Kintropy In Action

After the week of helping out at Gabriel's school, gutter patrol, regular chores, and double duty with the kids, I thought, hey, I'm going to take it easy today. I'll work on my book. I woke this morning at 4 to the congestion snores of my son as he pushed me closer and closer to the edge of the bed. I lay there twenty minutes, when I realized sleep was not going to revisit. So, I went to our office and did some reading of blogs. After I finished Terrible Palsy's recent blog about the many people who have a hand in the raising of her son. Hannah's night nurse, J, walked into the office and sat down.

She has been with Hannah since The Beginning, and she is a trusted confidant. "Can't sleep huh? I can hear him through the walls"

I let go of the keyboard. I was in the middle of an email. I look at her. I smirk "Nope, I tried."

She gestures with her right hand on the desk. "You need to take Hannah into the dermatologist today." I argue with her and read the blog and my comments to her. Hannah's feeding pump goes off she leaves the room.

I sigh internally. Together, we decide she needs to see her pediatrician. The specialist is usually 3 to 4 weeks out. There went my relaxing day.

So this morning, I got Gabriel ready and off to the bus by 7:20. Then I finished up Hannah's morning meds. I called the pediatricians and got us a 11:50 appointment. At about 9:00, I noticed Hannah's med port off her g-tube is open and has been spilling all over the floor and her back. Yummy, nothing like sticky, partially-digested, vanilla pedisure all over oneself to start the day with.

Hannah had complaints. I got Hannah to the bathroom and on the child's potty while I cleaned the floor and started a bath going. After every bath, her trach ties need to be changed and the skin around the g-tube and trach tube need to be cleaned and dried. At least Big Big World was on to distract her. After I finished that, I took her to the family room where she began to act like she was going to sleep. I started looking at our to-go bags. Lots of stuff to check to make sure we have. I started to load the car. Hannah's breath sounds were audible across the room; she needed suctioning. At this point, she figured out that she was going out. I took her back to her room for a suction as she complained and screamed "Out, out, out!"

"We are going out, Hannah. I just need to suction you first."

While we at the office, I had to call Hannah's physical therapist and cancel for the day. We made it to the office and back with about an hour to spare before we needed to pick up Gabriel at the bus stop. I then proceeded to pick up the house, go crazy cleaning in the kitchen, and then make dinner. When that was all finished, the only pharmacy in our area that does compounding called at 5:00 PM (It's a Friday) to tell me that they can't refill a important med (one that should not be skipped) for Hannah till she has appointment with the prescribing doc. This particular med needs to be called two days in advance because of the nature of their work flow with compounds. So, a) Doctors offices are closed by 5 on Friday's and b) we only have enough for the weekend. (We called this prescription in a day ago)

I think there are creatures called Chore Faeries. When they think a person has a thought of taking the day off, they go into action making sure that is not a realistic goal.

--Mom

P.s. Disclaimer:  My kids are wonderful. I feel lucky I can get Hannah into the doctor the same day. Many on call doctors in specialist office are generous with their time.