Melissa & Case Hogan share with Patient Commando

In 2009, my then 2-year old son Case was diagnosed with a rare disease called Hunter Syndrome. It is a progressive and degenerative disease that attacks all of the body systems and usually leads to lifespan of only 12-15 years old.

Later that year, he was in the hospital for several procedures including tonsil removal and the placement of a port-a-cath for weekly infusions. It was after these surgeries that he ended up in the PICU because of airway problems. Those were incredibly sobering days. But, you can’t live with sadness 24-hours a day, even in the PICU.

After several days in the PICU, when it seemed as if Case was on the upswing, I collected my “30 Pieces of Hospital Wisdom.” It was that return to writing after the emotional time of his initial diagnosis that would later lead me to start a blog chronicling his journey, Here is my wisdom:

  1. Packing only one change of clothes does not actually make for a shorter hospital stay.
  2. Socks don’t really start smelling until you’ve worn them for the third day. Not the second, the third.
  3. You really can curl your hair using a compact mirror propped on top of a soap dispenser.
  4. Curling your hair while listening to your child snore is actually a peaceful activity.
  5. Listening to your child breathe can become an obsession.
  6. Coffee. Red Bull. Better coffee. Bigger Red Bull.
  7. There really is such a thing as ICU Syndrome and the medical definition is “going a little kookoo” from all the sounds, no sun, lack of REM sleep, and constant poking and prodding.
  8. The person who invented the fold-out sleeping chairs is my new hero.
  9. Heart rate, respiration rate, oxygen level, blood pressure, PVCs….
  10. Sun. I need sun.
  11. Sitting in a hospital room and eating hospital food all day will make you put on 5 pounds.
  12. You can watch Beverly Hills Chihuahua for almost four days straight and still not hate it because your child loves it.
  13. Not knowing what is going on in the world is sometimes very relaxing.
  14. Clinique mild face soap actually works really well as shampoo.
  15. If you are sleeping in a communal sleeping room, you should really turn off your cell phone. Or, at least don’t be the only one in the room who stays asleep when it rings four different times in the night.
  16. You are better off when the doctors don’t see a need to pay so much attention to your child.
  17. A child breathing a helium mix really does talk in a high voice through the oxygen mask. Kind of cute. Kind of sad.
  18. Having a job where you can telecommute from a hospital room is a huge blessing.
  19. When dried out hospital chicken wings actually look good, you know BW-3s is on the short list when you get home.
  20. Hand sanitizer.
  21. Hunter Syndrome sucks. Mostly. But it sure makes some cute and funny boys who have a high pain tolerance (great for all the constant poking).
  22. Port-a-caths rock.
  23. All those cords and wires are incompatible with the rolling around of a two-year-old.
  24. What day is it? What time is it? It’s raining?
  25. Who knew blood had gas?
  26. You really can use paper towels to dry off after a shower.
  27. Two-year-olds do not like nasal cannulas. Or oxygen masks.
  28. A Pediatric Intensive Care Unit is a hard place to spend a lot of time. But there are families who are here for months.
  29. Everyone has a story. My child does. The housekeeping staff. The nurse who cares for your child. The doctor who zips in and out. The Ronald McDonald House volunteer. The family at the next table. EVERYONE has a story and every one of them is important.
  30. AND When you have enough time and humor to write down your hospital wisdom, your child must be doing better, right?