The Samantha Years

The discharge diaries

Ah, the day of the discharge…busy, hectic, chaotic….

We needed to go home with an I.V. pump, I.V fluids, a new formula bag (I forgot my spare) and new meds. I needed to be trained on said I.V. equipment AND we needed to be out by 2:00 in order to make our mitochondrial appointment. This appointment has been on the books for five months…..oh we’re making this appointment.

This is a lot to coordinate on a Monday morning.

1:00- Seizure sign, balloons, flowers, cookies, cards, clothes and tooth brush are packed in the Malibu.

1:30- Our I.V. pump arrives but the tubing was missing. You can’t run an I.V. without it so our in-home care rep left to retrieve our missing parts. We went to our mito appt….which lasted three hours. Our home care rep came into the meeting with the pump, tubing, a manual, the 24-hour number and a ‘good luck’.

Hmmmm….so much for a little training before leaving the hospital….

5:00- We’re back up in our room collecting the last of our things to go home. I switch all of Samantha’s feeding over to our home pump and turn it on. We are ready, we are finally, finally, outta here. I wheel Samantha out while waving goodbye to our wonderful 8th floor team.

5:10- I realize that I turned the pump on but I never reset the rate of the pump. The rate is much, much slower for her new ‘j’ tube (25 mls an hour vs 250 mls an hour) I have just dumped 50 mls. of liquid into Samantha’s small intestine.

5:11- I curse

5:12- Still cursing

While I am cursing, I do turn her pump off and decide to keep it off for the next couple of hours to give her small intestine a rest. Samantha, bless her little heart, seems no worse for the wear. She gives me a big grin.

I love this child.

5:13- Still cursing

5:13 and 30 seconds: cursing a little more

5:14- Rattled by my mistake and a bit run down from a three hour appointment, I decide I can’t drive home without a coffee. While standing in line for said coffee, the 12 year-old behind me gets in my face with his sock-puppet…..

“Sock puppet stare down!” He says to me while holding this dirty sock with button eyes inches from my face. He then decides to sock-puppet stare down Samantha.

Bear in mind, I am still reeling from my 50 ml dump into Samantha’s gut. I look at sock-puppet boy and try to steer Samantha’s stroller out of sock-puppet range.

5:15- I can’t decide who I would like to sock puppet smack down more…. our cute little 12 year old or his mother who is conveniently on the phone and ignoring the whole situation; the sock puppet attack on my newly discharged, somewhat bloated daughter.

This better be a really, really good latte’.

5:21- I decide perhaps I am a bit high strung and probably shouldn’t relate to the public for a day or two.

5:51- Rush hour traffic stress ain’t got nothin’ on hospital stress. I sit happily in the traffic queue and watch my daughter in the mirror. She likes riding next to her huge get-well balloons.

6:25- Home, home, home, thank the bad-mommy-mistake-sock-puppet gods….we are home.

The Samantha Years

My Peeps- By Samantha

Mama gets so worked up about ME…especially when we’re here on the 8th floor. I keep telling her that even though we’re chillin‘ at the CH, life outside goes on and sometimes, it’s good to tell stories about other people; especially my good friends.

Here’s a little snippet about my buddy Kayla. Kayla is very used to being a T.V. star. In fact, you might recognize her from the American Furniture Warehouse Easter Seals commercials.

Because she’s a super star.

Today she is featured on 9 News; walking and talking about the gait lab at Children’s Hospital. I think it’s pretty darn cool that the technology used in movies like Avatar are helping kiddos like Kayla learn to walk. Someday I’ll be scootin‘ along at that gait lab…..once I get off the 8th floor of course.

Speaking of which, there is a rumor going around that I could be going home tomorrow! I’ll be going home on I.V. fluids and a 24 hour feed but home nonetheless.

Don’t tell Mama I told you. She gets a little paranoid and superstitious about posting a discharge that hasn’t happened yet; especially after last week! So, if you don’t hear from her until tomorrow eve it’s because she probably won’t say a thing until we step through the front door of our humble abode.

So send us a little prayer or good thought; do a get-Samantha-home dance and hey, check out my girl Kayla on 9 News, she’s pretty darn cool.