Wednesday, November 11, 2009

Google is my Best Friend

Who was I trying to fool? There's no way I could wait 2 weeks to follow up! At 8:30am I was on the phone to Sick Kids Hospital trying to determine when we will be seen. 2 very unfriendly clerical staff later I now know that there is no such thing as an "urgent referral" fact, the second receptionist had a snide little chuckle when I told her that Dr. J had sent an urgent referral. She was all too happy to inform me that how urgent a referral is is not up to the referring doctor, or up to me or anyone else, it is at the sole discretion of the neurologist who triages all referrals. This doctor, whose name I am not allowed to know, will be reviewing referrals this Friday. So apparently if I call back on Monday this woman, who obviously has never had the experience of being told that HER child has a cyst in their brain, may be able to tell me when our appointment is. It really should be a prerequisite for ALL staff at a children's hospital to have a bit of compassion and understanding.

Aside from all of that I have of course done a whole lot of Googling, and have also managed to get a copy of the actual MRI report (Sick Kids told me 4 weeks to get a copy, luckily Dr. J and our own family doctor treat us like actual people and provided me with a copy today). According to the report the type of cyst Joey has is an "arachnoid cyst", more common in males, and more common on the left side but Joey's is on the right. It also states there is some "increased FLAIR signal in the parietal white matter". I'm not exactly sure what this means in layman's terms but it seems to mean abnormal electrical activity in the brain? The myelination is consistent with his age, which is ironic since this was the only abnormal finding in his first MRI and the reason for the repeat exam!

There is a LOT of information out there on arachnoid cysts and it's difficult at this time to apply a lot of it to Joey specifically. In what I've read it would appear suspicious that the cyst didn't appear on the first MRI as they are usually present at birth. What is scaring me the most right now is a possible rupture if Joey sustains a fall or blow to the head of some sort. What is making me sad is that it seems highly likely that Joey has been experiencing headaches but of course is unable to communicate to us when something hurts. The idea that my baby could be experiencing pain and he can't tell me so therefore I can't try to fix it is something NO parent or child should ever have to experience.

We are seeing our family doctor on Monday so hopefully she can help me interpret this report a little bit.

- P, J, J & B

1 comment:

Sandycove Whittakers said...

My heart goes out to you.

Unfortunately compassion and sensitivity are not among the compulsory qualifications to work at Sick Kids. Our niece, (whom I will call "S"), has a four year old daughter, "A" who has a rare genetic disorder which requires regular follow-ups at Sick Kids. Last July the little one had to have an echo cardiogram and an ECG. Afterwards they had to meet with a nurse to go over her medical history before seeing the doctor. Unfortunately little "A" had had it by then and was acting out when they tried to take her oxygen stats. The nurse then glanced over at "S"'s new baby sleeping peacefully in his stroller and remarked, "Now, was he a good idea?" How insensitive was that?

Keep up the good work - you are doing an excellent job advocating for your child.