Now that we only have 4-day visits instead of 9-day visits, things seem to go much more quickly. There’s definitely time for some fun stuff (less now that the trips are shorter), but there are certain basics that are the same. Some friends have asked me to describe what we do on these visits, so here is my answer.
Airport, plane, airport, Kroger, hotel, clinic, hotel, hospital, hotel, airport, plane, airport, home.
Pack my sweet boy.
Pack all the stuff I forgot to pack.
Pack the things that will keep him laughing, playing, eating, and forgetting what he will be convinced, forced, and cajoled to do.
Pack food for the flight. And movies. And toys. And electronics.
Say goodbye to daddy and the big boys. Cry.
Drive an hour to the airport.
Park in extended term.
Maneuver a stroller, child, 2 suitcases, and 3 carry-ons to the shuttle station.
Convince the shuttle driver that Case’s chair really does need the ramp and no, I can’t get him out and fold it down.
Ride to the terminal.
Security process with the many TSA friends we’ve made who know Case by name and make the process much easier.
Check-in at the counter for a blue sleeve and a gate check ticket for the stroller.
Play at the play area.
Last bathroom break.
Flight – electronics, white gloves from the flight attendants, food, toys, and if the man in the seat in front of us is lucky, a nap.
Arrival, wait for stroller, and bathroom break.
Meet up with my friend or family member – yeah!
Leave Case and luggage in his or her capable hands while I get the rental car.
Catch a shuttle and stand in line. In line, in line. (When is Shire HGT getting an Avis preferred number??)
Return to terminal to pick up Case, baggage, and friend.
Check into hotel.
Groceries – Case’ favorite items of course.
Hotel – keeping Case from hurting himself while he jumps from furniture to furniture.
Clinic at the hospital.
Height, weight, blood pressure, temperature, pulse ox, bloodwork, urine collection, physical, neurological evaluation.
Questions. LOTS.OF.QUESTIONS. for Dr. Muenzer.
Planning of details for the next day’s dosing.
Hotel – keeping Case from killing me as he lands body slams and dropkicks if I try to do something other than wrestle with him.
Sleep, ah sleep.
Defensive screen maneuvers to keep Case away from food and drinks until we leave.
EMLA and Glad Press-n-Seal over the intrathecal port for numbing.
Line, long line. At the hospital to check in. Hurry up and wait is the theme of the day.
Starbucks. Children’s waiting room. Sneaking drinks of coffee next to the “No Food or Drinks” sign.
Videos. Barney, Disney, Netflix, Blue’s Clues.
Pre-op. Doctor. Nurse. Anesthetist. Paperwork. Nurse. Doctor. Doctor. Nurse. Facebook. Paperwork.
Last bathroom break.
Versed. By nose, horrible. By mouth, not so bad. But none for mommy.
Sleepytime. Mommy cuddle time.
Carry the heavy and sweet boy and the all important video player back to the procedure suite.
Set-up. White masks, gloves, EKG stickers, pulse oximeter, blood pressure cuff (can you see the boy waking up?), arranging the bed.
UNC time-out, something like “Case has two port-a-caths. His intrathecal is on his left abdomen marked with a tattoo that says ‘INTRATHECAL.’ We are giving an intrathecal dose through this port.”
Heavy boy on my lap, arm raised, port protruded, legs held, arms held, video on, stillness (almost) achieved.
Cold soap. Times three.
1-2-3, stick in the needle.
Draw cerebrospinal fluid times two. Off for labs.
Dose the medicine over 1 minute. But, calling it medicine is the understatement of the year.
Needle out. Band-aid on. Video on – still.
Recovery unit. Case’s favorite foods. Vitals. Nurses. Doctor. Videos.
Short stay unit. Case’s favorite foods. Vitals. Nurses. Doctor. Videos. Other trial families (yeah!).
Physical, neurological evaluation.
Repeat 3 weeks later.
Totally worth it.