One of my biggest sources of stress is the thought of what would happen if N needed medical treatment and I wasn’t there. This could be the case if I am physically absent (daycare, babysitter, etc), or if I was somehow incapacitated (car wreck, etc). I worry that first responders wouldn’t know if certain treatments were dangerous to him, or if there was something extra they needed to do given his medical history. In order to combat this nagging fear, I’ve actively taken steps to ensure his conditions will be known to first responders in either scenario.
First and foremost, I’ve filled out my Medical ID on my iPhone. This is a standard app on the iPhone; it’s a white square with a pink heart on it, and it allows you to fill out your medical information in case you are unable to communicate with first responders. It’s accessible even when your phone is locked. All you have to do to see someone’s Medical ID is to hit “Emergency” on the “Touch ID or Passcode” screen, and then access the Medical ID on the bottom left of the screen when the white dial pad appears. I’ve put my own medical information in here, but I’ve also put comments about N in the “Medical Notes” section. I included all of the basic medical information people need for treatment and paperwork: his full name, date of birth, transplant date, medications (name of medication, dose, and time dose is given), allergies, blood type, and the phone number to his transplant team and his transplant nurse. I’ve also put that he cannot have live vaccines and which ones he has not received, which will alert responders to his immune suppression and exposure risks. There are comparable apps for Android and Google phone users, as well! And what makes this app that much better is that you can actually register and document your decision to be an organ donor right there in the app!
The second action we took was to provide his daycare with a copy of his post-transplant care binder. This helped the providers to fully understand what all he went through and what all we are still doing to make sure he stays safe, healthy, and strong. It helps them fully grasp the gravity of the situation. I included all of the same information in my Medical ID on an easily accessible sheet of paper taped to the inside of the binder so that it’s the first thing you see when you open it. I also tabbed sections of the binder that are most important for his providers and those that would be helpful in an emergency (transplant team contact information, medication descriptions, etc). That way, if anything happens at his daycare, they can hand the binder over to the first responders and give them all of the information they’d need to treat him.
Lastly, we bought N some infant/toddler medical ID bracelets to wear. We decided to get ours from ZooBears, because they had sizes that were small enough for his tiny wrists. They are adjustable, as well, so they will actually “grow” with him. They have tons of fun patterns, different styles (leather, fabric, paracord, all kinds!), and they even have ones that are quite pretty for little girls who don’t want something so bulky. They have necklaces, shoe tags, diaper bag tags, zipper pull tags, everything you could possibly think of, and they’re hypoallergenic surgical steal, so they won’t corrode. And, best of all, you can get them engraved. We had ours engraved with the details that I listed above, so when someone sees the medical ID tag on the bracelet, they can find everything outlined on that little metal tag. He doesn’t really wear the bracelets right now, because he instantly took to teething on them. But when he gets a little older and quits gnawing on absolutely everything he can get his hands on, they’ll be perfect!
Knowing that there are multiple ways for people to have access to his medical information if I cannot provide it to them has eased my concerns over some of these “what ifs.” I encourage you to do the same! Remember what my Mama says: proper planning prevents poor performance!