Preparing For A Medical Emergency With A Medically Fragile Child…

8 Mar by Mommy

Michelle over at 5 Minutes for Special Needs wrote this great article, and even though Hannah isn’t considered “medically fragile,” there were some very good tips for us in there since her diagnosis is so rare and most doctors don’t know what to expect with it.  Also, worst-case scenario, she may need a trach to breathe. I wanted to jot down some of the tips to keep them handy for me.  But if you do have a child with medical issues, definitely go over there and read this full article.

  • Make up a slim, easy-to-carry medical records folder for your child.  A plastic folder with clear plastic sleeves for slip-in pages works really nicely for this purpose. It should contain pages with provider names and phone numbers — including home-health, pharmacy and medical supply phone numbers, your insurance information, a concise summary of your child’s medical history, a list of your child’s allergies and your child’s medications with their dosages, copies of any prior authorizations from your insurance provider for medications, supplies, services, or procedures and a listing of your child’s medical procedures and their dates. Carry this with you everywhere that you take your child.
  • Contact the fire department that would respond to your residence if you called 911. Let them know you have a medically fragile child and provide them with information about your child’s medical needs. Especially important information would be letting them know if your child has a trach, airway issues, or a heart condition. Some fire departments will provide specialized training to their department if they know they have a child with a trach in their response area.
  • Pack a “Grab and Go” bag in case you find yourself on a midnight ambulance run.   Contained a change of clothes for my husband and myself, a small bag of toiletries, and one of each of our daughter’s specialty medical supplies — things we quickly learned that most hospitals wouldn’t have in stock. In our case, these items included a replacement trach (they never had the right size), a replacement G-tube (same story), a can of her specialty formula, oral syringes that fit her G-tube port or adapters to add to the hospital syringes to make theirs fit, a decompression tube with an extension to fit her G-tube, a small postal scale for weighing the powder to prepare her formula so we could be certain it was being prepared correctly, and three days worth of any of her medications we knew that the hospital wouldn’t be likely to have on hand. Twice a month we rotated out everything in our “Grab and Go” bag to make sure everything was up-to-date, washed, and ready to go. Make it a rule to NEVER “borrow” items from your “Grab and Go” bag.
  • Carry an emergency supply kit with you when you travel.  Your kit should be as compact as possible and contain the essentials you would need to change out a trach, a g-tube, etc., or to deal with a failure within a critical piece of medical equipment. Our kit was a shoulder bag containing four mini-kits, each in a separate gallon zip-loc bag: A trach kit, a G-tube kit, a pulse ox kit, and a suction kit. Each bag contained the necessary supplies unique to that kit, along with a 8×10 laminated card with the name of the kit on the card in large bold font. Each kit was assigned a different color for the laminated card so that it could be easily spotted and pulled out quickly in an emergency. To avoid out-dates, we rotated out the entire contents of each kit every month.
  • Get Certified in Pediatric CPR and First Aid.   A good place to find out information about how, when and where you can find training in pediatric CPR and first aid is through the company that supplies your durable medical equipment. Another option is through your local childrens’ hospital. If your child has a trach, make sure you receive specific training on how to provide pediatric CPR to a child with a trach and request to be provided with an ambu bag with a trach adapter. Make sure it fits your child’s trach and ask for training on its proper use.
  • Make sure you always have a CORDED phone on each floor of your house plugged in at all times.   Do your best to position the phone as close to the area where you spend the most time with your child as possible. The last thing you want to have do when you have an emergency is to run around looking for a misplaced handset or deal with a dead battery. Another option: Keep a fully charged cell phone on your person at all times.
  • If you have a multi-story home, consider investing in a wireless home intercom system.   Without one, you may not be able to get help when you most need it.
  • Have a CPR station on every floor of your home.   An alternative would be to have a portable one that you move with you to each room where you are spending time with your child. It should include a hard surface for providing chest compressions — the floor is fine, or if your home has thick padded carpeting, a small sturdy board will work (ours is a mini ironing board with the legs removed). Keep a bag with your CPR station containing a flashlight for helping to spot airway obstructions, a laminated card of pediatric CPR guidelines, a laminated card of 911 emergency directions to your home, and if your child has a trach, an emergency trach kit (a replacement trach and supplies necessary for changing out a trach).

    There were more in-depth suggestions suggested by Michelle over at 5 Minutes for Special Needs who wrote this great article.  I strongly suggest anyone in this situation head over there and print out the entire article.

    • ~ Filed Under: Hannah's Fight

    Comments

    1. laane says:
      03/08/2009 at 4:55 pm

      … and in case you have other children, always have a childsitter which can be called anytime.

      laane’s last blog post..Your bestest day

    2. Cindi ~ Moomettesgram says:
      03/08/2009 at 7:15 pm

      Wow, lots of good info here! Discovering your blog through MBC & fav’d you to Technorati!

      Cindi ~ Moomettesgram’s last blog post..Tips to Improve Your Blog Traffic: Change No Follow Attribute to Do Follow

    3. Alisha says:
      03/08/2009 at 7:31 pm

      What wonderful and handy tips.

      As for you post below, a group of women helped our friend’s family by fund raising when her daughter had cancer. When she passed away a month ago, that is when we started focusing on raising money for research. We have done several fund raisers in fact. I think that if you want to continue raising money for research, you should. If any one else in your community or else where would like to do a fund raiser to raise money for medical costs that your family has to, and will endure, accept the help. You can do both!

      Praying for you!

      Alisha’s last blog post..What do you think?