About Us

My photo
Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.


Patience is a virtue?!?!

Patience...waiting...and waiting... and waiting.
Pleasant moment singing with Daddy!
We had the EEG done at East Tennessee Children's on Thursday morning. We had never had to prepare for an EEG with sleep deprivation before. I figured it could just be because she is getting older now. Or it could be that the majority of her other times in the helmet have been the result of going to the ER. At any rate keeping Maggie sleep deprived was not fun for anyone involved. Wednesday night she got furious with me to the point of nearly gagging herself. Then in the morning, she was good for the first 1 1/2 hours. She did get to eat the first hour she was up and we just snuggled a while. Then it got ugly for a bit. Finally we woke Daddy up ( or the screaming from the monster did) so I could get ready. I threatened him with his life if he let her fall asleep, after all the effort I had already put into this endeavor. Within just a couple of minutes he walks in, with her almost asleep, "are you sure we can't just let her sleep a little bit?" Daddy didn't want to have to be the bad guy, so I took her and started bouncing, singing, dancing obnoxiously through the house. He got the picture and took back over. The dogs thought we were crazy! Next thing I know she's quieted down just kind of zoning. Her eyes were open though, so even if she was sleeping with them open, we considered her awake. After that little bit, she lay cooing on the floor with Daddy. We found every noise making toy we could!
Nana picked us up and the real adventure began. Maggie again cycled through the escalating frustration, ticked at mom/hate the world, silent zone, pleasant. Each time she cycled through these, the pleasant phase got shorter and shorter. And all the tricks were less and less effective. The ice pack and flicking the feet seemed to agitate her the most. However, I didn't see her eyes open for the majority of the 1 1/2 hour trip. Just fussing!
One seriously tired little girl!  Are we there yet?!?!
Time actually seemed to go by decently fast as I was working hard the whole time. That meant I was just as exhausted as little miss by the time we got there. When we were checking in, I saw the order from our doctor that just said "capture the episodes".  It didn't say anything about sleep deprived!  Knowing she does it every time she wakes up, I don't think we needed to do the deprivation at all. But, if they were doing it, I'm sure they wanted to be sure to get the worst, as lack of sleep and stress aggravate seizure activity. Oh well, we did what we were told. So the tech (we had him before when she was first diagnosed) got her all hooked up. By the time he got all things set, she was out! An opportune time for seizures to occur is just as they are going to sleep, so usually a study is about 30 minutes, the last 5 awake. Knowing her episodes are upon waking, we woke her a little earlier. Since the episode doesn't start until a couple of minutes after stirring, I am always hopeful she may not do it, but sure enough, they started. The tech could barely keep up documenting the clinical aspect. This was one time we were glad they showed up. An epileptic will show abnormal discharges regardless, but the goal is always to capture an episode on the EEG to provide more specific details, particularly with the different episodes.  So we finished that all up and were off to Piotr's office for therapy. I kept anticipating getting an emergency phone call telling me we had to get back to the hospital immediately, but that call never came. Nor has any other phone call...
Still so tired!
Little Miss Serious
The neurologist at East Tennessee had to review the study and then fax a copy to our neurologist at Vanderbilt. They were also sending the disk to him. Lovely that we got caught up in the weekend with it too. If I had known there would be so much delay, driving the 4 hours to Vanderbilt would have not been a problem at all.
On Friday night I also began to get paranoid that her breathing was being compromised. It's so hard. If we go to the hospital, Maggie's condition has to ability to freak everyone out very quickly and create a bunch of unneeded hype. But, by the time a breathing situation gets serious, it's usually SERIOUS! So we waited and prayed for stability.  It may just be congestion, but who knows.  Thank goodness there are a couple of nurses at church for me to bounce questions off of.
As of this afternoon when I called Vanderbilt, the nurse had said they did receive the report, but not the disk yet.  They were getting it to our doctor to look over and then he will be getting in touch with us.  I hate the fact that the nurse probably knew something, but couldn't say one way or the other, so we just wait, and wait, and wait.
Interestingly enough, when I pulled up the Bible app yesterday, this was the verse of the day glaring in my face, "But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. The Lord is not slow in keeping his promise, as some understand slowness. Instead he is patient with you, not wanting anyone to perish, but everyone to come to repentance."  2 Peter 3:8-9

Ok, ok...I guess this isn't really that long to wait.

A couple of other side notes.  When we got to the hospital on Thursday morning, I noticed this rash on Maggie's forehead.  What could it be?  I immediately started to analyze..excessive blood vessels?? why?? all the crying?? any other changes to diet?? environment?? Liver detoxing??  It even got a little worse after the study, so I took a picture of it to send to the doctor if we needed to.  I wasn't freaking out, just processing and assessing internally.  Well, as we were having our lunch, Nana pondered the scratches and wondered if they could be from my zipper or necklace.  Duh...Of course it was the necklace.  Not everything is worth over-analyzing little Momma!  It was a good reminder that every so often I get to deal with normal Mommy things too.
And, remember the whole pee ordeal.  Well, I guess something was wrong with it.  They called Shawn, so I don't really know all the details.  He said contaminated or something.  So, they sent us another kit and the pediatric urine collection bags, so tonight/morning I get to attempt this whole pee pee endeavor again.
And then we will wait...

No comments:

Post a Comment