The very first thing I learned from other moms of medically fragile children was to keep a detailed medical notebook. I met these moms at the Ronald McDonald House where I went to stay when I was discharged after Ryan’s birth. Still doped up on pain meds and hobbling around from my c-section, I listened intently as they explained the importance of The Notebook.
“Get one with pockets and that zips.” one mom told me.
“Take it to all your doctor appointments and leave it in a convenient spot at home in case you need it in an emergency.” another instructed.
“Put tabs in it for all your different doctors and information.” they told me. “After awhile all the conversations with all the different doctors mesh together. Take notes as they talk, put the date, their name, and what field they’re in.”
I obeyed them. I went out and bought a notebook with masculine colors. One with pockets and zippers. I put tabs in and customized it to my needs.
At the very front is Ryan’s med schedule and dosings. All his doctors ask me for updates at his appointments. This is not such a problem now since he only goes to heart clinic every 6 months or so and only takes four meds. But when he came home last January, we visited the cardiologist every week and the pediatrician almost as regularly. He was on 13 meds. Even though I could remember all the meds, It was difficult for me to rattle off all the dosings and frequencies. Having a master list made it a cinch.
I included emergency instructions for the nurses and other caregivers (namely my mom and mother-in-law). It lists protocol and reasons for calling 911, the cardiologist, or the pediatrician.
And directions to his hospital in case I wasn’t there to drive. The last thing I wanted was someone having to think about how to get where they needed to be.
In addition to information from doctors, the nutritionist, and therapists, I kept records for myself to keep things straight. Here is an example of the Feeding OT I did with him in May 2009, five months after coming home. Looking at this reminds me the terrible time we’ve had getting Ryan to eat.
I kept charts for meds because when they are due every 2 hours, it all starts to mesh together and you can’t remember if you just gave them or if it was a few hours ago. This chart is from when I could see the light at the end of the tunnel…. You can see he’s only getting meds a few times a day and by the 24th he received his last dose of Methadone. Yeah!
I also kept a chart for personal care like when he got a bath, when his NG tube was replaced and any other miscellaneous information. This one may seem silly, but honestly, there was so much to remember I would forget easy things. Writing it down kept me on task for keeping the boy clean… and boys get stinky!
I still have Ryan’s notebook. I don’t refer to it nearly as often since he is stable. I use it to file doctor’s notes or county program information. But I’m glad I have it. I highly recommend a system like this if you’re facing a family member with medical challenges.
(c) 2016 Leighann Marquiss
Comments (8)
Wow…that really would have been great when Hope was born. I wish I had done something like that. I kept a little journal, but there are so many pieces of paper floating around this house…ughhh!
Thank you for sharing and I hope new moms read this before they start their journey.
This is great! My son has TOF and I wish we had this during his. NICU and surgery stay. Now we keep a much smaller version for all three kids. It helps me keep them all straight! Thanks for sharing!
Wow, that is awesome. I wish I had had something like this when Sophia was having surgeries and we were doing her tissue expansions. At the time, I did scribble notes into a little notepad at the hospital (mostly her meds, questions for the doctors, etc.) BUT I did not keep it, and I really regret that – because she had some bad reactions (not allergies, just did badly on them) to some of the meds, and at the time I never thought I’d forget any of it… 4 years later I have forgotten SO much.
That is awesome. It is so hard to keep it all straight especially when you have multiple children. It isn’t like Ryan was your only one you were remembering for so that notebook was a lifesaver for you. I often wondered how you were keeping it all straight!
I actually made and kept notebooks for each of my boys from the day of their births till about 6 months of age. For my firstborn I did a year so I would have his to look back at and compare future children to.
I kept their feeding schedules, any sicknesses or medical information, all doctor visits, their urine and BM output for the first 3-4 months. This book was a great tool that really helped us when one of them did get sick or had sudden weight loss and we had to look back and track what went wrong.
our child doesn’t have any special medical problems (thank God) but we also have a notebook for keeping up with his info, growth, doctor’s visits, etc. it is a great way to keep track of everything! i am working on my dissertation and would never keep up with remembering anything without a notebook (ours is a binder) – yours is much more impressive though!!! 😀 amazing. thanks for sharing.
Why is your child taking Methadone?
We did exactly the same thing when my daughter was little! She’s older now and medically stable so we have put the notebook aside but it is a great souvenir for us of her first few years (which quite frankly are a bit of a blur) and reminds us just how lucky we really are:)
You continually amaze me, Leighann. You have taken our awesome grandson and been the best mother anyone could ever have imagined.