Sunday, 16 February 2014

It's the unpredictability.....

I haven't blogged for a while. Not because there isn't anything to say, but because there is so much to say that I don't know where to start.

We have three major issues going on at the moment, alongside the usual sets of appointments, sorting out equipment and general Rett Syndrome administration (as well as obviously trying to live a semblance of a normal life).

The first one is the major home adaptations that we need to have done. I initially blogged about this here. We are entitled to a Disabled Facilities Grant from Social Services for this work, which would include a lift that goes from our ground floor, through the ceiling and up into Jessica's bedroom, as well as ceiling hoists and other adaptations. However, everything to do with Social Services (especially obtaining money from them, even if it is money you are legally entitled to) is a very slow, painful process. We are currently trying to persuade them that a tick-box, standardised approach to the adaptations is not what we want, and that with a little bit of thought and imagination we could create something that is much more suitable to our family life and meets Jessica's needs and preferences a lot more, while still remaining within budget.

Our second issue is also Social Services-based and is respite care and support for our family. We had initially contacted Social Services to request an assessment, as what we were having (one night's respite a month) was not fully meeting our requirements, as we need some help at tea and bedtimes, as it is impossible for one person to manage Jessica's care at that time of night while also looking a lively toddler. However, when Jessica's condition deteriorated and her care became more complex, our one night a month was stopped and the process for a new assessment of our needs commenced. However, this process can take 35-40 days (or longer, as we are discovering). This means that we are currently left with no respite or support a present, despite us struggling with all Jessica's new needs (oxygen at night, monitoring at night, being fed through an NG tube- a tube that goes into her nose, and down to her stomach). We have had a total of 3 nights' respite since July 2013. We are currently in the ridiculous situation where Social Services say Jessica's needs are too medically complex for them to provide support and that the Health Service should step in, whereas the Health Service say that she is not medically complicated enough for them to help, and that Social Services should be providing us with respite and support.

On top of this, we are still trying to get to grips with the third issue, which is the developments in Jessica's condition that have taken place since mid-December 2013. I blogged here and here about events in December, and also here about how things unfolded in the beginning of January. Well, it is now 9 weeks since Jessica was first admitted to hospital in December, and I have now lost count of the number of hospital admissions, the number of chest infections, ambulances, time spent in A&E or emergency clinics that we have had in that time, with doctors scratching their heads in confusion at what could be the matter.....

This is all new to us. Obviously Jessica has lots of the medical complications that go along with Rett Syndrome. However, up until now, Jess hasn't really had any more coughs and colds than any other child, and we had never had an emergency admission before. But now we don't know whether we are coming or going. Many nights we go to bed, hoping we are not going to have to call an ambulance before morning. So a lot of our plans have had to be cancelled - and not just social ones, but meetings and appointments that we had arranged, trying desperately to sort out the respite care situation and the home adaptations that I have described above. Hospital appointments and tests regarding Jessica's upcoming 2 or 3 surgical procedures that she needs have all had to be postponed, and favours called in to organise emergency childcare for Anna at short notice. It feels like we are just bouncing from one crisis to another.

It's the unpredictability that makes this hard to cope with - we make and re-make arrangements, never knowing if we are going to be able to keep them. Socially it is tempting to just give up trying, but that seems a direct route to depression and complete social isolation. I just want things to calm down and get back on an even footing, so we have time to catch our breath before Jessica's operations come round.

Jessica however, as always, is taking everything in her stride - she is missing going to her school, and seeing her friends, and obviously has been feeling very unwell at times over the last few weeks (and I am sure she must be fed up of needles and blood tests). However, she always bounces back with a smile, a giggle and kiss for her mummy, daddy and little sister.

This is a photo of her from earlier today, enjoying a rare bit of sun on her face. I am very, very proud to be her mummy.