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Tuesday, September 29, 2009

Unacceptable.

Deja Vu.

Twists and Turns.

Yay! Ohhh. :( Grrr! Yipee!

This was my day. It was full of ups and downs again! Let's start with the beginning.

8AM - Another great therapy session for which I was late for! Christian always, always, almost always throws up as soon as we are about to walk out the door in the morning. It never fails. Happened again today. But when we got there he did really well again! The OT gave him "inputs" for which he responded to by moving his leg over by himself while turning from side to side. He also slightly bent his knee and flexed his foot during the rolling exercises. She said at the end of the session that she certainly didn't think he would be responding so much this quickly. Go Christian!

930AM - Received the call from the neuro's nurse. This is how it went...

"The doctor said it looks like seizures. So he wants you to increase his meds from 1mg to 1.3mg. If it doesn't go away in a week increase to 1.5mg." - nurse

"Did he say anything else about the EEG?" - Mama Bear

"No, uh, actually he didn't have time to read it. He just glanced at it." - nurse

"Well, does he know what kind of seizures they are?" - Mama Bear, confused as to why the EEG hasn't been read.

"Would you like me to ask him and call you back?" - nurse

Uh, yeah.

Unacceptable. You didn't read the EEG, but you feel comfortable increasing a dosage on a medication (Keppra) that's side effect could be to cause more seizures??? Irresponsible. I am NOT one of those parents that blindly follows orders without understanding what I'm giving my child and why. And you don't even know what kind of seizures they are? How do you know if he is being treated with the right medication? I'm not asking for much. I just want someone to go over the EEG and show me where it shows seizure activity and what could possibly set it off. It's not that Dr. G doesn't know. It's that he's too busy to read the EEG or even call me to go over it with me or answer my questions. How do I know this, because he told me he was too busy yesterday. In the words of Nanny Joe (Super Nanny), "THIS IS UNACCEPTABLE!"

I was at first devastated. Again, wind out of sale. But then I called the neuro that runs the HBOT place, they questioned the same thing - "He didn't read the EEG? He just glanced at it?" They said, "Have them burn it on a CD and send it over. We'll read it and go over it with you. If they don't give it to you, we'll do another EEG here." Acceptable.

I'm not in denial. I'm not trying to avoid hearing a diagnosis. I simply need an explanation before I pump more meds into a little brain that is still trying to heal. I need to understand. He does get paid by my insurance company, right? Then there's really no excuse for this kind of behavior. I'm so glad I have the HBOT center. And Dr. G's office will burn a CD of the EEG for me. The nurse asked, "...to get a second opinion?" Uh, yeah, that pretty much sums it up.

1000AM - Cranial Sacral/Osteopathy work with Dr. Christian Peters. Awesome name. And he's actually a Christian. He even prayed with me over [my] Christian before he started the session. He's a doctor of osteopathic medicine and he is always so calm and Christian seems to really respond to him. His behavior tends to change after his treatment (this is his 2nd visit). Christian goes back in 2 weeks and I will blog about any changes he's made after his 3rd session.

I discussed the neuro appointment with Dr. Peters. He explained that there may be answers I want and may not get and to just take what I can from neuro, build my team of trusted medical professionals, and move along. On my way out I picked up a little blue slip of paper with a bible verse on it that was on the secretary's desk and put it in my purse.

I felt defeated by the neuro call, I admit. I felt a little lost and like I couldn't find God at that moment. I pulled out the blue slip of paper from my purse and read:

Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand. Isaiah 41:10

God has a funny way of surfacing when you need Him most. This was just what I needed and at the perfect time.

3:30PM - A letter comes. It's from our insurance company....and it's a reimbursement check for the hyperbaric treatments we did in Phoenix that we paid for from donations (THANK YOU!) and out of pocket. And this reimbursement check is enough to bring us to the $5000 we need to start more HBOT treatments. It is almost unheard of (although, this is changing) for an insurance company to pay for HBOT. This is a true miracle. And in just two weeks, we have been able to secure funding. Now we can do one hard session a day and one session a day at home, giving him two sessions a day, which is ideal. I don't know if they'll reimburse again, but this is exactly what we needed and when we needed it.

God. Is. Good.

8 comments:

mteisan said...

Great news!!!

gavman306 said...

So many have said it before, but I have to say it again, Christian is so lucky to have you for a mom, somehow he picked YOU! Good for you for doing what a good mom does, question, and not be satisfied. Christian will continue to get better because you are his mom. Great news about the HBOT treatments, he will soar now!
God Bless!!

Rochelle said...

Wonderful news about the reimbursement check! That is awesome!!!

I wanted to let you know that I made the decision to donate all of the sales from lapel pins on my website to Christian from this week until the end of October. I don't know that it will be alot because overall sales have been down this year. However, every little bit will help and its one way I know that I can contribute to help Christian. I am going to post something on the website (if that's okay with you) about Christian's story so that my customers can know that their orders will be going to help Christian with his recovery. For anyone that is reading your blog and interested in ordering (and helping Christian), they can do so at http://www.celebrateadoption.com

I hope that the Neuro at the HBOT place is able to read and explain the EEG to you in better terms. You're right about the unacceptable behavior. I realize Dr. G may be a buy person but he should take the time to read the report, explain it to you so that you understand it and make certain that Christian's meds are appropriately dosed. I hope you get the answers you need from the other Neuro.

Dr. Peters sounds like a keeper! The verse is a great reminder for all of us.

Have a good rest of the week.

Alicia said...

First, let me say a big HOORAY for the progress Christian is making in therapy. Great job little guy!! And another big HOORAY for the reimbursement check!

I am appalled at that so-called "doctor". That is totally irresponsible and unacceptable. Meds should not be taken so lightly, especially since he doesn't "have time" to do things properly before increasing dosages. With that attitude, it's only a matter of time before that "doctor" gets sued for malpractice. Maybe he already has!

Mama Bear, you are doing a WONDERFUL job advocating for your son. You are doing all the right things. When something seems unacceptable to you, go further with it until you get satisfaction. No matter how much a doctor, nurse or therapist says they care about Christian, they will never care for him like you. You know him like no one else.

I give you a great big cyber hug and pat on the back.

Brooke said...

YAY for the insurance money Shauna!! That's awesome!!!

And for what it's worth...GOOD FOR YOU for not blindly following the doctor and what he says. STAY informed....keep pushing for what is the BEST for Christian!! You are doing a FANTASTIC job girl!!! I mean.....look at his progress.....he is a FIGHTER and it has been your love, support and mindful eye that has kept him on the best path to recovery!!! You and your family are such good support for each other and I think that's great!!!

Keep doing what you're doing and trusting in God. Just when you are feeling lost HE definitely finds ways to let you know he's still there, guiding you and helping you through!!

Think about you guys constantly!! Hope you're taking care of yourself and that sweet baby girl too!!! Hope Gabe is doing well in school and that Manny is doing well also!!! :-)

Jendioguardi said...

Wow!I am really (not) surprised at the face that the Dr. did not "read" the EEG, but rather glanced over it. I agree, that is not acceptable. And, I'm glad that you're demanding more. That's what a good mama bear does!!!

Congrats on the reimbursement check from HBOT. I'm so glad that you've met your goal to start HBOT in the hard chamber. Just want the lil' Superman needs! Thank you God!!

Thinking about you always! HUGS!

Cassie said...

I am rally happy the insurance reimbursed you guys. Sorry the neuro didn't bother to read the EEG, that was burn me up

hungeryjack said...

Nice post - Christian Peters ..Keep Posting


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