Friday, March 16, 2012

Still Shakin'...Act 2

If you haven't already read Whole Lotta Shakin', you may want to take a moment to catch up...

After winding our way through the parking garage and corridors of the hospital, we finally reach our destination...the children's hospital entry way, complete with giant crayons standing guard. We are thirty minutes early. I didn't want to risk some sort of administrative mix-up and be turned away. The lobby is almost everything you'd expect to see in a children's hospital with colorful play areas, reflective surfaces,  a stage (for those children with dramatic flair), a library (sssshhhh!), a play truck, and of course exhausted looking parents waiting to hear their name called by anyone wearing scrubs or a hospital badge. I approach the counter and wait... Finally, someone inquires why I am here.

Admin: "May I help you?"

Me: "We have a 2 o'clock appointment for a sleep deprived EEG. It was scheduled by Dr. H at Nemours this morning. It was kind of an emergency."

Admin: "Name?"

Me: "Rae Doe"

Then I wait some more while she makes phone calls and tries to verify that we're supposed to be here. <sigh> I hate this part. I would have been drumming my fingers on their countertop if I wasn't holding Rae.

Admin (on phone): "Do you have an appointment scheduled for Rae Doe? I don't see it listed. Uh-huh Rae Doe. Dr. H at Nemours. An add-on? Oh. Ok." Looking back up at me, "Could you please have a seat? We'll call you back in a moment."

<sigh> I really wish they would define "moment" better because what she meant was 27 minutes.

Now we wait again. Don't they know I have a sleep deprived, slightly cranky, baby on my hands? Come on people...just tell me you have the information and I'll stop worrying that you're going to tell me that you can't see her today. I'm a little frazzled here since her check-up with Dr. A turned into a medical emergency and she's probably having seizures. Oh well...I guess there's nothing I can do other than just wait... Argh! Well at least we are thirty minutes early.

Tick-tock, tick-tock...It's 1:57!!!

Admin: "Doe."

Me: (Finally!) "Yes, that's me."

Admin: "I need you to sign here releasing blah, blah, blah (so wasn't paying attention). It's a $300 dollar co-pay today."

Me: "Can you bill me?" (forced smile, come on give me a break we weren't expecting this)

Admin: "No." (complete with deadpan look on her face)

Me: (since you put it so nicely...whipping out my charge card) "Oh...okay." (at least I get reward points)

That's a lot of wires!
Now that all the pleasantry is over...time for the EEG. Up the elevator we go...Ding! I check in once again and wait...the waiting never ends. If you find yourself just starting your life in Amsterdam get used to do ALOT of it. Finally, a nurse comes to get us (just me and Rae...sorry Mimi) and we wind our way through the hospital corridors. We're led into a small room with a hospital bed, reclining chair (for parents), counter area & these (see pic) lying on one side of the bed.

Now I don't do well with the unknown...who does? More than anything though I hate it when someone has a chance to describe what I'm walking into and doesn't. Since this was an emergency and I didn't really have time to research when we were home (I had to keep Rae awake...that was a full time job by itself) I had no idea what to expect. That being said, the EEG process includes wires, glue, gauze, and tape. I laid on the bed with her while the nurse placed glue and receptors all over her head, my only job was keeping her hands out of the wires and her hair...epic fail...Rae's quick! In the end this is what my baby looked like.

It's a Baby Borg with the mumps.
She looked so uncomfortable.
Towards the end of attaching all the receptors Rae started crying. I laid in the bed with her patting her tummy and softly saying, "Sssshhhh, sssshhhh, sssshhhh." (she has always found that comforting) After a few minutes the forbidden sleep was no longer denied and she drifted into her dreamworld. Sometimes I wonder if she can walk in her dreams...I know she does in mine. Does it make me a bad Mom to hope that Rae has a seizure during the test so we don't have to do this again?"

Tick, tock. Tick, tock...

The nurse came in to check on us (which woke me up...oops!) She told me that if I noticed her having a seizure that I could press a button to mark it on the film and make it easier to located when its reviewed by the doctors. Okay, so now I have a job...which means no more napping for me. Unfortunately, we didn't have to wait much longer...Rae's eyes popped open with that glazed over look and her arms, legs, and head were all shaking... Damn! I pushed the button. It's what we needed to happen, but it hurts to watch her convulse like that and feel helpless the entire time.

Just after having a seizure and waking up.
I waited to see if she would fall back asleep, but she didn't so I stepped outside our little room to get the nurse. It was over. Now it was time for the clean-up. This is gonna get messy (it didn't).

Removing the receptors.
The dots are small circles of cloth and glue.
This is gonna be fun to get out!
I was informed that we had an appointment with Nurse P at Nemours the following morning to go over the results of the EEG. To clean the glue from Rae's hair we only needed to use warm water (and maybe some shampoo). We joined Mimi in the lobby, gave Rae a bottle and stated getting everything together so we could go home. This is going to be a long night for me and my gut was already telling me what it believed to be true. Sometimes I wish it would just shut-up! This day didn't feel like it was ever going to end.

Major BAD hair day!
After the days exciting events, we were finally home. On the bright side, the glue actually lathers up like shampoo and was very easy to wash out...much to my relief. The day did end. The results would be reviewed tomorrow, I would have something else to research and another symptom to add to the puzzle. One more step closer towards a diagnosis (hopefully).

*Part 3 coming soon....


  1. So sorry you are dealing with seizures now. You're right about the glue, everyone told us it was so tough to get off but it washed away with warm water :)

  2. We're adjusting the best we can. The Keppra seems to be affecting her mood more than anything else. She also started taking naps agian...thank you Lord! Her hair looked hilarious and I just had to get a pic.