There has been a soupcon of emotion around these parts over the last day or so, much of it stemming from an appointment we arranged for Tom yesterday. In the context of the appointment we didn't find out anything that we didn't suspect already but the act has been the equivalent of merrily flicking the scabs off a number of old emotional scars that Nik and I like to keep to hand.
The appointment was with a children's physiotherapist who specialises in assisting children who have suffered brain injury.
There's scab number one right there.
Ever since the darkest days were pushed behind us and we were no longer waking to find that Tom was still in a coma, the small matter of the lesions that revealed themselves on Tom's MRI ('felt to be secondary to meningitic end arteriolitis') had been placed carefully to one side. The horrific imaginings that we had tortured ourselves with following the ICU consultant's carefully worded explanation had simply not come true. Although profoundly deaf, Tom was unchanged in terms of intelligence, character and capacity to speak. Within a couple of months he was walking on his own again and nagging fears there were abated. He was the same boy.
But yesterday's appointment brought it all back. The physiotherapist's assessment was that yes, our friend Deborah was on the nose with her diagnosis and Tom has some core stability issues which he does his level best to accommodate and conceal. There is also a degree of hypotonia - or poor muscle tone - which wikipedia identifies as a possible outcome of meningitis, presumably because of damage to the area of the brain that coordinates skeletal muscle.
As I said above, this isn't really news although it does shed a different light on how we move forward. Up until now, as is obvious from this blog, the focus of our attention has been Tom's hearing and his learning to make the most of his cochlear implants. His progress with these has, and continues to be, outstanding. Now we must help Tom in whatever way we can with this challenge.
There is another old wound that has been opened by these events though... Linda, the physiotherapist who came and assessed Tom and is starting to work with us on exercises and games to help him? She's a private physiotherapist.
Tom made two outpatient visits to the children's centre for physio before he was discharged over a year ago. He had only been walking again for a couple of months and was much more unsteady than he is now. Yesterday we discussed the prospect of getting Tom re-referred in the light of her assessment but Linda, a former NHS physio herself, suggested it would be pretty unlikely that he would be regarded as a priority and seen any time soon.
Well that felt good and left us in good cheer...
I must state again that we are eternally grateful that we still have our son. To the doctors in A&E who quickly diagnosed the meningitis that our GP had missed, we thank you. The doctors, nurses, OTs and physios who cared for Tom (and us) through that three week period - you are all wonderful, dedicated people who gave our son exemplary care and started him on his road to recovery.
The cochlear implant team at Nottingham had Tom on the operating table within 8 weeks of losing his hearing and switched on in twelve - incredible work that set up the success story that is our son's language development since.
But it is beyond this acute phase of Tom's treatment that the cracks show and the hurt begins.
I used to be a big fan of the movie and TV series M*A*S*H. Beyond the political references and marvellous satire, the depiction of doctors doing heroic patch-up work as rapidly as they can has stuck with me and is brought to mind now. Whether it be the budgetary constraints, competence or lack of will, there seems to be a point where a patient is considered 'patched up' and 'well enough' to be dispatched back to the trenches. Presumably the necessary target has been met and that patient adds no more value to the hospital or PCT's ratings. Whatever the reason, it is too soon.
Tom was considered 'well enough' with one implant and 'well enough' with a degree of hypotonia but is he? It is patently obvious that more could be done as we have found. Through the generosity of a charity, family and friends (and the fact that we have good jobs) we have been able to do more - to continue Tom's recovery.
And the main reason? Because we've got enough money (just).
Enough to pay for a second implant, enough to pay for Auditory Verbal therapy and now we will find enough to pay for private physio.
This isn't a case of parents making exaggerated requests for superfluous treatments because they regard their child is special in some way - these are obvious needs identified by respected professionals... and turned down by others.
I don't have an answer for this... I recognise that the vast majority of health professionals we have been in contact with would have loved to carry on Tom's treatment but thinly spread resources just won't stretch. What I hate though, is the inherent waste, the failure of processes, the inconsistency of provision and the deceit.
Something has to change because this isn't quite right.