Monday, October 7, 2013

Roller Coaster


Sorry for the repost from the other blog!

Last week was such a roller coaster we are still trying to recover from the ups and downs. We had the MRI and she did really well. By Thursday afternoon she was pretty much back to normal. She woke up Friday throwing up and really nauseous. When I called the pediatrician for the results of the scan I mentioned the vomiting. The combination of the brain issues and the vomiting put them into panic mode. I was thoroughly irritated. They wanted us to rush her to the CHOP ER right away. I was politely trying to explain that if we rushed her to the ER every time she was dizzy or nauseous we'd be in the hospital weekly. I realize that they feel overwhelmed by her rare diagnosis but it was a little frustrating.

What thoroughly frustrated me is that the nurse was telling me that they did not have the results, they were never sent to them. I explained that since they were the office writing the script it had to be there. She told me (not so politely) that in the time it took her to track the results down and have a doc look at them I would have wasted the day and put my kid at risk. The lack of empathy or politeness just set me off. I was nice enough but had had enough. I asked her to please get the results, show them to the doc and call me back. Once glance at the scan would tell them whether we needed to rush or not.

I decided to call Abby's neurogeneticist at CHOP and see if he would be kind enough to take a glance at the results. The staff there was great and put in calls to a triage nurse AND the neuro geneticist. The neuro called me back within two hours. (The nurse at the pediatrician's office DID call back within half an hour to say they got the results... a little quicker than half the day I guess). The wonderful news was that the change on her scan since the last scan was minimal. We will have to talk specifics with the new neurologist tomorrow but overall there was nothing emergent. (Thank God!!!)

I didn't hear back from the pediatrician until 6 o'clock and she had NO IDEA what she was talking about. Obviously she was not comfortable dealing with the diagnosis.

So, it was a whirlwind. It was a long, scary, stressful, anxiety provoking week. I am not sure how we got all the way through it. So tomorrow we will see the new neuro and get the ins and outs of the scan. It sounds like nothing will require surgery at this point (again, thank God!) so we are very, very thankful!

1 comment:

  1. Hi, we have an 8 month old son who was diagnosed with this when I was carrying him. When he was born he didn't seem to be showing any symptoms but now he's older things don't seem to add up with him, he has started head shaking its been going on for months and consultants, specialists, GPs don't know what it is ? He also has bouts of screaming, we were hoping for some advice from someone who lives rhombencephalosynapsis just as we do. Thank you
    Natalie

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