It really was a case of "third time lucky" for us, after unsuccessfully attempting two previous MRI's (all Sam's doing I'm afraid...or rather, that of the germs which insistently invade his little body), Sam was finally scanned yesterday afternoon just before 4:00pm. It was touch and go for a few hours as our time slot first changed from 08:00am to 09:00am and then from 09:00am to 3:00pm as the MRI unit battled with a staff shortage but we eventually made it in at about 3:45pm, although at one stage it looked like they were going to move us again. We are truly blessed though to have a wonderful friend, Adele, who also happens to work at the MRI unit and who went out of her way to make sure Sam was done. Sam did really well considering by that time he had been without milk or food since 8:45am and really only started complaining round about 2:00pm. Thankfully the anaesthetist we had especially requested come out from Red Cross Childrens' Hospital to do Sam's anaesthetic was so accommodating and understanding and even though it meant a great deal of his afternoon was wasted, he stayed until the MRI unit were ready for us.
The actual scanning and anaesthetics went really well and its an awesome relief to know that Sam does not, at this point, seem to have any sensitivities to anaesthetic as, considering the MRI results, there's the possibility of another surgery in the near future - Sam's scan came back "highly suggestive of a tethered cord due to the abnormally low-lying conus at the level of L3 inferior endplate" (huh?). The second I heard "low-lying" instead of something implying, undoubtedly, that Sam has a tethered spinal cord my mind went into overdrive and I excitedly explained to Dr B that there had recently been loads of e-mails on the RTS listserv about MRI's and TSC and that, if I remember correctly, the crunch of it was that a low-lying cord is not necessarily a tethered one. Well, apparently (Surprise! Surprise!), I had NOT remembered correctly because as soon as we got our exhausted, yet-again-traumatised, dehydrated and starving child settled enough to fall asleep last night I went through all my saved mails as well as the RTS Blue Book's info and what the majority of the correspondence actually says is that in children with RTS, a low-lying cord is usually indicative of a TSC and treated so, ie. surgery.
So, our plan of action is to meet with at least two neurosurgeons so that we can make a completely informed decision about whether we opt for surgery or choose to wait it out a little while longer, whichever one of those decisions is in Samuel's best interest. I must say that I was really quite surprised at how unsettled he was yesterday in the ward. I mean, let's not pretend, Sam has a definite aversion to any person whose title begins with "Dr" or "Sr" or any place where these folk can be found...but poor Sister Marleen (she's the one in whose mouth Sam was merrily mining away when he was last in for kidney & chest infection) couldn't even put his nameband on his wrist - he became totally hysterical. So, I cannot imagine how well another hospital stay is going to go down with our young Smurf, especially if it involves something as horribly invasive as neuro-surgery. For now, until we have met with the neurosurgeons, we just pray...and pray...and pray. For what? That the MRI report was, somehow, incorrect? That the cord rectifies itself? No, although any or both of those would be wonderful, just that we can somehow avoid surgery for now without it having any kind of nasty repercussion for Sam in the way of pain/discomfort or further neurological delays.
Want to hear something quite funny though? I can't say I really gave the actual MRI result much thought through this whole process - my main source of anxiety was more the anaesthetic than the actual reason for Sam NEEDING the anaesthetic...it's like I never accepted the possibility that a TSC could be the case, or more profoundly, that Sam could have such an unquestionable "sign" that he has RTS. It's not the first time its happened and the first incident is just WAY more amusing. A few weeks ago, actually shortly after the RTS conference at the end of July, I was reading through some of the listserv's mail and it turned out many of our RTS sweeties have an indentation-type mark on their ears which many of us parents thought were unique to our own children until one person mentioned it (I think at the actual conference...I was just about to say If I remember correctly, but will rather not go there) and we all excitedly remarked how our sweeties also had it! Just after sending my "Sam has it too" e-mail I kind of slumped back in my chair and thought...well now it's unquestionable....Sam DEFINITELY has RTS! It wasn't the respiratory problems, particular facial features, feeding problems, high palate, huge red birthmark on his forehead, neurological delays or tiny stature...it wasn't the loads of hair, bowel problems, strabismus, severe reflux or extraordinarily angulated thumbs that convinced me...IT WAS THOSE DARN EAR INDENTATIONS! At least now I have a more "acceptable" account of the defining moment of our journey wherein I completely and undeniably accepted that I have a "differently abled" smurf!