a second opinion? Would going to Texas Children’s in Houston be what we needed to do?
I made the decision to ask the doctors to come together for a big round table meeting. Our meeting is tomorrow at 7 am. We are going to sit down with all the doctors, Addie’s nurse, the trach nurse, my in-laws (my MIL is a Speech Pathologist), the Social Worker, and the Chaplain and hash out every question we have about Addison’s care. Mathew and I want to make sure we’ve done everything in our power to get the best care and options for Addison, and this is how we’re going to do it. It’s not going to be fun, it’s not going to be easy, but I feel it’s where God is leading us.
I can’t shake the feeling that God told me “no” to her extubation so we could “try harder” for better options and truly advocate for our daughter. I’m not sure what our meeting on Tuesday will hold, but I’m hoping that we can work something out besides a tracheotomy. Being away from home will bring it’s own set of challenges including Mathew and Addie not seeing each other except on weekends, being away from Pearl, among other things. It would be insanely hard, but only temporary and would bring us closer to bringing Addison home to live a “normal” life.
Please pray for us today and tomorrow that Mathew and I will make the right decision for Addison’s next step in her care. I so desperately do not want her to have a tracheotomy (though I will if that is the only option). Please pray that other options will be available and that we will be able to do what’s best for her so that she may thrive and grow at home sooner rather than later.
When one door closes, another opens. God…I’m listening. I will try harder. Help guide the way.
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