First, we have to thank ALL of you. Sometimes I feel like we ask so much of you all. For prayers, thoughts and support. And every single time you are all there to hold us up. My friend Kristi always describes the support they receive while on their journey with their daughter as their village. I can truly say you are all our village. Today has been an extremely emotional day due to multiple things. We are happy to say though that our Little Miss has once again amazed us and is doing well.
This morning Riley's heart rate was all over the place. I think for 2 hours straight she kept the monitor beeping every few minutes. She was sleepy so a lower heart rate isn't unusual but, this was the type of sleepy that comes in the middle of the night. Even when I tried to annoy her, for lack of a better description, she still stayed in the low wonky heart rate range. Kept this mama on my toes and of course had me fearing the worst. Just a natural reaction I suppose.
We had the sweetest nurse the last 2 days, quite the cheerleader for Riley in fact. Even she was worried. The attending pediatrician came in while Riley was messing with the monitors and had the "room" (techs monitoring the continuous EEG) check to see if there was any correlation with Riley's weird HR and her EEG. Nada. So, she ordered an EKG. All along we have been so happy that all of Riley's major organs function fine so the worry that overcame me when I thought of the what if's was huge. Deep down though I really thought it was probably just because of all of the medication in Riley's system. Like I said last night she is sleepy!!!
EKG was normal. Labs. Well labs showed her Depakote level at 62. Yeah 62. We were not expecting that. Last night they were at 136. They are aiming for a level between 100 and 125. So we have a ways to go....
Riley's seizure activity has calmed down. The only thing showing on the EEG is a very small electric seizure that is not having an effect on her outside her brain. Sort of like electric charges here and there. I asked if these would have any long term effect on Riley and the general answer is no. Riley has brain damage. She has areas that will have this type of activity because of what she's gone through so... I suppose this is the best case scenario??? I mean they've figured out how to control the infantile spasms (IS/ACTH) and now the tonic/clonic seizures (Depakote) so I suppose we should be happy????
My biggest gripe with these meds is the state Riley is in right now. Tired, sleepy, lethargic. And I told the neurologists point blank that I really hope this isn't how she will be moving forward. I've been promised she will get used to the meds. And they have been super loading her to get her levels up so it is to be expected. I can't stress enough that for Riley to progress she can't be this way. And for Riley to live in life she can't be this way. I believe I used the term "quality of life" and "future" multiple times today.
I still know deep down that most of these doctors don't see much potential in Riley. I mean if I tell them she's smiled, rolled, held her head up etc. they still look at me like.........crickets. I really should have busted out the video today. Too many other things on my mind though! And I'm ok with this. She's already amazed them so I have faith she'll continue to do so. It's just what she does :)
This is where the nurses are little angels. They see these cases so much and have been able to tell us what happens after seizures are controlled. And, they see progress. Even the attending neuro I spoke to today agreed that a bit of regression therapy wise was expected but, Riley should pick right back up where she left off. So maybe, just maybe, I should give her a bit of credit for being semi positive.... Most doctors with "neuro" in their title just aren't positive. That's just the reality of what we've dealt with.
So, because the EKG was good and because we are just waiting now for the med level to get to where it needs to be Riley, got to get the head wrap off. Problem is that thing is HARD to get off!
I worked with the tech first to get the electrodes off (took some tangle spray and waterless shampoo) and then let Riley's hair soak in the detangler.
Once that set in for a bit we gave Riley a bed bath and I worked on each electrode spot one by one to get the gunk out.
For the most part Riley's hair is gunk free but, it will probably be a bit before it is all completely out.
Riley's looking better and her swelling is subsiding. Now we pray, hope and cross all of our crossables that tomorrow is homecoming day!
Thanks again for your support! And remember to hug those you love and tell them you love them tonight. We've been reminded how precious life is today and we're thankful we still have Riley here to fight for. It's something we will never give up on.... Ever.
Dave, Megan, Logan, Mason and Courageous Riley!!!