Step 1: Wake your child several hours before she usually rises from dreamland. Realize that this starts the day on the wrong foot, because your child does NOT appreciate this gesture.
Step 2: Drop of sick child at your mother's house, because he is still too ill for school.
Step 3: Drive a half hour in morning traffic made worse by the wet, slippery roads.
Step 4: Park, grab breakfast, go to the waiting area.
Step 5: Greet the nice volunteer who comes over to do nice things with your child like coloring, reading, and building with dominoes. Feel sheepish as your child makes it clear that NOTHING IS ALLOWED ON HER CHILD-SIZED TABLE by tossing each item to the ground....even if it is in the nice volunteer's hands. Feel more sheepish as your child shreiks if someone tries to clean the floor, snatches items back from the cleaner, and throws the items back onto the floor WHERE THEY BELONG!
Step 6: Wait in the room for roughly 30 minutes for the doctor. Pull out every trick in the diaper bag. Make sure she is very bored by the time the doctors arrive.
Step 7: Greet the Fellow and the visiting doctor from Canada (woot! Go Cananda!). Sit and give detailed histories, to which they largely nod and say things like "Oh yes, we read this in her chart." which makes all of this talking seem very pointless, especially because your child is acting like a spidermonkey on crack.
Step 8: Talk some more.
Step 9: Talk. Some. More.
Step 10: Shake hands with the Fellow and Dr. Cananda as they leave to go to the big meeting. (this is the point where they leave to talk to the geneticist behind your back)
Step 11: Go back to entertaining your cracked up spidermonkey...I mean, child.
Step 12: Keep entertaining.
Step 13: Go to the toyroom. Try and discourage your
Step 14: Leave the playroom when a doctor comes to talk to the other parent.
Step 15: Let your child take her walker for a spin to buy some more time.
Step 16: Console your child when her "friend" from the playroom walks down the hallway and disappears and she dissolves into sobs.
Step 17: Wait. Wait. Wait.
Step 18: Repeat Step 17.
Step 19: Repeat Step 18.
Step 20: Repeat Step 19.
Step 21: Sit and nod as the geneticist, Fellow, and Dr. Canada tell you many, many things...of which you will not remember any of moments from now.
Step 22: Nod as they say things like "We're going to run some tests, but they only allow us to take SO much blood from a child, so we're limited." (eek!) and "After we get the labs back, then we order a SPINAL tap." (double...no triple eek!)
Step 23: Nod as the geneticist says, very excitedly, "We could have an answer for you in a year!" like it is good news. Inwardly roll your eyes and beat your head into the wall until you black out.
Step 24: Listen as he explains that they will have a big meeting with all the geneticists at the hospital later, at which they will all review your child's chart, throw out differentials, and request further testing.
Step 25: Shake hands, say "Thank you. Nice to meet you."
Step 26: Say thank you to the nurse who puts a pee bag on your darling child, who is not very pleased.
Step 27: Head down to the lab to get 8 vials of blood from your now exhausted child.
Step 28: While waiting in the lab, say hello to the phlebotomist that remembers you from the last time your child left tiny shoes print in her shins while having blood drawn. Smile as she says, "Oh! I remember you! It took three of us and two sticks to get HER blood!" before she rushes off to warn her coworkers.
Step 29: Feel thankful when you find that the pee bag runneth over...because its better than a cath.
Step 30: Feel more thankful when the nice phlebotomist has a plan of attack for getting the blood in one stick. Laugh as she says "Now if we only had the Mission Impossible theme playing, everything would be complete."
Step 31: Be ECSTATIC when it only take 1 stick!! 1 stick! Never has this happened! Dance around the room with glee!
Step 32: Tell the phlebotmist she is your hero and that you will most likely see her soon.
Step 33: Grab lunch in the cafeteria.
Step 34: Let your child nap in the car for 15 minutes, ensuring that she will not get a good nap for the entire day.
How long does it take to go through steps 1-34? 6 hours.
To sum up:
It amazes me what doctors expect little kids and their parents to do on command. I'll never forget when when G had her endoscopy ... after the procedure they brought her out to me (she was seven months old) and I calmed her down and she finally fell asleep after hours of proding and poking and other horrid things. Then they woke her up to wheel her to another part of the hospital and of course I couldn't get her back to sleep... it was a nightmare (we spent a few hours at the hospital too).
Wow, that sounds exhausting. And after all that, you have to wait a year for results? That's awful.
BLESS YOUR HEART. That sounds awful. =( Maybe you will get some well needed answers from all of this. Atleast you can find humor in it all right?!
The geneticist is always so much fun!
As for the spinal tap...is she having any procedures done under general anesthesia any time soon? The did Austin's while he was already under for an MRI. He had no clue it was even done.
Just a thought.
Ohhhhh Honey... Why was my heart beating so fast????
Spinal tap and an entire year of waiting???
But I think I would have french kissed the phlebotomist for only taking one stick....but I suppose a happy dance is just as good...
Prayers are with you...
WOW. That sounds like no fun! I really hope that they have an answer for you earlier than a year. It's the waiting that kills you, huh? And the not-knowing.
This sounds so awful. We went through a lot of similar testing with The Baby last summer, and it was horrible. I'm glad this round of testing is done, but A YEAR? Good grief.
What a very long day.
spidermonkey on crack
I must borrow that term!
As for the other things, I don't know what to say. It is horrible. And yet you are brave.
I really wish our healthcare system were in better shape.
I like the part about the tiny iron fist. I pictured it.
Okay Kyla, I peed a little while reading this. Spidermonkey on crack? SO. Funny. Thank you for showing your humorous view of this. Genetics appointments SUCK. Hurry up and wait. Hurry up and wait. Oh! We have an idea. Test. Nope. Oh! We have another idea, test, nope. SUCKY. I second Jsmith's idea on combining a sedated appointment with the spinal tap. Or request a sedated tap. And yaaaaaaay on the one stick!!!
Oh, Kyla, what can anyone say? How frustrating.
But now I know for sure that KayTar and Mme. LaBrune will get along...there are ads here for a phone company that use spider monkeys and Mme. LaBrune is giddy every time she sees one! (You make me laugh.)
Apparently the phlebotomist needs a medel and everyone else needs to walk a mile (or a year) in a parents' shoes.
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