When you have a child with a rare disease or a complex medical condition there are may facts you do not know. You do not know how to navigate the healthcare and insurance systems. You do not know how many specialists, therapists and pharmacists you will meet. You do not know how many times you will endure ER visits and hospital.
It’s it in those two locations that there are some little known and unexpected facts you will need to learn.
Abby is doing a gene project in science. Her teacher encouraged her to do PACS1. It’s funny to me how little Abby knows about her sister’s syndrome. She knows that she is intellectually disabled, but holds her to a little-sister standard. She knows Bridget has issues, when she was little Abby used to say Bridget had a funny pattern in her brain that made things tougher to learn. Throughout their lives, Abby has learned little known facts about having a sibling with a rare syndrome. It was a question she asked in doing her presentation that made me realize all the little facts I have learned along this journey.
Abby: Mom, how many hospital visits has Bridget had?
Me: Honestly, I have no idea. I have to think about it. Do you mean in the hospital or just in the ER? (stalling for time)
Me: (Sigh, oh crap) I have no freaking idea. I do know there have been more visits to the ER than being admitted.
Abby: I’ll go with a lot
Who does that? What kind of mother does not remember how many times her child has been hospitalized or in the ER? The answer: Any parent who child has a complex medical condition. Here are some other little known facts that only a special parent understands:
- You never go to the doctor for a temp of a mere 99 degrees. No, you save the doctor for times that really matter, like vomiting for 24 hours.
- You learn that rainbow colored poop is probably from a Fruit Loop over-indulgence and nothing to be panicked about. You learn that mustard colored poop is an immediate call to the GI doctor.
- Your child has more doctors than you knew existed and you learn the acronyms for each one. GI, ORL, PCP, Neuro, etc… You speak in shorthand and forget those “normal” parents have no clue what you just said.
- Speaking of vomit, you don’t panic at just once. I got a call from Bridget’s school nurse that Bridget had walked over to the trash can and thrown up. I asked if it was more than once. They said no. I said she is fine. They said it’s the policy that she goes home for 24 hours. She went home and spent the next day at the carousel with her grandmother. There were also devil dogs involved.
- You learn how to do anything while holding a child. I can brush my teeth, do my hair and pee all with Bridget in my arms. At almost 50 pounds, I consider it my strength training–cheaper than the gym membership.
- Speaking of peeing, when your child is in the hospital YOU are in the hospital. Usually in the hospital bed with them. A little known fact, you can in fact hold your pee for 6 hours while your child finally rests.
- While laying in that hospital bed, you actually think to yourself I have time to pee but not to poop. I wonder if this is an appropriate use of the nurse call button?
- You learn, quickly, to always have a full tank of gas, a change of clothes (for both of you) and enough cash to hit the vending machines on you at all times. Even on vacation.
- You rename the diaper bag to your “go bag”. In that go bag you have: diapers, 4 changes of clothes for the baby. A pair of yoga pants, undergarments, t-shirt and sweatshirt (because you never know what the temp is going to be) and toiletries. You also have a pack of M&Ms, cash, copies of the “File of Life”, a book, every charging cord/port you own and the hospital must-haves: snacks.
- Speaking of vacation, you scope out the closet ER and pediatric center when deciding where to go.
- You know what time to schedule a doctors appointment for that gets you around rush hour traffic and after school chaos.
- You offer to hold/watch a strangers baby in the ER waiting room so they can pee (true story).
- There is a lot of time spent in your life worrying about and thinking about when you can pee, brush your teeth and find caffeine to do all of the above.
- You acquire a village of friends that you text while holding your child and they provide a dose of sanity, humor and cross their legs in solidarity until you can pee.
- You make the housekeeping staff your new best friend. They are the ones that will get you clean scrubs to wear (that fit) when your child poops/vomits/pees all over the change of clothes you bought AND they will get you extra blankets/pillows to make that hospital bed as comfortable as possible.
For those “in the club” what are some little known facts you learned in the ER or hospital? Comment below and let me know I’m not the only one with these random facts!
For the uninitiated:
GI = Gastronenterologist (fancy name for stomach doctor)
Neuro = Neurologist
ORL = fancy name for Ear, Nose, Throat doctor
BID = twice a day
NPO = no food/drink by mouth (you can hear your child screaming in the background, right?)
ER = Emergency room (kidding, I knew you knew that)
PCP = Primary Care Physician
File of life = the file you keep where it lists all medications, allergies, procedures, diagnosis’s and important information the doctor/emergency personnel need to know why you comfort your child.
This post was inspired by a conversation held with PACS1 moms while two of them were in the hospital with their PACS1 kiddos. (Not me, this time) If we didn’t see the humor in this life, or have one another life would be so difficult. I’m very lucky to have all of you in my life!