Can you tell the frustration in the title of this post? It was a long painful morning for the three of us with little answers and more invites to meet new doctors. For some reason we were anticipating this appointment to provide us with answers and solutions to assist Rylan, no such luck.
We were referred to the U of M metabolic clinic by the Geneticist at Children’s after recognizing an abnormal liver from Rylan’s ultrasound. She said it looked to have a fatty texture; this can be a result of a metabolic disorder. We assumed we would be discussing this during the appointment but we didn’t spend much time on it and in fact the doctor didn’t mention it until I brought it up. Instead we spent a couple hours talking about his past (while Rylan got crabby) then an exam from the consultant in training. We met the doctor and she said she wanted some screening done today for a large number of disorders. She referred us to Ophthalmology at the U of M to review his eyes closely. We will head back to see today’s doctor after we are seen by Ophthalmology and have another ultrasound done on his liver. Rylan had more blood drawn today. The nurse in training had a hard time finding a good vein so after three attempts, Rylan was not happy. She eventually got what she needed and we should get the results back in a few weeks.
I am going to follow up with the Geneticist on the liver as the abnormal liver conversation must have been lost in translation. Our pediatrician urgently wanted us to be seen because of it and then today it was not really addressed. Maybe it means one less thing to worry about; we will get to the bottom of that soon.
Rylan waiting patiently (before he lost his patience) for his exam
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