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Posted 2014-10-16T22:15:00Z

Results are in?

Phew, what a week it has been.

Daniel’s MRI went smoothly, the only tears that were shed were Daniel’s (when they put bandages on his hands and we didn’t let him pull them off), and mine (when the medicine took effect on my little boy and he fell asleep).

All the staff (Doctors, Nurses, Techs, Admin) that we encountered at American Family Childrens’ Hospital were phenomenal. I was so stressed about all the what-ifs, and couldn’t have felt better about it all when Daniel’s anesthesiology nurse announced “Okay, Time Out”, and proceeded to lead the team in a pre-procedure verification process. If you’ve never heard of these, you should familiarize yourself with the concept, because I can’t begin to tell you how much my mind was put at ease when I heard the team verifying the correct procedure, for the correct patient, at the correct site, with the correct dosages of the correct medicines. Brilliant.

We got the results over the telephone on Monday. All clear! We couldn’t have been more excited!

But then we got the written results yesterday. That clarity and excitement has since faded, and I am waiting for November 20 to be able to discuss the results with a neurologist (unless I can convince someone to see us earlier. Being as it’s not urgent I think we might be out of luck on this one).

Why? While the majority of the report really was fine and nothing to the extent of Emma’s brain damage was found, nonetheless the first line filled me with trepidation: “There is asymmetry with enlargement of the right lateral ventricle compared to the left, which is of uncertain significance”

Uncertain significance. I’m getting really fed up of that line. It doesn’t say minimal significance, it doesn’t say major significance, it doesn’t say no significance, it says “We don’t know if it means anything. It might. It might not.” Sort of like everything else we keep finding out... I’ve been reading ever since we read the results. It seems that the prevalence of mild asymmetry is around 5%, and widening of the left ventricle is more common than the right. Sometimes it seems as though this can be a totally normal anatomical variation, unless accompanied by other pathology or association with cognitive disorders. I have a horrible feeling that this is going to be a “wait and see” situation……. AGAIN!!!!! Does anyone know of any classes in learning the art of patience?! It’s not coming easy to me!

Interestingly, Emma’s brain ventricles are both enlarged. But hers are enlarged due to “missing brain” around them. I don’t know why Daniel’s right ventricle is enlarged, and hopefully we’ll get some answers on November 20, when we try to assign a little of Emma’s appointment time to see if the Neurologist will compare their MRIs side by side.

In the meantime I’ll keep researching, and talking to doctors to figure out the most appropriate course of action. Daniel’s genetics appointment isn’t until December 8, so we have a bit of a wait now.

Yours patiently (well, not really!)

Katy

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Comments (2)

  • Gillian Cairns
    Gillian Cairns

    Wow! Katie bet you don't know if you are on your head or your heels! Fingers are crossed that all will be good. You have two beautiful children and they have two amazing parents. We are off to Florida tomorrow, tell your mum I will call her when we get back:)

    6 years ago · Reply
  • Christina Payne
    Christina Payne

    Well Katy and Adam I am sure it will come to you soon as you are very good Parents and have two lovely children hope you are keeping well Katy with your new baby ? what are you having this time do you no????? say hi to sue and Ken love you all Norm & Chris xxxxx

    6 years ago · Reply