September 16th, 2013
We kept Aiden home from school due to him having two Dr.'s appts. Around 10:30 I get a phone call from Dr. Haseebs office. This is his Neurologist. The lady tells me that Dr Haseeb has reviewed Aidens labs that we got drawn on Friday and that his Liver Enzymes are elevated. She was calling to give me a " Heads up " that the Dr. will probably want to get more labs done in about 2 months. Oh boy.... you all know how hard a task this is. He actually did it very good on Friday though.....Thank GOD! We have an Amazing Lab girl, who we always get a Frosty for her and Aiden after the labs are drawn, that's what ya do when you find someone this Awesome, and Aiden is a Trooper for sure, so he deserves a treat:-) Anywho, back to my point. I have absolutely no clue what this means when she says they are elevated. One would think that I would ask her, but I need someone to explain it to me that will actually care that in MY brain...I am FREAKING out!! My Aunt explained that this means his liver is not doing what it should be, that it is not filtering his blood the way it should be. I kept myself calm..one because Aiden was sitting right there and two...I just had to for a second until I hung up the phone. I broke down..all that was going through my head was.. " his liver is not working the way it should ", Aiden had fallen asleep before I broke down, but I still went into my room, I just needed to. I called Robbie because I knew he could calm me, he is Awesome like that. I probably freaked him before he calmed me though, it's always fun when someone calls you sobbing and you are trying to understand them. We decided that I should call our Awesome Lab girl " Dina ". She is one of those women who as soon as you hear her voice you will cry and trust me when I say...I cried. This is a huge compliment, because right off the bat she calms you. It's her sweetness that makes you cry, because I am talking to someone that to me actually cares. She explained about how his levels are slightly high, but not to worry because he isn't wanting to get them re-drawn the very next day. She told me to make sure I ask the Dr. just what this means, which I had planned on doing since the lady who called me gave me nothing else to work on.
I guess I should also tell you about his first appt. with the ENT Dr. and then move on to the rest of the day. Back in 2011 when he had his first siezure and got an MRI done, they ended up finding something called Cholesterin something...sorry, totally forgot the exact name of it. Basically it's some fluid like stuff behind his left ear on the inside that we just found out may be left over buildup from an infection from years ago. We don't ever recall him having any infection. but ok we will go with it. Our next thing to do is scheduling an MRI with contrast. We explained to the Dr. that he would HAVE to be put to sleep due to his other medical issues. Him being put to sleep scares us, but it's really our only option. If the MRI comes back that this has not grown then it's as simple as we are done, if it has grown then that means surgery :-( They will then go in and remove it.
Back to the Neurologist appt.
The nurse that we had was not happy that the lady who called me FREAKED me out and she said she was very sorry that it was handled like that. Dr. Haseeb came in and explained that his liver levels have always been slightly elevated, which we knew, but now he is getting concerned. He has taken Aiden off CoQ10, which he has been on to keep his heart strong due his Muscular Dystrophy. Don't Freak, we are simply getting a head start, as of right now his heart is fine, just taking some precautions. he is concerned that maybe the CoQ10 is keeping it elevated. We will be getting labs drawn again in 6 weeks. IF they have not changed, then we will make an appt. to come in and discuss changing his Trileptal to Keppra and having him go to a G.I. Dr. We are praying that we don't have to change his meds because that means we will have to ween him off them first. That in itself scares the S*** out of us. So I do something I probably shouldn't have. I googled Keppra.........THAT scared the S*** out of me and Robbie when I read it to him. Go ahead and Google Keppra and then Google Trileptal so you can see what I am talking about. BIG difference in side affects. We can handle Trileptal ones. I mentioned to the Dr. that it makes me very nervous to A: ween him off and B: to switch
He looked at us and said....I would rather him have a seizure, that we can handle, but we can NOT keep him on something that could ruin his liver...point made, Thank you!
This may not seem scary to you, but when it comes to your kids who mean the MOST to you and Dr.'s are talking about organs failing and then you look up meds and their side affects....WOW! it's a lot to take in.
Sorry if I scared anybody, but this Blog is my way of keeping info fresh in my brain, but believe it or not.....It's CRAZY just how much info and detail I keep front and center. It's not just about my kids, it's all the info with and for regarding my Mama too.
Thank you, Thank you for all of your love and prayers