This is what Monday has looked like for me today:
Get up and let the night nurse go at 7:00a
Go back to sleep for a little over an hour
Wake up to the smell of poo
Breathe a sigh of relief when I realize Parker is just REALLY gassy
Sit on the couch with Alexa for a bit and watch cartoons and check Facebook.
Pat myself on the back for getting Parker up early enough to get his tube feeding started in time.
Get Alexa's breakfast ready.
Suction Parker several times throughout the morning.
Pour myself a bowl of cereal and drink a glass of juice.
Get distracted with a phone call from the Dr's office when I'm 1/2 done with my cereal. Cereal gets soggy.
Decide to take a super fast shower while Parker is getting his food and watching cartoons.
Get out of shower to the smell of poo.
Realize Parker is covered in poo.
Stop his tube feeding and attempt to change his dirty diaper.
Elicit Alexa's help in holding Parker's hands (after I cleaned them off) so he wont' "grab" while I'm cleaning him up.
Parker bathes himself, me, and the carpet in pee while I'm cleaning him up.
Change Parker's clothes, my clothes, and clean the carpet.
Do Parker's AM trach and g-button cares. Give Parker his meds.
Restart Parker's tube feeding.
Clean out Parker's dirty clothes and start a load in the washer.
Talk to my Mom on the phone while getting dressed.
Send e-mails/talk to/leave messages for the Pulmonologist's office, the HHC company, Alexa's daycare and the pediatrician.
Ask Paul to pick up some of Parker's medical records that we'll need for the trip to MAYO Clinic when he's on his lunch break.
Quickly do Alexa's hair and throw mine back because we are really late.
Leave the house and pick up my Dad so we can deliver Meals on Wheels.
Pull the car over to suction Parker.
Run into all sorts of construction on the way to pick up the Meals to be delivered.
Get really wet when delivering meals on wheels because I forgot a rain jacket for myself. I did remember one for the kids though.
Get out in the rain a couple more times to suction Parker.
Get the Meals delivered.
Get a message that the Pulmonologist ordered a new medication for Parker.
Stop at the drive through to get a chocolate chip cookie for My dad, myself, and Alexa
Drop off Dad at home
Talk to 2 different people at the HHC company about supplies needed for this month, insurance coverage, and how to coordinate supplies in Minnesota if we need something while out of state.
Play phone tag with the pediatrician's office.
Write some e-mails.
Get a text from Parker's speech teacher that she's going to stop by in 30 minutes to pick up the loaner iPad.
Make Alexa lunch.
Get Parker's afternoon tube feeding started.
Leave a message for the Urologist's office.
Talk to the pediatrician's office. Find out Parker's follow up UA was clear (YEA!!) and request scripts and orders for supplies.
Talk with the speech teacher when she stops by.
Read Alexa two books.
Suction Parker several more times throughout the afternoon.
Realize the house smells like poo again.
Parker has another blow-out.
Stop Parker's tube feeding and attempt to change his dirty diaper. Request Alexa's help again because Parker is all over the place and I can't hold him down alone.
Parker pees all over himself again (this time getting it all over his face, his trach ties and his shirt), the floor, and me.
Give Parker a bath. Which is SOOO not easy to do by yourself.
Alexa helps me get the supplies I need.
Re-do Parker's cares.
Clean up the carpet...again.
Wash out Parker's clothes and start another load of laundry.
Tell Alexa a Million Thank You's for all of her help today. She asks, "Mommy are you having a bad day."
Finally get Alexa down for a nap at 3:00.
Notice I'm getting shaky and realize I haven't eaten lunch or had anything to drink since breakfast.
Warm up leftovers.
Try to convince Parker to take a nap with no luck.
Realize this day has been crazy and decide to blog about it because someone else has to get a kick out of it.
And...it's only 4:00pm and Alexa still needs to take a bath, eat dinner and get to gymnastics class by 6:00p.
Looking over all of that I can say a couple of things with absolute certainty. 1) I hate poo! 2) I'm the luckiest mother in the world to have such an understanding and helpful 4 year old that knows her Mommy's having a bad day and will do whatever she can do make it better even when her Mommy is on the brink of losing it. 3) I spend a lot of time on the phone and corresponding by e-mail with Doctor's offices, health professionals, and teachers. 4) This is why when I go to work I feel like I'm having a vacation day. 5) I don't know if I could survive without Parker's smile. He's had a rough day too but still has a huge smile on his face even through the blowouts, getting wet in the rain, being held down by his sister, the bath that Mommy does not do as good as Daddy, and the fact that he's still not feeling too great because he's got another bug (that's not contagious this time).
So that's been by day so far. And guess what, I haven't gotten a single item on my to-do list done today yet and we leave for MAYO on Sunday. Let's hope the rest of the week isn't quite as crazy!!