On Thursday Reagan was scheduled for a 24-hour EEG. Rob and I had been dreading it ever since it was scheduled. So much so that we rescheduled it for a later date. But Thursday finally approached and we geared up to go. We brought the bouncer, the pak and play, her high chair, a million toys, movies, books, the laptop, the iPad, towels, sheets, a comforter, pillows…I mean, we were ready for anything.
We see what I consider to be the BEST pediatric neurologists in Orlando, but their office is straight from the 70s and doesn’t seem to have changed since built. Rob and I said if the EEG place was like their office, we’d be leaving. We got there and the room they put us in originally was SO small, and paint (probably from the 70s…can we say lead based?) was peeling off the wall. The tech said, “how’s this?” I mean, the look on our faces seemed to be conveying “are you kidding me? there’s paint peeling from the wall,” even still, it was about one step above the Dr.’s office so we said, “I guess this will have to do.” But then they made us an offer for a room down the hall that they said was the same size…it was significantly larger. We took that room, and the paint was intact.
I confirmed with the gal checking us in that the EEG techs would not be doing the lights and strobes that they did in the hospital to invoke a seizure. She said the would be and I said, “Nope, you won’t.” We had discussed this with our neurologist and per our discussion previously, he did not want to do that sort of test on Reagan. I think it’s pretty common for there to sometimes be a disconnect btw the Dr. and where you might be having a test or procedure. What Rob and I have learned is to confirm what you know is supposed to be happening AND, if it’s not right, you let them know how it’s supposed to be, or leave. Reagan is our daughter and we are giving you permission to do certain things, but not everything.
While putting the sensors on Reagan’s head, the tech asked why we didn’t want to do the lights, and I told her b/c we didn’t want Reagan to have a seizure. She said, “well that’s what you want, you want to see if she’s having seizure activity, that’s the point of the lights.” Maybe she didn’t understand that we didn’t want to put Reagan through having a seizure…I looked at her straight in her eyeballs and said, “that’s what we’re trying to avoid…we don’t want her to have a seizure,” she shrugged like that was a dumb decision, but Rob and I both know it was the right decision for Reagan and for us.
So…after 20 minutes of Reagan crying and looking at me with eyes that said, “please SAVE me!” she was hooked up and we were linked together in a 8 x 12 room for 24 hours.
Reagan actually napped for an hour and a half which was a pleasant surprise. For reading an EEG, you definitely want awake and sleep time so we were happy she gave them (but really us) a nap so early on.
But seriously, you can’t appreciate the hours of entertainment the IV pole provided until you watch this video.
Onto another topic, the food situation. The EEG place provides food for you, if you want it, which I think is incredibly nice and generous. But I did feel like were were in a teen lock in. When have you ever seen so much junk piled into one kitchen?
I know why there’s so much chocolate and carb filled stuff…you are in a square cage, willingly, and there are certain things that will allow you to survive and that’s what the kitchen was stocked with. I had chocolate wafers, an ice cream drumstick, Doritos, soda…survival was paramount and these items are part of your survival kit. Along with both Rob and I making separate trips to Publix. Fresh air is also important.
When 7:30 p.m. came and Reagan went to sleep, we were shocked…we did it. She’s asleep for the night, we made it. It was such a feeling of accomplishment. It lasted for three and a half hours. I had to sneeze…I sneezed three times, right around when it was time to feed Reagan at night, and that was it. She cried through her feeding for an hour. She was HOT, the room had to have been 78 degrees even with a box fan in there, plus she had a wrap on her head. It was uncomfortable, unfamiliar, and maybe even kinda scary for her. Around midnight, I went up to the desk and said we wanted to leave. The tech obliged…there was no discussion she simply said, “Ok…I’ll be right in to take the stuff off her head.”
Reagan was so sweaty under that cap. And she was SO happy to have it off.
Here’s what Rob and I discussed about not making it the full 24 hours. We succeeded. Sure, it’s ideal for the Dr.’s to do a 24 hour EEG. Why? Well, that’s what they say they prefer. We did our best. The EEG saw play/awake time and sleep time brain activity. At the end of the day, we are Reagan’s Mom and Dad and if we say the test is over, it’s over. We learned that in the hospital when she had two tubes up her nose, one was testing for reflux…they wanted that to be 24 hours too…but at around the 20 hour mark, she was done. It’s Ok to read your child’s cues and take action on their behalf. That’s how you advocate. It’s OK that we made it 16 hours for the EEG and not 24. She gave them 16 good hours…we didn’t need to force her to give them a miserable eight additional hours.
Not only are we learning Reagan, she’s learning about her parents. She knows that sometimes we take her to appointments and tests that she doesn’t like, but at the same time, we know her limit and will listen to her over a Dr.’s ideal scenario.
I have never seen Rob pack a car so swiftly. And when Reagan got buckled into her car seat, she gave a huge sigh of relief. She was even happier at home and elated to have a bath, even at almost 1 a.m.
She did great, we did OK. So glad it’s over…we don’t know the results of any of it, but are praying for normal brain activity. I’ve been praying lately for more talking and babbling, and God has been answering that prayer, just like he answered our prayers for Reagan’s body to begin working as intended in regard to eating, swallowing, etc. She hasn’t vomited since 8/20/14 and has been eating pureed foods and drinking water (sometimes formula) consistently. Thank you Jesus for getting us through difficult days and giving us brighter days.
September 5th, 2014 at 10:08 pm
Ann Marie, you and Rob are an amazing couple. The Lord knew who should be the ones to take care of Reagan, very few are called to such a commitment. He will see you through this, and bless you both in the present and in the future for your love and care for Reagan. She is a precious little girl, and I know she has blessed your lives even with all the challenges that her condition brings to your daily life. God bless you both! Pat and Sherry
September 6th, 2014 at 3:16 am
Great that you made it 16 hours!! My severely ADHD grandson, who needs clonepin to sleep, has had two of those 24 hour EEGs. And, he’s not allowed to take the clonepin while he has it. Which he sleeps about 2 hours, maybe. I admire his mom and you. Wishing you a good outcome.