Peace of Mind…

Today we received a present! A Sensorium Epilepsy Alarm courtesy of the Muir Maxwell epilepsy trust.

Basically this should spell the end of me sleeping with one ear open just in case Jack has a seizure, as this nifty gadget should let me know. Obviously it will take some time to set it up to Jacks specifications…as every person is different. And it won’t replace my nightly checks. But this can only be a positive in assisting & alerting me to Jacks needs during the night.

As usual, no one told me about Muir Maxwell. It was down to my own research that alerted me to their very existence. If you know of any child in the UK that would benefit of an epilepsy alarm, please visit http://muirmaxwelltrust.com for more information.

Driving it home every five years…

So that time has arrived again. The dreaded Disability Living Allowance renewal paperwork landed on my doormat yesterday, and for those unfamiliar with what this means, it’s basically a big booklet that I have to fill in on Jack’s behalf. Although some people who claim this benefit are awarded it for life, Jack has never been that lucky – even though he’s profoundly disabled and not likely to spring out of his wheelchair, dance a jig and start quoting Shakespeare backwards, every 5 years We have to claim again.

Filling in this paperwork, for some reason, always has a knack of sending me into a spiraling depression if I’m not careful. I think its because not only does the paperwork take a good while to complete, the questions repeat themselves occasionally. Because intense concentration is required, I find that the questions (and the answers) are thoroughly absorbed…thus driving home the enormity of the everyday situation we face, and indeed what the future will & won’t bring for Jack. But as I’ve written about before, I do have methods of dealing with those days when everything seems remarkably dark emotionally.

All in all, depressing paperwork aside, life for Jack is ticking along quite nicely. In the last 12 months, I have developed a knack of prioritising appointments and events that are likely to add more stress to our lives. Appointments that are the result of over zealous professionals are dealt with according to their prospective level of stress – and if I don’t deem them worth the stress levels, primarily for Jack, and of course if they are not a medical necessity, they are re-arranged for a later date. This system is working very nicely for us.

So spare a thought for me this week with my Nemesis paperwork. I’m filling it in using 15 minute sessions, which is a trick I learned from The Flylady and her system which you too can learn about here.

It’s Been A While…

….but life has been as busy as ever.

We had a lovely festive season….really enjoyable, and I’m happy to report that I’ve started 2011 feeling a lot more positive than I did starting 2010.  Sure, we still have crap to deal with, but I refuse to let it get it to me, although I will be having a quick vent about a certain situation that’s going on, but this is merely to highlight the failings in the services around Jack YET AGAIN.

Firstly though, I will tell you that Jack’s new transport arrangements are working very well.  I did have my doubts at the start I have to say, and there have been others who have been trying to stir up trouble regarding the transport, but all I am going to say is that if this arrangement ends up being cancelled because of certain people who just can’t keep their big fat mouths shut, then Jack will immediately be leaving school.  No fuss like last year, no half way arrangements, no meetings, no nothing.  I will eliminate the cause of the problem – period.

Now – my latest vent.  I don’t know if other parents of children who are classed as “terminal” have this issue, but wouldn’t you think that when a Community pediatrician persuades you – as a parent – that an End Of Life Plan can only be a good thing and make the inevitable a little more…organised, that they would move heaven and earth to get the paperwork put in place and then distributed to the necessary agencies (ie  Jacks school, the local hospital, his respite, his children’s hospice, and of course the ambulance service)?  Well not in Jack’s case it seems.  I’m not really sure if it’s down to the fact that Jack is approaching the end of his time in children’s services, or whether is really is down to utter incompetence, but getting on for 18 months has passed since I first sat down with a table of “professionals” and basically told them what I wanted to happen when it becomes apparent that Jack is dying.  Now for those of you not in my position, let me tell you how totally harrowing that is.  To have to think about “how you want it to be”, and then get your wishes across without completely losing the plot and sobbing face down on the table is a difficult task.  I have an excellent knack of dealing with these conversations at the time.  I can put my point across very clearly…but I can promise you that after that first meeting I drove all the way home in absolute floods of tears.  For the next few days I broke down when least expected.  But I knew I would feel like that, because that’s how it happens.  Whenever Jack has been seriously ill, or I’ve had to make decisions that no parent should have to make, I’ve been brilliant at the time; in control and totally coherent of every decision I make.  I learned very early on that the days following these choices or events have been horrendous, and I also learned to let it takes it’s course.  If that meant I spent two days in tears – so be it.  I knew that after 48 hours I would be fine again and back in control.

Unfortunately due to various reasons, Jacks plan has been “lost”, redone, “lost” again and was redone just before christmas.  We are now in March.  Upon me chasing it up, yet again, I have discovered that there are some errors and issues within it which now means it has to be done AGAIN.

Well, guess what.  I’m not going through it again.  I know what I want to happen.  I know I want Jack’s life to end as peacefully as possible and with as little stress for his brother and sister and indeed for Paul & I as possible.  I also know that I will move heaven and earth for this not to happen in hospital.  Jack’s hospice is 40 miles from here, if it’s not possible to get there, then I will discharge him from hospital and bring him home to die myself.  But take a second to imagine how utterly harrowing this will be without the correct support being in place.  It really is a case of me just having to get my head down and deal with this alone, but I dread to think how I’ll cope in the aftermath.  But for now, I can’t concentrate on that, because as a family who have a child with a terminal condition you live each day for the best that it can possibly be…..and I refuse to allow what remains of Jack’s life to be marred by administrative cock ups and NHS incompetence.

One of these of days you will see more of me, I can promise you.  Once Jack is no longer here I will make sure the whole world knows just how unsupported some families really are.  I am under no illusion that life will get easier once Jack is under adult services – in fact I know it will be a damn sight worse than it is now.  So all I can do, is brace myself and learn lessons from the crap we have to go through now…..and hope it makes me strong enough to cope.

Recent Goings On

Well you may not believe this, but the transport issue is still not sorted out. At the last meeting The CHC manager was going to scour the care agencies locally to source someone to train to escort Jack to school. As I half expected , no one has been found, so the result of the latest meeting is that they want ME to escort my own son to school. The transport dept will provide a taxi to pick the kids and myself up, then take Matthew & Hannah to school and then take Jack & I onto Jacks school. Same in reverse at night.

I am still processing this suggestion in my head. Should I give it a try? What do you think dear reader…. Let me know.

- Posted using BlogPress from my iPod

Yet Again….

Just a very quick update on my last post. Jacks case went to panel on the 20th Sept. He was once again refused.
So now we are in the position of waiting for a care agency to find someone who is willing to be trained.
I get a feeling this could take a long time.

A New School Year Begins….

First of all I have to apologise for not writing an update sooner than this!  I could swear that I created a post via my iPod and published it here a couple of weeks ago, but for some reason it’s disappeared!  Technology is sometimes not all it’s cracked up to be!

Paul and I had a meeting with the manager from Continuing Healthcare a couple of weeks ago, also Jill, who did Jack’s original assessment – which went on to be refused.

I have to say neither of us were looking forward to this meeting – I had certainly had enough of meetings in the last few months, and the summer holidays had given me some breathing space, so to know that the new school year was going to commence with yet another meeting was not a prospect I relished.

To cut a long story short, we were given an apology at the meeting for the way we have been treated by all the agencies concerned with the one big mess that is Jack’s transport to school, and we were asked if we would consent to Jack’s case going back to panel in the next couple of weeks.  Since the last meeting, letters had been sent and received detailing the severity of Jack’s seizures and in light of this, CHC wanted to see if they could put Jack forward once again.  We agreed.

If Jacks case in unsuccessful again, CHC have proposed that they will pay for a carer to be trained to come at 8am to our house and help me get Jack ready for school, to wait with Jack at home while I take M & H to school and then to travel with Jack on a bus/taxi to and from school.  The carer will be trained how to deal with Jack’s seizures.  The problem is…they are having trouble finding a carer!  The last I heard, the manager was going to contact various Home care agencies to try to source someone, but as she admitted herself, it was going to be no easy task!  Jack’s school was approached too, but they refused to supply someone, and baring in mind that they provided an escort for much of the last school year, I can understand why they have refused.  If  they are seen to be providing escorts for Jack – paid or not – then they will have to be seen to be providing it for anyone else in Jack’s situation.  Totally unfeasible.

At the moment, and until the escort/carer matter is resolved, I am transporting Jack to and from school – as well as my other two children.  The first week was quite stressful, but I have the timings down to pretty much a fine art now.  unfortunately fate let me get settled and organised and then decided that Jack should start having a few seizures here and there!  Fortunately these moments have struck when I have been parked up, but I dread to think what will happen when a seizure occurs while I am stuck in traffic in town…you can just picture the scene can’t you – nose to tail traffic…no where to stop or pull over…no one to administer oxygen to Jack.  It will happen, it’s only a matter of time and I live in dread of that.  But I have the funny feeling that when it does happen, I will suddenly gain the strength to announce to all agencies concerned that I am no longer putting Jack or myself in that situation, which actually is life threatening for Jack, and that I won’t be transporting Jack to school anymore.  Therefore – Jack will no longer be attending school.  I just hope – to be honest I pray, that Jack will pass the next CHC panel, which I believe is this week sometime, and then something will be put in place pretty as soon as possible.  If not, then we still we get a carer as opposed to a nurse, but when that happens will be anybodys guess really……when someone decides they want the job!

So, when I know more, I will post more…but until then please keeps good thoughts coming our way and keep everything crossed that we soon get some good news.

Moving on…

In the last couple of weeks we finally got our WAV!  For those not accustomed to disability “speak”…Wheelchair Accesable Vehicle.  We are finally free to do as we want, when we want, without having to take Jack’s wheelchair to pieces and lift him in and out of the car into (what is now) an outgrown car seat. 

Not only am I totally cock-a-hoop about this, but Jack absolutely loves it!  We have the choice of him being in between his brother and sister or at the back if we are using the extra removable chair.  Jack is currently at the back as I haven’t yet attempted to move the removable chair.  Will probably sort that out when we have sold our other car (which now must be a priority!).  However, to see Jack’s face when he is in the car is wonderful.  He’s no longer cramped into a seat that’s too small, he has tons of room back there and he LOVES it! 

Paul, initially, pulled a few faces.  This car doesn’t have a complex trip computer on as our old car does, and that’s got up his nose a bit….I suspect only because he can no longer spy on whether I have been driving the car “economically”.  He had a few other niggles too, but to be honest I can’t remember what they are because I don’t care!  We have freedom and that’s all that counts!

The school transport issue is still rumbling on.  To be honest the stress of it has caused a lot of problems.  I don’t feel that it’s my problem to sort out – therefore I could be seen as not being proactive enough in the matter….but I tell you what  -  I don’t give a fig.  My son deserves the care that he has been denied.  I suspect that the transport dept are going to try to push the issue of transporting Jack onto me from september.  It would cause a lot less hassle.  However, Matthew and Hannah’s schools won’t give me a parking permit, and I am damn sure I am not parking miles away and leaving Jack in the car unattended. 

The official reason for Jack being refused a Continuing Healthcare Package is that his seizures currently respond to protocol.  Meaning that Stesolid and oxygen work in bringing him out of the seizure.  I find this appalling in the fact that the day that Jack “stops responding to protocol” will mostly likely mean that he will die. 

I could appeal.  Jack’s school wants me to appeal, but as I wasn’t the one who started all of this crap, I am not having anything else to do with it.  The facts are:

a)  Jack is legally entitled to an education.

b) The local authority are obliged to provide transport as stated on his statement of special educational need. 

c) If I transport Jack to and from school, who is going to help me when Jack has a seizure in the car???  I am expected to deal with it myself! Well I have dealt with things by myself for long enough.

I don’t care who resolves this.  Be it Continuing Healthcare, Social Services, Transport or Jack’s school, but I have enough on my plate to deal with without being actively involved in arguing over red tape!

And on that note – it’s time to get tea on the go!

xxxx

Should I dare to hope…?

As you know from my last couple of posts this year so far has sucked with a capital S. Apart from death and personal issues, the department that deals with Jacks transport (and the school nurse) decided that Jack could no longer travel to school without a trained escort travelling with him. The reason for this is Jacks seizures. I’ve written about them before I’m sure; he stops breathing and scares everyone witless. He needs oxygen and a drug called Stesolid to be administered if needed – and you have to be trained to give both. To cut a long story short (as usual) Jacks regular transport was withdrawn and Jacks school released one of his learning support assistants to be his escort – she is trained and she knows him very well. However – this was always going to be a temporary measure until a referral to Continuing Care was made. Continuing Care are responsible for taking Jacks case to panel which will hopefully provide funding and a nurse to travel with him on his journey to and from school.

Today was my meeting with a lady from Continuing Care – her name was Jill (Hi if you’re reading this ). Together we discussed just about every aspect of Jacks life; medical needs, condition, communication…you name it, we discussed it. Jill will now visit Jack at school, talk to the school nurse and to Jacks teachers about Jack. She will also visit Respite and talk to them, and will then present her findings to panel on 19th April sometime in the afternoon…so…and here’s where you lot come in…lots of positive vibes to be sent our way please. There are no guarantees with this meeting, and being eternally pessimistic I am not holding out much hope….maybe not so much pessimism and realism! There are other avenues we can explore, but just for once it would be so nice if something could just get done without any bloody brick walls being shoved in front of us. Hell yeah it makes for an interesting life, but it doesn’t do wonders for stress levels I can tell you.
Apart from that all’s ok, Jack is growing up so fast it’s scaring me…he’s such a young man now.

Not so good news….

Jacks operation was cancelled.
As his seizures are not very well controlled, the consultant felt the risks outweigh the benefits.
I am ok with this decision – can’t say that I wasn’t very worried about how Jacks body would cope with the op.
We are being seen in clinic in a couple of months and a final decision will be made then.
Jacks fine. He came home from hospital, had some breakfast (he was nil by mouth first thing) and then went to school.
As for us….tired…very tired. The last few weeks have been hell.

Good news….

Just had to share this.
Hospital rang this morning…Jacks op is April 1st….thank goodness for that!