So if you've watched the video I've posted of Lucas doing the CET, you see why I'm so worried. It looks a lot like seizure activity and I just want to make sure everything is ok and see if there's anything else we can do for him.
Ok, so yesterday evening Dr. Africk finally called me back. And this is basically how the conversation goes:
Dr. Africk: "So first of all Lindsey, if you wanted to schedule an EEG at any time, you could've just asked and I would've been happy to do it."
Me: "Oh, ok. Thanks!"
Dr. Africk: "So at Ochsner we don't do sleep studies with an EEG for patients under 2 years old. So I'm recommending you go to Tulane to get it done. Don't worry they have a great accredited department and he'll be fine there." Then she proceeds to give me the doctors information....
Me: "While I have you on the phone, I was wondering if you have an email address so I can send you a copy of the video of Lucas doing the seizure-type activity and I wanted to send it to you in the meantime for you to look at."
Dr. Africk: "Well, I don't use email. I don't really want to get into that; and besides, with so many patients it's hard to keep track of everything. Just call Dr. Nicholl and he'll follow up with you from here out."
Well I'm taking this as she's dumping us because we went through another doctor to schedule the sleep study. Because what other reason would she have for the attitude and letting us go? I used to love this woman. She has been with us since Lucas was a month old and has always been worried about me as well as Lucas. She gave me hugs everytime we went for an appointment and always bragged about how well he was doing. And the worst part of all of this is that I never even asked the other doctor for the EEG. She was the one who recommended it and offered to call the doctor on my behalf because it was easier for her to get in touch with the doctor than it is for me.
I can not tell you how upset I was after I hung up the phone. I never in a million years expected that response from that doctor. I cried for an hour. I mean, how can she just dump us like that? I wanted to yell and holler every cuss word in the book--even the ones that you NEVER say in front of others, especially not your mom. And when they do slip out, you apologize for like twenty minutes because you're so embarrassed. Well it's a good thing we stayed in last night, because I had just had enough of everything. I was sad and pissed off and didn't want to be bothered. I was just ready for the day to be over, and I try to never wish a day to be over because you never know how many you have left, so why waste even a minute of one day!
Well enough of that bs! ;) I tried calling the doctor yesterday to get in ASAP and he's on vacation!! Go figure, just my luck! So I called his nurse three times before she finally answered. You see the thing is, if these are seizures, they're now occurring daily. And so far, by God's grace, they don't seem to be affecting him neurologically, but with seizures you can never tell! He could be damaging his brain more and more every day and we don't know what to do to help him until we get these tests done. Well finally I stress the importance of seeing the doctor (like now!) but there's paperwork that needs to be sent over before he'll see us. And we also have to wait for a bed to free up to get the study done. FRUSTRATING. So of course I had to call the old doc today to get the paperwork sent over, and guess what? They didn't answer. Tell me you're surprised...
I barely slept last night and I've had this headache since I got off the phone yesterday. Thank God my little man smiles at me everyday because he's what helps me get through these times. I just hate to see him hurting.
And on another note, I think his little foot is bothering him now. I tried putting on shoes yesterday and he screamed. I thought he just didn't want to exercise, but when I put it on again today, he was crying with tears. I couldn't buckle it up tight either, and he wouldn't put much pressure on it. BUT, even with that, he did much better in therapy today than he did yesterday. What can I say? You win some, you lose some! I guess it's just gonna take time to get back to normal.
So please, please pray for my little man. Please let these not be seizures, and if they are, let them not be damaging his brain while we're waiting to get him tested.
Every day is something new with us, maybe I'll write a book one day....
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