I have to start off with saying just WOW and a huge Thank You for the amazing feedback on our Takeover Blogs shared by the two young women, Neeley and Ashley, these past couple weeks. They asked for their voices to be heard and you all listened! The purpose of the Blog Takeovers is threefold: 1) these stories are a way we can work to educate others on what life is like living with chronic illness from the patient’s perspective; 2) hearing the stories of others, works to take down any stigma associated with disability; and 3) these guest bloggers receive a platform to let their voice be heard! I have found the last one to be the most profound.
It takes a lot of courage to put yourself out there like they have done, and my hope and prayer is these girls find more confidence (which they already possess), joy, support, and peace in the path they are going down. If you are a teenager living with chronic illness or the parent of a child with a disability, that would like to share your story, feel free to email me at email@example.com. If you are nervous about writing, I can help you! No need to worry. Hope to hear from you soon. 😊
Now on to another new series we are starting here at the Halle Grace Foundation: Parenting Tips of the Trade! As a parent with children with multiple medical issues, I have learned a few things while raising this adventurous trio the past 21 years! I hope to start sharing some of these lessons learned in this new series. This week’s tip comes to you from yours truly and I like to call it, the Handy Dandy Health History. This is something that I came up with after being asked countless times to repeat Halle’s health history to any new physician or therapist. Not only did it take time to go through her lengthy medical issues at every new doctor’s appointment, hospital admit, or ER visit, but it was emotionally draining for me to relive those episodes and events, so often. I created a “Halle Health History” that I would give to new providers when we first met and asked them to review it and then ask questions. This way I could just fill in any gaps they had and not go through a litany of surgeries, tests, procedures, specialists…you get the idea.
We have since created Healthy Histories for each of the Heilman kiddos and add to them as needed. I recently looked up Halle’s old Health History, as a friend asked for a template of the outline I use. My last entry in Halle's History was June 2015…we had met with palliative care and said if this last treatment didn’t work, she would enter hospice. She passed away just a month later. This tool carried us through her entire life from birth to death. My prayer is no other parent will face the loss of a child but will eventually retire these health histories because their kids get better. God willing, but in the meantime, may this tool make your lives a little easier.
Below is the template I created for our kiddos – feel free to download it or share your own ideas in the comments below. Some of you may be asking why do we need a health history? The short answer is, you may not. These are most helpful with children with complex medical histories. But if you do think this is a benefit, read on….
1. Benefits of a Handy Dandy Health History
a. It is a quick summary of child’s health information. Doctor do not always have time to read through your child’s entire health history but offering them a quick glimpse into your child’s medical past can allow them to treat your child’s medical concern more quickly. I do not know about your kids, but the Heilman kiddos medical records are actually so lengthy that they have crashed our pediatrician’s online records system multiple times. In fact, Pediatric Healthcare Alliance had to get a new system just to accommodate the records of the Heilman’s. Go Big or Go Home! Needless to say, doctors tend to appreciate the abridged version of the Heilman medical adventures.
b. Perfect for emergencies. When our kids’ health was less stable, we kept a printout of their health histories at the front door in a basket. There were multiple times we had to call 911 for anaphylaxis, double pneumonia, choking, coding, and other emergencies and as the paramedics wheeled those kids out the door, I grabbed that child form as I knew my brain could not process everything in that moment. Quick story: Ben was 8 months old; it was New Year’s Eve, and he woke up at 2am grunting. He had a fever of 103 and his chest was retracting. We called 911 – paramedics were in our living room within two minutes. His chest sounds were crackling in both lungs. At this point, he had not been diagnosed with an immunodeficiency, but had been quite ill those first few months. The paramedic asked if Ben had any underlying conditions or anything important, he should be aware of. “He’s just been sick some since he was born,” was all I could get out, but handed him the health history I had started on Ben. As we were loading in the ambulance the paramedic quickly skimmed the summary – “Your son has had pneumonia twice already and coded on you at home at 2 months of age.” “Oh yeah, he did. I forgot that!” How does a parent forget their child coded a couple months ago – I was the one who resuscitated him for God’s Sake! But under stress, in the here and now, our brains don’t think clearly…. hence the importance of the Handy Dandy Health Form. As a side note, Ben ended up having double pneumonia and was in the hospital for three weeks with a bone infection that required him to have a picc line and IV antibiotics for six weeks. Having a good idea of his medical history before he even got to the children’s hospital, prepared the ER doctors, and helped them know what to triage when he came it.
c. Accurate record of all your child’s medical history. Parents do not have the memory of an elephant and will need somewhere to store all this medical information. If you are like our family, when you have multiple kids with medical issues, you may sometimes mix up who had what surgery when and what dose medication each kiddo is on. Not saying any names…. but…you did read the story above, right? LOL
2. Create a Health History
I create my kids in a word document and save them to a server. As they go through life and the various ups and downs of the medical world, I keep these histories updated. Here is the information I include and why:
a. Name and Date of Birth and Caregiver contact. This may seem basic, but the providers will put this in your child’s chart for reference and you want to make sure it has the basic information on them and you.
b. Diagnoses. I leave a lot of room for this one. Kids with complex medical conditions often have a smorgasbord of medical conditions. Some of Halle’s included: 18Q Deletion, primary immunodeficiency, Ehlers Danlos, dysautonomia (neurocardiogenic syncope), autoimmune hypothyroidism, hypotonia, moderate hearing loss…well you get the idea.
c. Current Medication. This can be a lengthy list too. Be sure to update this one as any new medications come on or off the list.
d. Allergies. This could include food, medication, or environmental allergies. Why do we include all these? Some reasons behind those chronic sinus infections could be chronic exposure to those allergens. I had signed Ben up for competitive soccer when he was 6 or 7. I thought, what the heck, I am at the fields with Neeley anyway. I might as well sign him up, so he has something to do while we are here. (I even add the fun stuff to his medical history like “made the competitive soccer team!”) That year, Ben had so many sinus infections, one that was so bad it embedded into the bone. He had been hospitalized for weeks to treat the infection and wheezing and they were trying to figure out why this had gotten so bad. In his health history, they saw he made the Soccer Team and was practiced several days a week. They did allergy testing and found he was allergic to grass…especially the type of grass he played on. Now that they knew the trigger, they were able to aggressively treat the infection with a picc line that administered six weeks of IV antibiotics, and he hung up his soccer cleats at the ripe ole age of 6. In case you were wondering, Ben has since tried out hockey, basketball, and swimming. Many sports that had NO exposure to grass.
e. Providers. Professionals will sometimes communicate with one another. Knowing who each of your specialists are and how to contact them, allows the treating physician quick access to that information and treatment for your child’s care is expedited.
f. Surgeries and Procedures. This is a big one. As many of you know, with complex medical histories, we get a plethora of tests, surgeries, procedures, specialist appointments and the like. It is important to keep track of all those. I also will note the results of the tests in the timeline so when anyone reviews the history, they can quickly know what was going on in that situation. It can take time to access medical records from other hospitals – the handy dandy health history keeps the continuum of care for your child on track.
g. Timeline. I include almost everything that would be relevant to any professional, again, that could be physicians, therapists, teachers, or counselors, anyone who may need this background information. The information I include could be special testing done (hearing screens, swallow studies, etc.), any procedures, hospitals stay, episodes of unusual behaviors, and so forth. You get the idea. When Halle was only a few months old, we noticed she had episodes where she would flop over and then wretch backwards and scream after eating. I noted that in the timeline. She was hospitalized soon after I had recorded a few of those episodes. When they read the timeline, they saw the weird behavior occurred around feedings and conducted a swallow study. It immediately showed silent reflux and frank aspiration. Food was going in her lungs multiple times a day, when eating and when the food would silently come back up. Halle was immediately admitted to the children’s hospital and had a surgery to tighten to the top of her stomach and had a feeding tube placed so we could safely provide her nutrition. They probably would have figured this all out regardless of my health history, but I truly believe having recorded the information in a brief format, and providing that to the ER doctor, directed their care of her more quickly and expedited treatment. Because of all that, she did suffer any long-term damage to her lungs. Again, with the timeline, you want the new provider to see the big picture of your child – to get to know who they are and where they have been. As a side note, I also include celebratory achievements like “Halle started walking” or “Ben graduated from Speech!” This provides a nice overview of your child’s journey.
3. What do you do with it Now?
a. Keep the health history on file. Be sure to update it as your child(ren) grow.
b. Take it to appointments. If your child has a new doctor’s appointment or a hospital stay, you will find having this detailed history will not only impress the professionals but will also make facilitating their care easier.
c. Place one by the door. We have unfortunately had to make a few 911 calls in our day. Whether that be for one of my kid’s coding, or an allergic reaction to an infusion…cases of double pneumonia at 9 months old or a choking episode that caused bradycardia. When you face a crisis with one of your children, it is difficult to think of anything, let alone the details of their complex medical history. It may be rare that you need it in an emergency, but it sure is nice to have it there.
If you think having a health history would help, feel free to download the Heilman Template, otherwise, have fun and create your own! Do you have any parenting tips you could share that you have learned in your journey of raising medical complex kiddos? We would love to hear from you and share them online! Just drop me an email at firstname.lastname@example.org
Until next time…