Friday, April 30, 2010

The Big Scare

A couple of months ago I blogged about Doodlebug lagging behind in hitting his developmental milestones. Since then we have been making the rounds of the specialists to try and find out what is going on.

A month ago we saw the opthamologist. Apparently looking at the optic nerve can sometimes give indications of causes of developmental delays. When the doc examined Doodlebug I was told that his optic nerve looked good and his vision was fine too.

We also started working with Child Developmental Services (CDS) to have his speech, language, cognitive functioning, fine motor and gross motor development assessed. He was evaluated when he was 14 months old but was generally functioning at the level of a 9-12 month old child at that point. As a part of the assessment I received a written report. It contains their findings as well as notes on the findings of relevant medical professionals. One of the medical professionals that was referenced was our opthamologist.

So, I was in the kitchen reading my way through the assessment and making Doodlebug's breakfast. Perfectly ordinary Tuesday morning. And without warning it changed into one of the moments in my life I will never forget. When I got to the part from the opthamologist's and read "Dr. Blinkity-Bloop suspects anoxic brain damage."

The world pretty much fell out from under me. No one has ever suggested to us that Doodlebug's problems could be from brain damage. No one has even mentioned those words to us. In fact, most people are thinking he's just a late bloomer. Maybe need a little help to get caught back up.

After I managed to get myself back together and feed my boy, I called the opthamologist's office. I explained that I had received this report and wanted to verify the doctor did believe that he had brain damage and find out why no one had mentioned this to me. That was at 9:00 AM.

While I sat at home listening for the phone to ring I cried. Hugged my baby. Wondered what this meant for his life. Can he still go to college? Have a family? Will he struggle through school? Be teased? How will this affect our family? And then the mommy guilt set in. Is this my fault? When I was in labor and pushing his heart rate kept dropping into the 40's. Should I have done something different? I didn't want a c-section and the doctors thought I was refusing the surgery when I said that. Were my baby's brain cells dying while that was going on? Could I have prevented this?

The doctor's office didn't call back that day. I had a lot of time to think about it.

The next morning at 9:15 a nurse called me back. First she told me she didn't call me yesterday because the doctor had Doodlebug's file and just gave it back to her. Then she told me they didn't know what report I got the information from and that she couldn't give me any information anyway because the doctor's notes had not been transcribed.

As patiently as I could, I explained about the evaluation. I told her I had signed a release for the doctor to send the information to CDS because they wanted to verify his vision was okay. I had gotten the summary from CDS and it stated the opthamologist suspected anoxic brain damage and I wanted to know if that was correct.

Again she repeated that she couldn't tell me anything since the notes weren't transcribed yet but they would be done soon and sent to Doodlebug's neurologist. The notes were not done yet (a month after the appointment) because first the doctor was on vacation and then the transcriptionist. How nice for them, but you see, I really don't care. I am a little more concerned with the words brain damage right now.

When I asked how I could get a copy of these notes she seemed very surprised but said she could mail them to me. They should be in the mail by the end of next week.

And then she tried to get off the phone. Umm, no. We're not done yet.

I asked how CDS got that information if the notes were not done yet. She had no answer for me.

I thought, perhaps she doesn't understand why I am so upset about this. Maybe she thinks someone has already mentioned that he might have brain damage. So I explained that Doodlebug is developmentally delayed. We are trying to figure out why, but this is the first time we have heard the words brain damaged and we are freaking out. Could she please do anything to expedite these notes or get me any additional information under the circumstances?

She told me that "those words are in the report" (anoxic brain damage) and the the notes would be done by Monday and mailed to me. I don't know how that's expediting anything since Monday was her original day. I decided just to get off the phone with her (since I believe her name was The Unhelpful Nurse Who Blames Everyone Else).

I called my husband and asked him to call the doctor's office. If they get enough calls maybe they'll get our report done sooner just to make us stop calling.

He got a nice nurse on the phone who apologized to him (imagine that!) and told him that those words were part of a billing code, not a diagnosis.

Now I'm even more confused. Technically the first nurse didn't say that anoxic brain damage was an actual diagnosis or suspicion, but she sure didn't mention this. And if she knew that and didn't mention it I think I will change her name to Cold-hearted Mean Nurse. (Okay, okay, maybe the name I called her was a bit more colorful, but I was having a really bad day.)

This post is getting really long. Anybody need an intermission? Seriously, feel free. I'll still be here when you get back.... Ready? Okay, here we go.

I called our case manager's supervisor at CDS and explained the situation. (I wasn't going over our case manager's head, she is off getting married and not in the office right now.) She looked at the notes from the doctor's office and confirmed she had them and that matched what was on the report. She suggested I try to contact our pediatrician or our neurologist to get some more information. Maybe a doctor can get the process moving along.

Now I love our pediatrician. Love him! He is great with Doodlebug, tells me like it is and answers my mile long list of questions when we go in without making impatient noises or faces. I love him. So I called and left a message for his nurse to call me back.

Within two and a half hours he was on the phone with me. He told me that he had no idea how an opthamologist could make that diagnosis. Anoxic means that no oxygen got to the brain which resulted in cell death and brain damage. And since there is no known event where Doodlebug got no oxygen for a period of time no one could make this diagnosis on him in his opinion. Then he told me he called a neonatologist and reviewed Doodlebug's birth history with him. (See, I told you. This is why I love this man!) The neonatologist said that a heart rate dropping into the 40's a couple of times could not have caused this. If it had gone on for several hours or days, maybe. But not 2-3 pushes over 20 minutes. And Doodlebug came out breathing just fine with Apgar's of 8 and 9. He said that when the opthamologist's report comes in next week we will review it together and until then I should try not to worry about it, because there's really nothing he can see to worry about.

Whew! I feel so much better. Dr. E shoots straight with me and if I needed to worry he would tell me flat out.

And then the opthamologist office got it together and got the notes transcribed. They called my husband and read him the report. Here's the gist.

Optic nerve is fine.
Vision is within normal limits.
Follow up at age 3.

So where did the anoxic brain damage come in? A billing code. Yep, all that over a freaking billing code. Apparently that is how they will code it for insurance (as a visit to rule out anoxic brain damage).

I am so relieved I don't know what to do with myself. Doodlebug's still delayed, we have lots of work ahead of us We still don't know why he's behind, but at least no one is saying the scary phrase anoxic brain damage any more.

1 comment:

  1. Geez, I am so sorry, That is about the scariest thing I have heard of. Thank goodness you finally found it was not that but still. I would have been a raving lunatic. Hope he catches up soon with the help he is getting. Michelle


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