Cost of Medic Alert Bracket: $ 9.99
Peace of Mind: PRICELESS
His Bracelet - it's the smallest standard size available
It's a personal choice whether or not a mito child wears a bracelet. We decided Bricen needed one for several reasons:
- Bricen suffers with lactic acidemia (caused by mito). This means his lactic acid is chronically high. The standard protocol used by EMT's and ER's across the county in case of an emergency, is the use of IV solution called Lactated Ringers. The infusion of an IV solution pumped full of a type of lactic acid, into a little body who's lactic acid runs high, can reek havoc. We're talking about an outcome that can be fatal. On the flip side of the bracelet, the first words are "NO LACTATED RINGERS". So, if we're unable/unavailable to yell, "no lactated ringers", his bracelet will yell for us!!
- Bricen talks, but has limited verbal skills. He doesn't answer personal questions (name, phone number, parents, etc). If he falls or bumps into something, he's pretty good about telling where he hurts, but lacks the skills to tell us about internal pain. If it's apparent something hurts, you can ask "does your stomach hurt" and he'll reply "yes". We thought he had reached a milestone until we asked "does your head hurt" and he also replied "yes". Medic Alert suggested putting "Limited Verbal Communication" on the bracelet. This will be helpful not only to emergency personnel, but in the (unlikely) event Bricen is lost or wanders off.
- Bricen's Protocol Letter from Dr. Koenig is only a phone call away!! The letter is attached to Bricen's file to ensure Dr. Koenig's medical instructions are followed.
Those are only three of the many reasons, Bricen sports a shiny bracelet. If you ask him what the bracelet says, he'll responds "it tells all about Bricen".
It's a bittersweet blessing. The pain of knowing he needs a bracelet to, perhaps, save his life, coupled with the relief he has a bracelet that, perhaps, will save his life. Such is life with mito.
KayTar isn't supposed to have LR either...she had it with her sedated MRI recently and had a bad reaction (hypoglycemia that was very stubborn and almost landed her in the ER).
ReplyDeleteGlad Bricen has this! KayTar had one for a while when she was nut-free and it made me feel better to know it was out there instructing people when I wasn't there! It is too hard to fit all her random diagnoses on there now and I don't think anyone knows what to do with "uncharacterized metabolic myopathy". ;)
Same here, and those bracelets can be made really tiny, can't they??? Glad he finally has one to keep him more protected with good info about him. Garrett's has no lactated ringers and no depakote on it and says he has mito.
ReplyDeleteHe never missed a beat and loves to use the bracelet to tap out rhythms on the lunchroom table at school and at the table at home!!!