This post serves a two-fold function.
It’s spurring me on to get writing and it’s keeping my fingers and brain away from the naughty world of Google (& before we go much further, I don’t mean THOSE kind of bits of google that should come with parental advisory warnings!!)
I don’t know about you but I’m a firm believer that if you typed the words “broken leg” into google (other search engines are available 😉 ) it will tell you, fairly near the top of the list of complications and implications that you can DIE a nasty, painful, pustulent-filled (I added that phrase specially for my elder sons who are fascinated with all things grim!) death from such an event. So having a medically complex child and finding another newly added ? query diagnosis to the list of “co-morbidities” (even the name sounds disturbing but all it means is the presence of one or more additional disorders/ diseases co-occurring with a primary disease or disorder; or it could also relate to the effect of such additional disorders or diseases) is never a good thing.
Despite appearances to the contrary since special needs parents (SEN) days are inevitably filled with numerous medical appointments/chasing up thereof appointments/letters and consultant’s as well as the mundanities of every day life, when we should be conserving our very precious sleep, us SEN mum’s and dad’s have a predilection for late night dates with Dr Google.
Things always seem worse in the small hours when you can’t sleep right? Well clearly common sense should prevail and no dicing with the harbingers of doom in the form of internet proclivities should be allowed…well maybe a spot of pinterest but that’s it. Whoop whoop screaming sirens, stay away from Wiki/Google and the like.
So to receive a discharge summary following the Minx’s most recent stay in Great Ormond Street with an added, somewhat throw away ? diagnosis added into the mix, is not a good thing for my nerves.
A discharge summary if you have not seen one isn’t even as helpful as the nicely complicated, rambly letter from the consultant that follows up information post appointments and leaves you (well me at least) requiring a dictionary for every 4th word. No. A discharge summary is a rather curt, 3 or so page listing of the patient’s name, address, GP info, reason for admission and a list of blood/biopsy results that involve an awful lots of numbers and brackets with an indication that results will be discussed at the next clinic appointment.
One would hope that if something of (potential) significant had come to light, a phone call, follow-up letter or actually just waiting to discuss at the scheduled appointment would be the logical and kindly manner in breaking to someone that things may have changed, that a new diagnosis or syndrome could be added to the mix….
So here I am hoping that the ? suggestion could be a typo, from some one else’s notes (yes that does happen) or just been added miscellaneously by some poor admin bod who can’t read the Doctor’s handwriting (have you seen medical peeps handwriting?! I think it’s a mandatory qualification when they pass their medical exam boards that their handwriting has to be utterly illegible, some weird form of hieroglyphics or such like!)
Of course I may be putting the cart before the horse since I am resisting (mostly) the temptation to read up and like many of the things we have been told on this undiagnosed journey over the last almost 7 years, it may or may not be clinically significant over-all so there really is no point in getting my knickers all in a twist is there?….& perhaps if I keep reciting this mantra enough times I might eventually believe it…
We have appointments and tests coming out of our ears in the next few weeks so my top tip this week is that if you are interested in investing in the stock market with any spare cash that you might have lying around (ha!) invest in rail/train net works – I may just as well redirect the hubby’s salary straight to Virgin/On the Train line and London’s black cab industry between now and December. Also, the trips will necessitate frequent refuelling at Costa and the like and no doubt, you might as well throw in Disney and Build-A-Bear investment stocks too because we all know what happens when Minx has scary/brave necessitating appointments right?!
Hoping that the next time I write it might be because we are a little further forward on our undiagnosed journey and that Dr’s Google, Wiki et al have not been required for a consult!!