by I don’t know if I’ll ever get used to this new life.
AJ pulled his trach twice this week. Actually now that I think of it, I think he’s pulled it every week for a month now.
Sometimes you can just replace it. Other times you end up having to call an ambulance and try to stay calm as you’re waiting for help and bagging your kid full of oxygen and back to life. Either way, I’m usually having to remind myself to breathe after he’s recovered, wanting to snuggle and demanding his iPad, typically carrying on like nothing even happened. Like it’s just “normal,” whatever that is.
These smiles make the craziness worth it. The late/sleepless nights, the hours of preparing special food and drawing medicine, iep meetings, hauling medical equipment, doctor and therapy appointments, financial obligations, coordinating supplies with the DMEs, hours on the line with the pharmacies and insurance companies, trips across the country, surgeries, stress and then some… they all practically vanish when AJ experiences something new. His eyes light up, he points, he bounces, and he smiles the biggest cheesiest grins that you can’t help but to smile back at.
For my praying/good vibes sending friends— please put in a good word for AJ that he stops yanking his trach out. It’s never intentional, but the more mobile he’s becoming, the easier it is for him to get his tubing stuck and pulled on. As you can see, we aren’t far off from him figuring out that he doesn’t need the walker or someone’s hands to stand up and take off…
