Not a good week

The week started OK and really there was nothing to suspect that things would go pear-shaped.

On Tuesday, Laura had 2 hours respite booked, so as usual, she went out with the two carers whilst I dashed to Fosse Park to get a birthday present for Mick. Not long after I got back home and just before Laura was due home, the phone rang and it was Mel, one of the carers. They were on the A46 and Laura was having a tonic clonic seizure. It had been going for 1 minute and they wanted to know what to do. I advised them to carry on home but if it kept going beyond 3 minutes then they would have to stop again and give her paraldehyde. I rang a few minutes later and they were coming up to the Quorn turing off the A6 and it had calmed/stopped (she wasn't sure). So they carried on home but when they got here it had started up again and she definitely needed oxygen and paraldehyde straight away. We also called the ambulance.

It took quite a while (too long and def over 8 minutes) for a paramedic to arrive. Mick was still on the phone to the ambulance control and advised them we still needed an ambulance PDQ. The paramedic confirmed this as he had been before and knew Laura's history. It was ages and ages for the ambulance to arrive but as soon as they did they carried Laura into the ambulance and we bombed down the A6 to LRI. It was 2 o'clock in the afternoon by this time and very busy even with the siren and blue lights it took 25-30 minutes to get there. Laura was thrashing around, still seizing all the way there. The ambulance paramedic told me that they were a Nottinghamshire ambulance and had been the other side of Melton when directed to us which was why they took so long to arrive. (Grrrr, I can feel a complaint coming on, not to criticise the people who came out but the system which has allowed this to happen again - we made a complaint in 2003 and they assured me they would send an ambulance not a paramedic and would place a flag on their system).

The team were waiting in Resuc and thankfully it was not too busy. I had to convince the ER doctor to get some lorazepam into her. He was pre-occupied with taking blood and I don't think he thought she was still fitting. Her heart rate was 150+ so she definitely was. When he finally gave her lorazepam she gradually calmed down.

We went upto the Children's Admissions Unit and stayed there for a few hours until we were transferred to Ward 14. Laura was totally out of it, as to be expected. They kept her on oxygen and a monitor for the first few hours and she was quite settled.

I stayed the night with Laura but only managed a couple of hours sleep, despite it being quiet on the ward. I just cannot sleep in hospital, mainly down to the nurses chatter and laughter.

Anyway, we decided to start her on Topamax. She definitely needs another medication as the small dose of clobazam and the stiripentol just aren't enough. She has been rather seizury for a few weeks now, mainly upset by environmental triggers like heat, light, noises, patterns...

So we will see how it goes. Laura came home yesterday and was thrilled to be back! She really is quite subdued in hospital and a different child in her own environment.

Is everything edible?

Laura has had crisps and chips, tomatoes and flowers! Not sure geraniums and petunia are good to eat though, so I'd better keep her away from the flowers! It's one thing picking them, another thing eating them!

Lots of tears and screaming today, not a happy bunny. Her mood is very up and down.

Eating again!

Since Laura came off Concerta (Ritalin), she has gradually started to eat a few things, not every day and not enough to sustain her, but a good start.

Today she has eaten quite a bit and it's not even 3pm. She started with some apple (she's always refused it before and generally prefers softer fruit). We only gave her apple because she was wrestling with Alex trying to get his half-eaten apple off him!! So we cut one up for her and she ate most of it. She particulary liked the core! Then she had some celery and nicked some bread crusts intended for the hens.

Finally she sat at the table and had a slice of toast, which she ate most of. Alex was sitting next to her eating a toasted sandwich (his staple diet) and she was eyeing it, so maybe we will try one of those next!

She has been more hyper the past couple of days so I guess the Concerta is totally out of her system. Perhaps we will need an alternative but we can discuss that with Dr Jay when we see him in the week.

Respite

Jenna from the Diana nurses came today and we went through the paperwork to initiate the respite from the Diana nursing team - we learnt a week or so ago that we had qualified for it.

We are going to get 8 hours per month, in two blocks of 4 hours. One will be a Sunday morning which I asked for so that I can get to Mass at least once a month, and the other will be an after-school session 4.30-8.30 which will particularly help me after my operation. In fact the first one is the afternoon she comes back from Rainbows on 5th Sept, so that is great timing! But before that they will try and do some getting-to-know-you visits and the first of those is next week.

The staff will have to be trained on the job with them having to be signed off as competent for each individual child which is rather cumbersome but how they operate. The paperwork was fairly horrific too as it's pretty much like they use on the Children's ward and more detailed than either Rainbows or Glenfield! But it will be worth it, especially to have some extra help after my operation.

House (again!)

The saga continues...

Our buyer has applied for a buy-to-let mortgage for his house as his sale fell through. That has finally been granted but they have had to amend their main mortgage and that is still going through, although hoping to complete tomorrow. Meanwhile our seller (Bartons) rang yesterday to say they don't think August is do-able and suggested end November!!!! When I'd got up off the floor, I mumbled yes well I'd have to discuss with Mick....

So we have been out this evening (Laura is at Glenfield) and come to the conclusion that we'll stay where we are. It's all too complicated with the buyers, the sellers and the building plans for no.5, and plus not to mention how close this is all getting to my operation, so we'll stay put and sort out what we need to here (basically CCTV from Laura's room to ours). Actually it's a big relief as I was starting to stree about it all, especially as the clock was ticking, we had no date and hadn't started packing. So just gotta tell the agents and the Bartons tomorrow.

Nappies again

After complaining (to Vera MacDonald, Lead Continence manager at the PCT) about the new nappies, she assured me that she would reinstate the Tena nappies for Laura. That was 4 weeks ago.

So today, with only 1 pack left, I went to Barrow Mill to pick up nappies for the next month. There was a chap behind the counter who was very unhelpful (not surprisingly he is leaving on Friday - good riddance!!), saying there was no new card for Laura and so no Tenas had been ordered. He offered to do nothing to help so I waited to speak to the much more helpful lady and she got Vera on the phone. She assured me she had sent a request through to Barrow but the girl who deals with it was off sick and the lady (Karen) covering her job was on holiday for a week and no-one else was allowed to operate the ordering system due to the lage amounts of money involved!! Yeah right, let's hope they don't both go under a bus then as they have no Plan B.

So it looked like I was going to have to accept the Euron (yukky) nappies until an order could be done next week, but good old Vera took herself down to the depths of Coalville Health Centre and found me three packs of Tenas in Laura's size! So I just have to trek over to Coalville to collect them. At least these will last for a couple of weeks and Vera promises that she will speak to Karen on Monday and make sure she places the order - I'm not holding my breath and may well nip into Barrow and speak to her myself! Apparently the ordering can only be done on a Monday for deliveries the following Monday, so very unresponsive system that is too. Good old NHS, gotta love it!

A good day

Laura had a good day today. She was at the Rainbows playscheme and was very happy to go this morning and everyone remarked on how happy she was. She only did a bit of skin picking and although she has been loud shouting a few times, it's no more than normal.

Laura is sleeping so much better without the Ritalin too. She slept until past 7 this morning and went to sleep very quickly last night too. So fingers crossed it continues.

Ritalin

I decided to try Laura without Ritalin for a few days. Someone posted on our message board that skin picking is a side effect of Ritalin and as Laura's skin picking has got worse since we upped her dose, I thought it may well be the cause of this behaviour.

So yesterday was day 1 without Ritalin. She was very loud and lively in the morning and started doing some of the behaviours that she hasn't done since she went onto Ritalin, like the repeated banging of the doors. I had to shadow her all the time which is rather wearing, especially as I had a lot of work to do for the conference next week.

In the afternoon we went into the garden because the weather had improved. It's been a while since she has wanted to go in the garden voluntarily and not wanted to come in within 10 minutes, so that was really nice to see. At first she just did her usual wandering around picking flower heads off and paddling in any bits of water she could find, but then Vicky and Lucy arrived and Laura went to the swing.

Laura's not wanted to go on the swing for ages. She stayed in for about 20 minutes!! Poor Lucy wanted a turn but I didn't want to get Laura off until she was ready, so Lucy did her jigsaws instead. Then Laura went on the slide, another first in the past year, and just pottered around the garden for a good hour. The sun was hot and bright and she did have a bit of a turn and I took her inside and bathed her - she was very grimy!! She had a really nice time in the bath but then fell asleep on the bathmat. I think she was quite seizury as she was jumping at the slightest noise.

Later, I got her up and dressed and she watched her DVDs whilst we had dinner. I did her feed rather late and paid for it as she threw it up all over her bed. YUK! It's back to the pump tomorrow I think.

This morning she slept in until 9am which is amazing! Ritalin causes insomnia so is probably the cause of her early wakening (usually 5 or 5.30). I did have her video monitor on as I was rather worried about her being asleep for so long.

So today is day 2 without Ritalin. She has been quieter this morning but did have a seizure just before her breakfast feed, so is obviously a bit unstable seizure-wise. We have an appointment with Dr Jay the week after next so I will discuss meds with him.

Fell out of bed

Laura went to bed at about 8 o'clock last night and as usual played and chatted for a bit before nodding off at about 8.20pm At 8.50 there was a crash from her bedroom and I found her on the floor having a seizure. It only lasted a couple of minutes and thank goodness she didn't seem to have hurt herself. She wanted me to stay with her until she fell back to sleep.

This morning she woke up a little later, is a little subdued and has had one seizure, so I will have to keep an eye on her today.