Tuesday, January 22, 2013

Bicycle Boy and the Party Girl

Bicycle Boy and the Party Girl who steals his heart
Bicycle Boy is 16 now and is our second son.  He can make social and relational observations that others aren't aware of.  Seeking to maximize his options, he excels in drawing arts and piano while learning fiddle and expanding his interests in barefoot distance running, beekeeping, and home school high school survival skills.

Our Party Girl (a.k.a. Party Crasher) is almost two and a half years old.  She's nicknamed this because she was born about 3-4 hours after the first of several weekend guests arrived to our home.  We had a yard full and a house full, but I wasn't even here.  I saw pictures of the party online.  The ladies came to visit us in the hospital but were all gone by the time I got home Sunday afternoon.  She's a cuddler and looks the most like my baby pictures of all our children.

Bicycle Boy (BB) is so named (and so easily wooed by littlest sisters) because he spent nearly a month in the hospital after a bicycle accident.  As an eleven year old he took a handlebar end in the stomach region and crushed his pancreas against his backbone Memorial Day Weekend.  Though surgery went fine, the inflammation from the injury made eating without vomiting impossible.  He received TPN (Total Parenteral Nutrition) for the rest of his stay.

Except the time it took for his dad and I to eat one meal every day or so (as BB was comfortable with it) he was with one of us at all times.  His sister, Fuzz, was about five months old at the time of the accident and she was with me at all times for meal reasons.  The four of us were there together for the first few days & nights and I woke any time BB made a noise and to feed Fuzz.  But we had eight other children at home and only so many people who could cover the needs for us there.  Those kids needed a parent in this time, too.

So, The Man stayed in the room on the pediatric floor and there never really was any question about it from the staff.  His work situation allowed him to do his work from the internet connection with the hospital.  He worked his 40 hours a week from the room.  I came home in the evening and left before dawn to be there for doctor's rounds.

And Fuzz went everywhere with us during the day.  BB would make chatter noises back to her as she practiced all her sloppy sounds.  She napped in the bathtub in the hospital room.  When we would go for wander walks around after he had recovered from the incision, he pushed her stroller.  For that month, they were their only siblings in a face-to-face experience.  They were special to each other and have been since.

In that hospital experience, which extended to a total of essentially 40 nights before the summer was over, we learned a lot of things.

Someone stays with the hospitalized family member always.  This was especially important for us in this case because it was a child.  No matter how hard they may try to be otherwise, hospital staff members are humans and mistakes happen.  One extra person actively engaged in one-on-one care and needs is The Most Valuable asset in the room.  The Man caught errors before they happened and the staff was very thankful for having someone who cared enough to make sure things were all correct every time.

Your health care (and that of your child) is your responsibility. You don't hold the experience, training or license to administer some of the care you may need when in the hospital but the decision is yours to make.  Don't make an uninformed choice.  

If someone on your healthcare team says something or is doing something that you don't understand, ask them to explain it.  

If you don't understand still, ask them to try again.  If you still don't understand, request someone else to try with you again.  

Sound embarrassing?  Maybe it is.  Get over it.  This is your life or your child's life and - like it or not - your responsibility.  

It's not that bad.  Most every day hospital staff are faced with blank-faced people who won't lift a brain cell to think about what needs to happen.  Most every day these employees are bearing the weight of life choices that are not their burdens to bear.  I know from many experiences that hospital staff members WANT you to ask questions and WANT you to know so YOU can choose.     

Write it down.  Everything.  Names.  Dates with time.  Hair color, relative height, watch or glasses style.  Whatever it takes to make your brain remember because you will want to remember and you won't be able to.
The Man and I worked on high-stress, slim rations and interrupted sleep for weeks at a time.  If we didn't keep notes, we would have risked errors and misinformation even more.  We used a simple spiral bound notebook and kept a daily log.  Who came when and for what reason.  If someone was new to us, we made notes to help us remember that person by name, face and department.  We referred to it often and in front of those we took notes on.  They knew we wanted to make good choices and were being proactive to avoid confusion as much as we could.

We were thanked often for these three things during our stay.   They don't take much time but they endeared us to the staff at the hospital.  BB's doctors would stop in after their long hours to see how things were going for all of us.  Nursing staff appreciated our presence on the floor.  They never needed to worry about that kid in #4-213.  His nurse light never went on for a pointless concern.

And they chuckled when they found out that little sister napped in the bathtub from 1-3pm every afternoon.


  1. Did you fathom at that time that years later you'd be sharing this knowledge with another mother and that would be such a HUGE blessing? I've thanked God for notebook (and the giver) many times. The Docs even got use to pausing occasionally so that I could get it all written down. :)

  2. Such an important point about someone ALWAYS being there. Child or adult, everyone needs an advocate!

  3. When I was in the hospital for a total of a month (broken into 3 parts) I was 26 and my mom was with me 75% of the time. Couldn't agree with you any more. I've never felt so blessed that we had such great family as we had to divide and conquer as well...mom got me and Finn got Josh. You may never know how much all you did meant to BB, but I might have a slight idea, and it's A LOT!!