It’s that time again! The Children’s Hospital Ride usually fills up by the end of May. Come join us!
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.
We love you all and are so touched you continue to be on this journey with us. There was not a time where we felt alone or lonely.
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.