We just got back from our road trip out to California. It was relaxing, bonding, and, as my husband put it, empowering. We only had one small snag at the very beginning, one and a half hours into the trip in fact, when I realized that the one thing I had forgotten to pack was Maaike's oxygen tanks. It was definitely one of those, "you have got to be kidding me!" moments. I didn't forget the sunscreen for the beach or gummy snacks for the car, but I did forget a major piece of life saving equipment. After a relay of calls from the top to the bottom of the state, two oxygen tanks and a trach clip where reserved and loving placed in an unlocked vehicle for our after hours pick up in an up coming town. Disaster averted. On to fun and games.
Maaike only uses oxygen when she is sleeping so we would hook her up to the rental tank and drive as far as we could while she snoozed.
We kept the pulse-ox in between the front seats to watch her stats.
The mirror above her seat is an absolute essential. That way I can watch her pull off her "nose" (HME) while I'm driving and hopefully see where she throws it to retrieve it when I pull into the emergency lane.
On our first day at Disney Coy said we were, "probably the only people here with a kid with a trach." I said we probably were, but who knows. On day two we found out we weren't as a little boy in a stroller passed us with his trach and matching suction bag.
Glad to see it's possible to travel. i actually passed up the opportunity to go to California to visit my mom because the thought of traveling was overwhelming. maybe next time I'll build up the courage.
ReplyDeleteAwesome and inspiring blog. My baby girl has just been given a trach due to a large tongue caused by a genetic condition. I've loved reading your blog and shed a tear over some posts.
ReplyDeleteYour daughter is amazing and i hope she has an amazing life despite the challenges she faces.