Tuesday, January 12, 2010

up, uP, UP, DOWN, Down, down.

Yesterday was supposed to be Viewer Mail day. Viewer Mail will be tomorrow instead (hopefully). I should know better than to make a plan. The Regina General Hospital called me yesterday morning, in response to my message requesting to see the CT images. They said that they could burn me a copy of the disk and I could pick it up at any time or they would mail it out. I couldn't wait for the mail. I planned to pick it up immediately - just as soon as Samsam woke up for the day. He was sleeping in, since he had been up most of the night.
Samuel has been working on cutting his 4th tooth since New Year's. The boy is suffering. He is drooly and miserable - doesn't know what he wants. That tooth needs to come out for him and for Mommy and Daddy.
As soon as he woke, I bundled up the kiddos and went to the RGH. Finding parking was a nightmare, and then we walked (for what seemed a long time) in the cold - holding Kattie's hand and carrying the bucket that Sam really shouldn't be in anymore. We made our way to the X ray reception, that is where they had my disk. Finally, I would have a solid conclusion!
We made it home an hour later from when we left the house. I was so anxious and the kids were being so good. As soon as I had their coats off, I popped the dvd in the drive and sat down. It took me a minute to figure out the program they use for the scan. There are 216 images. The first image shows the report. "No intracranial abnormalities" - that's great. "Note the fusion in the metopic suture resulting with trigonocephaly" - hmmmm, interesting and very assertive wording. Then I flipped through many images that didn't show me anything. All of the pictures on the disk were of his brain. It looked fantastic - perfectly healthy, but it didn't prove to me anything about fusion or trigonocephaly. I looked everywhere and couldn't find those 3D images that I wanted. It said in the report that 3D reconstruction was done - but where was it?!

I called Radiology again. I knew I was pushing my luck. Thankfully the woman on the other end was very nice, she said she would do the same if it were her child. She said she didn't know why the images weren't included on the disk but she found some "beautiful" hard copies that I could have. I was ecstatic! I called Mike and asked him to pick them up on his way home from work, since Sam was now down for his nap.

In the meantime, the Cranial Facial nurse called me from Calgary. She apologized that she missed us on Thursday and was looking forward to meeting me. She said that she wanted to give us a great big hug for all we had been through, and was thrilled with our news that he was fine without surgery! She then said, "I'm so happy that it worked out this way, X-rays can be so inconclusive!" X-rays?!? I told her we didn't have an X-ray. She said that she thought the report was written based on an X-ray. I told her no...it was a CT. She paused and said, "oh - those usually aren't wrong."

The craniocoaster is picking up speed again and I was anxious to see those 3D images. As soon as Mike walked in the door, I grabbed them from him. They are big. They look like the big X-ray sheets (ironically) that you see on tv in a doctor show. They are beautiful, she was right. He is the sweetest little skeleton I have ever seen. And he has cranio.
You can see how clear his open sutures are, and then in front (the metopic) it is clearly fused. You can see how prominent his ridge is in the left picture. And also, this is hard on Mommy's heart, but in the right picture it does appear that there is mild trigonocephaly. Regina's not so stupid afterall. I can very much understand why they wrote what they did in the report.

6 comments:

  1. Kristen, I'm sorry you're going through this after getting such hopeful news in Calgary. This must be devestating for you. I hope that there is some peace in knowing for sure what he has, rather than being given false hope in Calgary only to find out later on that there are problems. I pray that whatever treatment he needs will be quick and successful so that you guys can move on from this and get off the "craniocoaster" once and for all!
    And I hope Sam pushes that little tooth out so you can all feel better!! Teething sucks.

    (((HUGS)))

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  2. I really don't know what to say....I just hope for the best. Poor little man, I hope whatever is going on it will be resolved soon so you can get some peace and closure.

    Just know, we are here for you anytime you need.

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  3. Thanks Kathy and Bibi. I'm not sure what has to happen. Calgary was so confident that he is healthy with a ridge. But things have changed again. I have to focus on what they said about having a good head shape. They generally only like to do surgery when the head is misshapen, which thankfully Sam's is not. I guess we will see what Dr. Buwembo says. It's good to know what is there though.

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  4. * I should also note that although it is early, the metopic suture CAN close as early as 6 months - the presence of Trigon is more of a problem - if that is what is shown in Sam's CT.
    Also - the ridges don't really make any difference.

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  5. If you look closely you can see his tooth that is about to come out. ;)

    So can you send these pictures on to Calgary? Hugs my friend.

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  6. oh how disheartening Kristen.. (((HUGS)))
    So what is the next course of action?

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