Since I last wrote, we’ve only had two emergency room visits – one for Frankie and one for myself. I count it as a win that neither resulted in an admission. Frankie’s visit happened a couple of weeks ago. He had been growing more and more fussy, clearly uncomfortable, and we just couldn’t clear a stubborn mucus plug with our usual suction routine. Fearing he may have aspirated, we headed to the ER for an x-ray. Thankfully, it wasn’t aspiration, and a breathing treatment did the trick to loosen it. Within minutes of getting that loose, Frankie was back to himself and then some. He started dancing on the bed at the ER showing off what we’ve lovingly dubbed his “Elvis Pelvis” moves. It was a full-on comeback performance.
Since then, we’ve added those same breathing treatments to his routine at home to help prevent mucus build-up. In a couple of weeks, we’ll also be trialing an additional treatment in clinic. Life with a medically complex kid is a constant dance between worry and relief. Moments like Frankie’s joyful wiggles remind me we’re doing okay.
I took my own trip to the ER (in the ambulance no less) after a root beer float gone wrong. We had been talking about having root beer floats for Pioneer Day so I picked up some root beer and ice cream while I was at the grocery store. I noticed a pint of vanilla for $2 and thought that was a nice deal and didn’t pay much attention to the fact that it was goats milk ice cream. Just a few minutes after finishing up the float, it felt like there was a scratchy mass in the back of the throat. Soon my hands and feet and neck were painfully itchy, my lips were swelling, and my voice was almost entirely gone as my throat was beginning to close off. In 32 years, I’ve never had an allergic reaction like that, but apparently anaphylaxis was waiting to make its debut in 2025. We called 911 and they gave me epinephrine at the house and then off to the emergency room. We got it under control in about two hours and my cousin was able to bring me back home that night. Thankfully we were able to get a hold of an on-call nurse to help get Frankie’s meds administered while I was gone.
Other than these exciting adventures, the boys have been doing great. Henry is growing like a weed. Mom says he is a 25 lb sack of sugar. He’s got two front teeth in and has the most contagious laugh. Frankie is coming into his own, smiling and laughing, and just enjoying being home with family. Life is busy and we feel tired sometimes but routines are more familiar and comfortable now after being home for almost two months. We were approved for 24/7 nursing care by my private insurance which is practically unheard of. Praise God for this incredible blessing. The nursing company is still working on filling in these shifts but we’re getting closer to having full time coverage and that will be a big relief, especially to my mom who’s been living at the house with me to make sure we have two trach/vent trained adults at all times. We may actually both get a full nights sleep in the coming weeks.
Frankie just loves the outdoors. He really enjoys sitting under the tree in our yard and feeling the warmth, breeze, and seeing all the interesting things outside. I bought a water table for Henry to enjoy this summer and we’ve been spending a lot of time on the grass, doing water play, letting Frankie feel a little water on his toes, and sunbathe in his little grandpa hat. We’ve been able to make it to church most Sundays recently with both boys and they both enjoy that a lot.
We’ve been so grateful for my cousin Debra who’s taken Henry on little playdates every Tuesday while she’s been off work this summer. They’ve had such a fun time at the library, on the walking trail, running errands, doing music time, and so much more.
My grandma Evelyn passed away on July 5 and Debra also helped us with Henry at her funeral service. Here’s Cousin Debra and Henry enjoying an ice cream at Evelyn’s celebration of life.
Thank you for your love and support.
Amanda
