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Not so good news for me...


Forum: Children with Special Needs

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  #1  
October 27th, 2009, 02:18 PM
Daisyfields's Avatar Platinum Super Mega Mommy
Join Date: Apr 2007
Location: In the enchanted forest
Posts: 5,257
For over a month now I've had "drainage" coming from my left ear, not blood, I'll leave it at that. Today I saw a doc at Children's Hospital & after a quick eval & info taken, the doc ordered me to have a CT scan. I got that done, then a hearing test & went back to the doc's office to have a "talk"... He came in w/ his associates & sat down next to me & the PC & was pulling up my CT scan to show me "something" & said "you're complicated"....

He continues to talk lots of medical terms, "mastoiditis"..."rare bone disease surrounding the structures of my brain"..."mastoiditis connects to infecting the surrounding structures"...."facial-nerve palsy"...."complications resulting in meningitis"...."rare in the United States, the percentage rate is low, around 0.004%"..."spinal abcess"..."rare disorder caused by bone infection in the area between the bones of the skull or spine"...

Then he starts to talk about my outlook, or the prognosis, possible complications & how the infection that has been spread to the bones could potentially cause brain damage, and since I already have sensory changes & he's thinking of paralysis.

He talked to me about my symptoms, and when he started to talk about certain ones, my jaw about hit the floor. Bladder incontinence, difficulty urinating, back pain, headache, lethargy. All symptoms I've been experiencing.

As he talked, and I tried to listen, some of it sunk in & some just blew over my head. I could see his mouth move, I could hear voices, but nothing was clear anymore.

Then when I heard him clearly, was when he said "surgery, shaving of my hair/head, cutting into my skull, approximately 4 inches or so"... and then the "six weeks before being able to feel normal & being able to drive"... He looked at me & said "Chantelle?" "yes?"...."so I'll have my assistant call you & schedule the surgery then, we'll see you in a couple of weeks"... he walked out of the office, I sat there in the chair, the assistant walked over to me, you could see her looking at me in the eyes, she looked like she wanted to hug me, she could tell I wasn't doing alright...she said "so I'll see you soon then? take care, we'll be in touch"... she walked out.

I got up, walked out of the office (w/ my cane) & after gathering myself in the entrance on the 1st floor, I called my husband, I didn't know what I said, I didn't understand much of it, I just rambled a few things, heard him say a couple of things & then he said "I love you"... we hung up.

I got in my car, drove to the 99 restaurant & ordered a glass of Kendall Jackson w/ a salad. I sat there, didn't say much, called my BFF (who I met on JM actually) & just cried. I was at the bar, crying, on my cell phone. She is the best friend I could ever ask for. She wants to come to help me & she lives states away. I loved talking to her at that moment, she didn't ask me "when" I would be back to normal or "how this would effect our income"... she just listened. I knew I could count on her, she didn't try to brush me off, she didn't ask anything of me, she just listened.

As I drove home, I had the music on full blast, didn't cry, just drove, I don't remember the drive, but I felt like I wanted to wake up, like this was a bad dream. What do I have again? Why? How did I get this? How will this effect my kids? Then my husband called me & at one point, I just cried. I said "Christmas is ruined again Mark"...

Every Christmas for the past 3 years has been a nightmare. The first Christmas that we moved into our first home that we bought, his mother got really sick (MIL), she almost died, we spent Xmas in the ICU at UMASS Boston, hoping she wouldn't die, thankfully, she did not, today, she is still not 100%, never will be, but she is alive.
The following year, I had my now almost 2 year old on the 12th of December, I had P.P.D., that Christmas was miserable for me, I hated everything that day. Last year, Massachusetts was hit w/ an ice storm that left us w/ out power or heat for weeks, we were lucky we didn't die, we have a wood burning stove, thank God. This year, I'll be w/ a partially shaved head, unable to drive or do much, recovering. Once again, I have ruined our Christmas, not just once w/ PPD, but now w/ this surgery that I can't put off.

I realize that when life give's you lemons, you need to make lemonade.... I realize that God doesn't give you things you can't handle. At least, this is what I am told to believe. Then why is it that I feel like running away? Why is it that I want to say "no, you have the wrong person, that CT scan MUST be wrong!" ...
too bad I saw, w/ my own eyes, the scan, I saw the mass that was there, I saw the bones that weren't right, I saw the fluid leaking from the abscess.


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  #2  
October 27th, 2009, 09:33 PM
~~~Sara~~~'s Avatar Platinum Supermommy
Join Date: Apr 2007
Location: So. California
Posts: 5,770
I am so sorry. I hope you have family you can draw near to help you with the kids and get you through this.
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  #3  
October 28th, 2009, 10:18 AM
Mega Super Mommy
Join Date: Jun 2008
Posts: 3,961
I'm sorry you have to go through this. Hopefully you can get more answers as time goes on.
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