Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, January 5, 2012

Lightning Can't Strike Twice

We finally got in to see the Neurologist today.  I was trying to dig up the videos I'd taken of Meagan's newest spasms so we could show the Neuro what they looked like.  "Lucky" for us, Meagan decided to have a spasm episode right there in the waiting room of the Neuro office.  I felt badly she was having one...but was thankful because Brian pulled out his phone and recorded it - so now we could show the Neuro what she was doing as it was actually happening to explain what we'd been seeing.

Once we got back to the room, the Neuro's CNP came in.  She examined Meagan, talked to us about her meds, and looked at her charts from her seizure logs.  Then she watched the video of what Meagan has been doing ....she didnt' like the look of it at all.  She thought the movements looked way too much like a specific type of seizures called Infantile Spasms.  It is important to treat these seizures early and quickly, so she said she wanted Meagan admitted to the hospital to hook her up to another EEG.  SHe said this would be the best thing because if it is Infantile Spasms (IS), they could start treatment right away.  She also wanted a new MRI of Meagan's brain - she has yet to have one since birth...and on that scan all you can see is fluid for the most part.  SHe wants to see if there is anything else in the brain that they missed or if they can see any other malformations or "red flags" so she will have that done tomorrow.  Meagan will have to be sedated for it, but, it's for the best to make sure they get good pictures on the first time around - better than having her move, not get the right pictures, and then put her through all that exposure all over again. 

We went straight over to Children's ... a lady named Connie called us back.  She was the nicest most genuine person. As she was checking us in, she was commenting on how Meagan's face was so cute and we got to talking about our family.  She told us she was so glad we had a big family and really loved that.  She said it was so refreshing to see a family open to what God had to offer them.  She also complimented Brian on having all girls and told him he was special for being a girls' daddy.  THANK YOU.  This is one of the first times someone has found out about our family size, the fact that they are all girls, and had TWO nice things to say about us!  It was so refreshing, and frankly, very nice to hear considering why we were here.  It really lifted our spirits.  So thank you Connie from Children's!

We continued with the check in process and went back to the ER for a temporary room.  Meagan got her blood taken here (poor thing is SUCH a hard stick, I feel awful any time she has to get bloodwork or an IV).

She was such a trooper getting her IV

We waited there for her to be taken back for her MRI... after a few hours, we heard there was no opening for an MRI so we'd instead go to her room and get her hooked up for her 24 hour EEG.  It was a bit frustrating, but, what isn't on this journey!?

We got to the room later in the afternoon ... Brian was nice to go home and get things for me to stay overnight.  He came back and the EEG tech was here getting Meagan hooked up. 

Meagan getting hooked up to her EEG

Now we are waiting for the morning.. hoping she will get unhooked early and move on to her MRI ... I'm hoping we are home by tomorrow night, but, in this game you just never know. 

My hope is that we get some sort of answers tonight so we can either jump on early treatment, or feel relieved these new movements are not spasms and can simply talk about a new medication "cocktail" with the Neuros to get Meagan back on a seizure - free path.  I'm praying that she is not having the start of infantile spasms... lightning can't strike twice in the same place, right?

 A few snapshots of Meagan's EEG... no clue what they mean.... kinda looks like Maura's scribbling

1 comment:

  1. Meagan is a beautiful little girl. She has wise eyes that seem to see all, even just from a picture. God certainly blessed you in trusting you and your family to love this little angel.
    I hope Meagan is feeling better and they have gotten the seizures/spasms under control.