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1 - Stomahesive powder. Get some. Declan's g-tube stoma was always immaculate. How? That powder. Generously apply the powder around the stoma after every cleaning and voila, no more redness and irritation! 2 - Reusable gauze. Split gauze always fell off of Declan's stoma. We'd tape it, but it just didn't work that well. You can get reusable pads on Amazon or Etsy, that stay on and work a lot better. 3 - The little blue tip that comes with the 60ml syringes? Ok, not all o

Things I wish I had known as a new trach mom. 1 - Vent Sleeves are a thing. You know how you have to drain the tubing constantly? Especially on a night you don't have nursing, getting up just to drain the tubing and the water trap is obnoxious. And.... unnecessary! Ask your DME to send you a sleeve for the tubing. I don't know why they don't offer this information up. But the sleeve acts as a sweater and reduces the amount of condensation, which reduces the amount of sa

According to the Cleveland Clinic, Risk factors for child abuse include: Living in poverty, being younger than 4 years old, and having special needs. Yep, the more vulnerable the child, the more likely they are to be abused. 1 - Unexplained Reactions. If you see a child reacting negatively and intensely to a specific person, regularly, that is a RED FLAG. Even if a child doesn't particularly like someone, they are not going to have extreme reactions to someone who isn't

I really thought I'd learned my lesson. To just BREATHE. To sit in the discomfort and take a beat. Old habits die hard, I guess. My control freak, fix it tendencies reared their ugly heads again. Grief is an unbearable place to sit. And watching Nash struggle adds to the difficulty. To help myself climb out of the pit of despair I was wallowing in, I started grabbing on to things I could do now that I couldn't before. It has been good for me to focus on other things.

Since we lost Declan and have been finding ways to cope with our grief, I got Nash a dog. This dog has been a blessing and a curse, and deserves her own, separate blog post. But she has helped highlight some issues that I didn't even know were there. I know that siblings of medically complex children have their own sets of issues, but I never really realized that Nash should be included in that bucket. I thought that we had done a better job, that we'd protected him bette

When Declan was born with a rare disease, just finding a diagnosis was a journey in and of itself. The fear of the unknown was almost paralyzing. Like a lot of parents, we thought that we were in the clear. We'd done genetic testing, and we were healthy. But what we didn't know was just how many diseases there are out there, and how many don't even have diagnoses. During our search for answers, I reached out to my friend Matthew Might . Matt and I went to college togethe