You Know...

You know you are a parent of a special/medical needs child when...

A few days ago on a group I participate with someone started this post to get the parents talking in a more fun way about our kids. While most of these are the thoughts of other parents I have tried to reword some but also tried to keep their general thought in the main post. I am posting the main ones as there were a lot of very good ones that were posted.

• Your friends and their children are out at a restaurant at 9pm, and your child has been sleeping for 45 minutes, has had his or her meds, nebulizer treatments, is hooked up to the feeding pump, sleep apnea machine, and/or other needed machines, and your house is quiet except the gentle humming/beeping of the medical equipment running in the background. You sit there hoping tonight there will be no alarms.
• You can argue with your child’s doctor over the phone and have co-workers (or friends) ask if the doctor needs you to translate their own “doctor-speak” for them at the next appointment. Then you find you need to explain your child’s condition or diagnosis and to a new medical student what the “doctor-speak” language really means.
• You realize your freak-out mode is set to high, when your friends go ballistic over a broken arm, yet your thought process is: an arm is just an arm and I can handle a cast or no arm if needed. Besides broken bones heal really fast. However, dropping O2 sats, respiratory rates to high or too low, heart rates to high or too low, seizures, intensity or duration… these can all be true emergencies.
• Your luggage lets lost on your way home (along with others) and you calmly notice the ONE bag that came in is the medical supply bag (huge sigh of relief). Everyone else is frantic; you however know that eventually the rest will catch up with you.
• When your normal is complex in the doctors eyes, or when the pediatrician comments that your reality of parent –vs- doctor skills are blurred and you are far too comfortable at home. When you as the parent are too comfortable caring for your child, when others would have freaked and taken their child to the ER or had them admitted days ago.
• When your purse/bag contains a mini first aid kit to include: extra g-tube supplies, tape, KY-jelly, a thermometer, saline bullets, extra Zofran, extra tape, duoderm, tagaderm, syringes, extensions, etc... and the questions and looks  that follow… and your car first aid kit rivals that of any EMT first aid kit.
• Your child understands eating as feeds or boluses, AFOs as shoes, and feeding pumps and other medical devices are given human names and qualities, and feeding tube back packs and g-tubes all have nick-names. Your child has multiple medical device back packs to match his or her favorite outfits, holiday seasons, or sports teams.
• The ER and clinic staff recognizes you and comment about giving you your own parking space or  when you know the clinic or hospital staff well enough to know what they do in their free time outside of work.
• Your children know normal glucose levels. How to change feeding tube buttons, mix formula and set the feeding pump, or help trouble shoot error messages on a pump, and hook up and secure extensions.
• You know and can run NICU/PICU/ICU equipment in your child’s room and the NICU/PICU/ICU staff is comfortable letting you run the equipment. You are in the ER with your child and can recognize and know how to use or work nearly everything in the trauma room or you hear equipment alarming in another room and the urge to check because the medical staff is not checking fast enough.
• You have been encouraged to go to medical school, because you clearly know as much if not more than most of the residents under your child’s supervising doctor’s care. The notebook you carry is more comprehensive than most medical books any medical student, resident, or doctor could turn to for answers on your child’s condition or diagnosis. You can rattle off your child’s medical diagnosis, medication, strength, and dose list without looking.
• You have closets or cupboards filled with medications, formulas, supplies, machines, spare parts, not coats, linens, sports equipment, or cleaning supplies.
• Your child knows the hospital layout and can direct others to where they need to go, or you find yourself giving directions better than the hospital staff because you know the shortcuts.
• Your “normal” child thinks something is wrong with all of her baby dolls because they are missing feeding tubes, nasal cannulas, other medical devices, and insists the dolls be fixed and helps to “doctor” and make them right.
• Your family uses syringes as water guns, for splatter painting, to tie die shirts, and other craft projects. Your family uses q-tips, gloves, gauze, and other extra supplies for a variety of craft projects.