Tuesday, March 13, 2012

In Case Of Emergency...

This morning I met with the school nurse at Brian's pre-school. I gave her the official sheet with information on Brian's nut allergies along with our emergency contact numbers. I also attached a photo of Brian taken on his first day of school with his green backpack - just so she'd know who he was. As we chatted, I expressed my desire that everyone be on the same page if anything were to happen. She offered to conduct an inservice with Brian's two teachers and his speech therapist - which made me much more comfortable. During the inservice she will go over what the steps would be if he were to have an allergic reaction - and how to use the EPI pen. The pharmacy gave me a "training EPI pen" which will come in handy for babysitters and anyone else in Brian's life. I'll bring that in for the nurse to use in her inservice.

At home, I created emergency boxes for both boys. They are stored in the cabinet right above the phone and easy to grab for either child in an emergency.

The night of Gavin's seizure with police and paramedics in our home, I realized just how helpful these boxes would be. In Gavin's box I have a package of the rectal Diastat (which is liquid Valium, essentially) in case he has a seizure lasting more than five minutes. I also have a new package of Lacrilube - the over the counter eye ointment he still needs once a day to protect the fragile cornea in his left eye. I also have copies of his primary insurance and his medical assistance cards.

Then I wrote out pages of information including birthdate, address, emergency contacts...pediatrician, allergies, medications...a section called "About Gavin" which you see above...and the name and number of his main doctor at DuPont Hospital.

In Brian's box I have his two EPI pens and a bottle of Benadryl stored.

I also have a copy of his insurance card, the "Food Allergy Plan" from his allergist with her name and number and instructions for the EPI pen. I also typed out the same information as Gavin's sheet and included the fact that Brian has a speech delay.

I really feel like it would be important for medical personnel to know what your children's "normal behavior" is. I would hate for them to mistake Gavin's low tone for something else. Or to think that his lack of eye contact meant something. Or even to think that Brian had slurred speech which meant something that it didn't. I tried to cover all the bases. I encourage all of you with young children to do this. Having been through an emergency - I can tell you that even someone who is normally calm in scary situations (like I typically am!) can panic and forget basic information. I would never expect someone caring for my children to remember all of this! The boxes give me a sense of security that I can leave the house again.

When I first thought of making these emergency kits, I posted the idea on Facebook. I can't tell you how grateful I am for Facebook - it's been such a great place for me to gather information from friends...many of whom came from this blog as readers and now feel like family! One 'friend' happens to be a paramedic. He was so generous to write to me with a rundown of what they typically ask when they get to a scene. If you are looking for a template of sorts to make your own emergency kit, here's what he sent to me. Thanks, Tim!

Name, birth date, Social Security, address, phone number, primary care physician(s), naming specialists would be a good addition, hospital preference, insurance information, emergency contact (thats more for the ER).

Clinically (for medical) we use acronym of OPQRST.
Onset (what was the patient doing at the onset)
Provocation (anything make it better or worse?)
Quality (what does the pain feel like?)
Radiation (Does the pain go anywhere?)
Severity (How bad is the pain? 1-10 scale, 10 being the worst)
Time (How long have "you" had the pain?)

Secondly, we use SAMPLE "history"
Allergies the patient may have (Needs to be in your packet!)
Medications currently being taken (Needs to be in your packet!)
Pertinent Past Medical History (Obviously, needs to be in your packet!)
Signs and symptoms- things associated with the complaint.

I tell my student's to think of things associated with that part of the body, example complaints would be abdominal pain, head pain or chest pain.
Last oral intake, the last meal and or last liquid intake
Events leading up too the complaint, this can be related at times to the O and T in the OPQRST.

Hopefully we won't run into an emergency with either child (or either of us!)...ever. But being prepared definitely gives Ed and I (and Miss Sara!) a sense of confidence going forward. I hope this is helpful to some of you!

ps... tomorrow I have pretty exciting Gavin news! And some adorable photos of my little 'Chirish' leprechaun!


  1. Brilliant idea, Kate! Can't wait to see tomorrow's news and photos!

  2. Holy cow! Can we say overboard????? Gavin had a febrile seizure from the high fevers. You just need to chill and move forward. There is NO way I could parent like you. My kids would have no life or independence.

    1. It's amazing to me how easy it is to criticize while remaining "Anonymous." Either grow a set and state your name or you should really keep your mouth shut since you're too chicken to even say who you are. You may think Kate goes overboard, but at least she doesn't hide who she is.

    2. Actually "Anonymous", Gavin WILL have an AMAZING life because of the way Kate parents him. You are obviously very uneducated in the needs of children who have been born with special needs. I would try to enlighten you but I have a feeling you wouldn't get it anyway. Sad.

    3. Being the daughter of a man who had been born with CP, rhuematoid arthritis, and was quadriplegic, I can't begin to describe how wrong you are, Anonymous. Everyone is entitled to their opinions, I guess, but does that give anyone permission to lambast in such a hateful way? This might be new to you, but there are real people at the other end of your comments. I know, shocking...

      To speak to your opinion behind the comments... children don't learn independence from a LACK of routine. My Grandmother raised six children, including my father. It was a strict, traditional, household. My father would not have been half the man he was without his fierce and lion-hearted mother. She broke down every barrier in his place, but you better believe none of that would have been possible without so much structure in the house. I see these same strengths in Kate.

      Routine might not work for everyone (I can't see how not, but to each one's own, I guess), but it's not your place to decide for the rest of us. Mind your p's and q's the next time you aim to be so insulting...

    4. After having gone through a double lung transplant, I fully understand this concept...because I live it everyday. But...it doesn't control me or prevent my independence. I simply prepare for emergencies and carry information and meds where ever I go...just in case. I love what Kate has done. I wish every parent with a child who has even mild previous medical history status' to prepare for future emergencies. Doesn't mean the parents, family members are neurotic - it means they are wise. As a first responder, I have seen how easily confused people get in a crisis situation. Annonymous, I can only pray that you, or your loved ones have prepared with simple first-aid, CPR, and or have a live-in 24/7 nurse in your home. When that first scary moment comes, you will NEVER want to be unprepared again. Praying for your future well-being, and hoping that others reading will recognize the wisdom of Kate's post and In Case Of Emergency (ICE) Box.

  3. I agree with anonymous.

  4. Wow! As a former EMS worker, I think that's awesome that you have kits for each child. SOOO helpful.

    Also, ignore the haters. Your children are LUCKY to have a mom like you. I'd be happy if I can do half what you do for my baby. Keep up the good work :)

  5. This so wonderful! I had an ER with my daughter and could not remember anything. My friend was a nurse in the ER for years and she told a story about a parent that remember to grab their info box on the way out the door to the ER and it was so wonderful because in the moment most ALL parents can't remember anything! Funny you post this because I was just in the ER with my 24 year old niece and she couldn't remember her own zip code!!!!!!!! You are awesome!!!!!!!!!

  6. As one of Gavin's physicians, I am pleased that Mrs. Leong took the time to make an emergency kit for Gavin. It is always worrisome when kids with underlying neurological issues have a seizure. And she's right that his risk of recurring seizures is higher after the first Febrile. A Febrile seizure is not insignificant. If she and her husband weren't home - this kit would be invaluable to a medical team that didn't know him. I never comment, but I can tell you that she certainly did not go overboard with this. As a matter of fact, she's a Mom we are proud of around here for what she's done for both of her kids.

  7. Kate, the haters reveal more about themselves and their own arrogance than the "truth" about you. They haven't walked in your shoes. The next time they need kindness or understanding and some small fool kicks them in the nuts out of ignorance instead, I hope they think of you.

  8. Kate, this is wonderful and will be invaluable in an emergency. People who leave rude comments obviously have no foresight or experience on this issue. It's unfortunate that your other anonymous posters have such a meaningless life that they would comment negatively on the good that you are doing not only for your own children - but for others as you spread valuable information to all of us.

  9. As a fellow mother of a child with special needs who has seizures and has had prolonged seizures that require Diastat and a call to 911, I think this is a great idea and I wish I would have thought of it earlier for my own family. This is a great idea and really any family should have at least the envelope with all of the important medical info in it for emergencies. I have made a care binder for my child to go with him to Grandma's or other caregivers home and to stay in a visible place at home in case of an emergency. After having to recite all of his meds way too many times I finally put the info in a document and just update and print out for our Dr. visits etc. When you have a child with special needs and a child with a life threatening allergy you cannot be too careful. And to kudos to the physician for backing Kate up.

  10. Kate I feel privileged I could help you, and from the looks of it you ran with it! Those kits are amazing. Speaking from my EMS vantage point, coming to a call with someone with as many special circumstances as your dealing with, those kits are quite literally a life saver. In the event that no one is around that knows the questions I supplied you with, your kits make up for it. Too many times we show up on a call and we have nothing to go on. On the other hand, too many times we show up and the parents simply don't care. They don't know and lack basic knowledge, and lack the ability in my eyes to be a parent. Some people don't know basic information about their children, things kinda complex like meds or allergies, but as simple as a birthday...HOW DON'T YOU KNOW YOUR KIDS BIRTHDAY??? Now speaking as a future and expecting father, I hope Beth and I can be half the parents you and Ed are. Honestly. And for this anonymous dbag posting that your over bearig and protected? Seriously grow up. Your just jealous cause A. You didn't think of it first and B. I bet you wish YOU were half the parent this woman is, or maybe even an 1/8. If you dont like Kate's blog, then google how to color inside the lines and take a lesson.

    1. This is not a sarcastic comment, but a parent may not remember basic information for a child if they are really panicked if there's a true emergency going on. It happened to me before so please, don't bash people for that. I know I am a good parent with a special needs child. I am sure, as you are an EMS worker who sees it all, you can say that in some circumstances. But not all parents don't care. Many of the moms that read Kate's blog only wish we could be half of what she is to her husband and children. But...we all try our best!

      I don't address anonymous comments because it only gives them the negative attention they are looking for.

    2. I believe Tim was talking about the parents out there that really don't care, not the ones that are in a state of panic. EMS can tell the difference. =)

      Kate those boxes are amazing. I am a mom, I have worked in special ed and I am now currently working as a hospital tech, those are NOT overboard, those will save the life of your child if God forbid they are ever needed. Anonymous is uneducated, end of story, and I also believe they agreed with themselves in that second comment, because no one else would.


    3. If you could *like* replies on here, then I would *like* this one and the reply from the doctor above :)
      The kits are a brilliant idea and I'm going to pass this information on to my daughter for her kids :)

  11. Kate - everytime I read your blog I'm thankful for something I learned from it. You do the most amazing things with and for your boys and your entire family. These kits are a wonderful idea and every minute you put into them helped to make them as perfect as they are...I actually think you should submit this whole idea to a couple parenting/family fun magazines. You're destined to be published in many ways and this one could help save the lives of children out there. I'm sure other mom's haven't thought of this (like myself) but will certainly do it because it makes sense! Great job for your efforts & investigations to make it be the answer to many and any questions that could come up and lastly, your children are two of the luckiest kids around - their smiles you capture in the photo's you post prove their happy for it as well. THAT is what matters. One day they will truly appreciate the LIFE you gave them and will cherish theirs because your actions and combined awesome, commendable parenting with Ed will make them INDEPENDENT human beings with bigger hearts and caring minds than anyone out there who can't SIGN THEIR OWN NAME! What you do for them is exceptional...the fact that you share it all with us makes YOU exceptional, too! xo

  12. Kate, I think the emergency kits are an absolutely wonderful idea! I think I might make one for my aging father as well. There are so many ways this could help to prevent a tragedy. As for the food allergies, I might be hesitant to use acupuncture to treat the intolerances. Acupuncture certainly has its uses, but as a food allergy sufferer myself, I would hate to try anything without my allergist's recommendation because the side effects are so severe. Just a thought.

    Keep well,

  13. I'm so sorry you're having to deal with the seizure and allergy issues. It certainly adds to your stresses, but how you rise to the occasion!! Looking forward to hearing more about your journey here, and the emergency kits are wonderful.

  14. In address to the anonymous I actually think Kate's kids can have MORE independence because Kate has the emergency plan already in place. No thinking or panicking (well we know there will be BOTH but not as bad with the kits! LOL) just grab the kit and go.

    Now there is less fear of what may or may not happen and everyone can focus on the all the fun.

    Another Great Job Kate and once again I am in awe that you find enough time in your day to do all these things while still being a hands on mom and wife.

    Love you!

  15. Hi Kate. I came over to this post off of your "mad" post.

    This is great!!! Thank you for shaing it! What a great idea and sense of comfort!

    Big love to you and God bless you.

  16. Kate, I linked to this post from today's, as well, and want to encourage you to keep it up. Be mad, even in what is an emotionally exhausting time. And don't give any further energy to people who think they are entitled to give you parenting advice - on YOUR blog. The audacity of that is disturbing.

  17. Hi Kate,
    I came from your mad post too, and I LOVE the kits! As a special needs parent, the information that you've provided (and Tim's template!) is SO helpful! I am the sort of parent that remembers everything medical, but I know my husband isn't, and doesn't remember. Having that sort of information at his fingertips, now that I'm working, is invaluable! If something did happen while I wasn't at home, I don't want my husband fumbling for the phone for me, while trying to keep our child calm, and give info to the EMS... I want him to have it at his fingertips.

    RE: Anon's comment... shove it! You are obviously not a parent, or at least, one who cares... Find another blog to troll... really.
    And honestly, I hope, that you've come back, and read what Kate's gone through, and I hope you feel horrible!!!

    I'm going to copy your boxes!!!

    1. Oh, and the fact that Gavin & Brian's Doctor posted...THAT says something!!! The words, so kind and honest... truly amazing!!!

  18. I came from the "mad" post as well (I am a fairly new blog reader). I can't believe people would have the nerve to write something so harsh. I don't have a special needs child, but if I were to take care of one I would be GLAD that their parent would make such an awesome list, etc., for me. You are an awesome person. Gavin and Brian (and the new baby) are blessed to have you as their mom. Gavin's always watching over y'all <3

  19. My mother lives with us due to her health issues. I love this idea, I'm going to make one for her! You rock Kate! Your family is blessed beyond words to have you!!! <3

  20. I love this idea... I have a sitter that this would help all
    Also if grandparents take them
    My home-based daycare does something like this and it is wonderful.


  21. My children are now in their late teens. They have had their share of ER visits - not always accompanied by me - the mom, the Keeper of All Sacred Information Including Social Security Numbers and Zip Codes... My children have emergency info, medical power of attorney, etc, in the possession of at least half a dozen adults at any given moment. They also had an emergency box that travelled with them while anyone was under care for any condition.
    Laugh all you like at the overboard-ness of the moms who make sure their child who has some interesting medical history (in the case of one of my children, or not, as in the case of the other one), but you will find that we have managed the situation in such a way that we, as people - humans, who sometimes require fresh air and sunshine, and even five minutes of it without the accompanying minors we produced, are able to take a few minutes, or even a few hours, and leave our children in the care of Dad, or Grandma, or a Babysitter - and actually relax and enjoy ourselves. We do not throw up when we realize we missed a call from the sitter 5 minutes ago because of the subway.
    We are not so ego drive that we even bother to think that we are the sole source of anything for anyone in our lives, much less the sole source of Everything, for Everyone. We empower the people in our lives to be able to fully participate by freely and transparently giving information and access to it. We do not hoard information, we do not hide out.
    There comes a time when you have to think about who you are judging, and why...

  22. Kate as a mother of 3 I would like to tell you that you inpire me in so many ways. I think the boxes are a wonderdul idea! I will be making my own soon for myself and others to use while my children are in their care.my oldest had a febrile seizure while ar her grandmothers and I never understood the severity until I found your blog. My twins have some issues due to premature birth at 30 weeks and I have had to try to remember everything for their teachers and family as they have grown. Just wish I would have thought of this earlier. Thank you for sharing your family with us and all that you have been through. I only hope that I can be at least half the mother you are to your wonderful children. Your childrwn are so lucky to have you and Ed in their lives. Never let the nay sayers bring you down...because you arw amazing and your kids were given to you for a reason...you are the best mother they could have. Much love hugs &respect sent your way!

  23. Thank you for this wonderful idea. It is such a simple concept, but extremely important for a parent with special needs or any parent. A few months ago my nephew, who has CP and a rare genetic disorder stopped breathing suddenly. His nurse was with him. She called 911, but couldn't tell them everything because she was nervous. Connie is a wonderful nurse. This situation never made me think ill of her, as one of Wyatt's providers I would have forgotten information as well. In an emergency situation it is important to know where things are. Next time Wyatt may not be as lucky (we don't believe in luck, but instead faith). I will prepare a box like this for him and my own children. Thank you.


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