I am jokingly calling July 11 - 15 Nurse Appreciation Week, because our wonderful nurse is out of town for a much-deserved break with her family. While we intentionally give praise and thanks to the Lord for His kindness in blessing us with such a faithful home health care provider, I have been ever so much more aware of all of the things Ms. Yvette does on a daily basis to help Verity live her best life! Of course, as Verity's mommy, I love caring for her myself, but I will say...I don't know HOW I'd also homeschool our other kids plus do general household management if we didn't have in-home help regularly!
Here's just a quick overview of what a day with Verity might entail nowadays...
6am Water flush (we have to give her water through her g-tube to keep her hydrated)
7:00 Water flush, check diaper
7:30 Give glycerin suppository, rub belly, wait for poop; if not already prepped, make a new batch of formula and prep a new feeding bag (she gets a new one every day). On Mon, Tues, Wed, and Fri, this is the time our nurse clocks in.
7:45 Change poopy diaper; dress for the day, including putting on her AFOs (orthotics/braces for her ankles)
7:55 Put Verity in the stander so she bears weight on her legs/ankles, also making use of gravity to help get even more poo out
8:00 Administer coconut oil (helps with poo...see a theme here?!) and begin morning bolus feed. Make sure she has some toys to play with in her stander.
8:05 Brush her hair and put it up to keep it out of her face when she head bangs. Use barrettes to secure her glasses and BAHA (bone-assisted hearing aid, which is on a headband).
8:10 Apply an eye patch over her left eye. She will wear this for 2 hours to help her right eye work harder. It's tracking much better than it used to!
8:25 Stop the feeding pump--she's having issues--grab a cloth and wait for it...........yes, she's grunting...here it comes...sigh. Much of her formula is now spewed into the burp cloth and dripping onto her toys. Make sure she's finished and suction out her nose, then clean the mess.
8:40 Mess is cleaned and she seems ok, so we resume feeding. 14 more ml to go.
9:00 Breakfast is finished, food is settled. Administer probiotics along with a small water flush, then take her out of the stander and change her shirt since this one has emesis on it. Change her diaper as well...success on the poop front!
9:30 Water flush with Lactulose (helps keep her poo soft).
10:00 Water flush, remove the eye patch
10:30 Water flush, remove AFOs and check skin, give her a break before putting them back on.
11:00 Water flush. AFOs back on.
(We do therapy activities as well during those time blocks after breakfast. Depending on the day, Verity will have anywhere from 1-2.5 hours of therapy. Today, however, we had no one come for therapy, so we did our own thing!)
11:30 Lunch bolus feed! Verity has worked hard; we let her sit in her feeding chair and play with toys during lunch. (I should have given coconut oil, but I forgot...)
12:30 Water flush
1:00 Water flush
Water flushes continue every half hour...we also put AFOs on and off depending on her activities.
Various therapeutic activities...may include playing outside on the swing or trampoline; practicing moving the wheelchair; sit-to-stands and then into the gait trainer or walker; using the crawler; reading stories; etc.
3:00 Afternoon bolus feed
4:00 Water flush. Put her in bed with her hip brace on for "nap time."
4:30 Water flush.
5:00 Administer Prevacid (helps with acid reflux) and Flonase (helps her breathe through her nose better).
5:30 Water flush (On Mon, Tues, Wed, and Fri, this is the time our nurse signs out.) If Verity is napping, we leave her alone! If she's awake, we remove the hip brace.
6:00 Water flush
6:30 Dinner bolus feed--at the table with the whole family (or whoever is home).
7:15 Bath and clean up if it's a bath night (usually Tues, Thurs, Sat)
7:30ish Sit on Daddy's lap during read-aloud time (or movie if it's Friday night)
8:15ish, or whenever she is getting fussy: Change for the night, water flush to catch up on water, brush hair, brush teeth, put in bed, sing our songs
8:30 Administer prophylactic antiobiotics (helps prevent UTIs because she has renal reflux), start overnight feeding. Mix up overnight formula with vitamins.
9:00 Currently, on Sunday through Wednesday nights, we have a night nurse. HOORAY! She arrives at this time. Otherwise, we put her CPAP mask on around this time.
9:30 On Thurs and Fri nights, we welcome our friend and respite provider, Edie, at this time. HOORAY!
And of course, not on any time schedule, there are the many wet diapers to change, often along with pants because she has a super power of peeing through and/or around her diapers! We are grateful to have disposable underpads provided through our DME (durable medical equipment) company!
I'm sure I've forgotten some things...and this doesn't even touch on all the FUN things we get to do with and for our girl! These are just the "to-dos" that I try to keep track of on the days we don't have nurses. :-)
I hope you've enjoyed this little glimpse into life with our special girl!