Tuesday, 13 November 2007

13Nov07 – Advance Clinic 6 Day 2

Unfortunately Lucy's latest medicinal cocktail did not quite have the desired affect and we woke at 3:30 this morning to find that we had another fit on our hands. This time it was almost certainly caused by a combination of temperature and infection. We waited a few minutes to be certain that it was definitely a fit before administering the rescue dose of Midazolam. We then waited a further five minutes for it to take affect and when this didn’t happen we called an ambulance. This is becoming a familiar routine just like the monthly big shop. The ambulance arrived about 10 mins later and by this time Lucy was showing signs that the midazolam had started to work because she was certainly more relaxed. However it was decided to take her to East Surrey Hospital A&E to get her checked out. I followed in the car and arrived not long after the ambulance to find the usual state of affairs in full progress.Lucy was hooked up to all the monitors, the Paediatrician was struggling with the first cannula (which failed) and bloods were being taken. It was all very calm and familiar. The fit was certainly not as bad as the previous two but they were not convinced that Lucy had stopped fitting so administered half a dose of Lorazepam just to be sure. Lucy also had to have a paracetamol suppository to control her temperature.The people that dealt with Lucy were excellent and really made us feel at ease. When they realised that Lucy had cerebral palsy they immediately looked to us to describe what Lucy’s normal is. They listened carefully and I believe treated Lucy accordingly. They were initially concerned how stiff Lucy was and could have interpreted this as symptomatic of continued fitting but discounted this when we explained that Lucy has high muscle tone and is naturally quite stiff in her arms and legs. This probably saved Lucy from an unnecessarily high dose of Lorazepam which would have completely knocked her out and meant a couple of days in a strange hospital. We were both particularly impressed with the Paediatrician. I was asked to help lift Lucy so the nurse could take her temperature and as I lifted her, Lucy immediately stiffened in response to her discomfort. This type of movement is easy for Dawn and me to interpret but not for people who do not know Lucy. The Paediatrician immediately said it was purposeful movement which indicated to her that Lucy was no longer fitting. We didn’t say anything at the time but I can’t remember anyone else in her position ever being so intuitive or understanding of Lucy’s unique way of communicating. In these situations we always have to explain what Lucy is like and in most cases we feel that the professionals do not really listen and draw their own conclusions, so it becomes a bit of a battle between us and them to ensure Lucy gets the right treatment. However today we suffered none of this anxiety because the A&E team listened and immediately switched on to Lucy’s individual circumstances.They were sensitive and sensible in the way they delivered their treatment, not afraid to treat Lucy as an individual with her own ways and unique circumstances. I wish more hospitals could have the same quality of staff who are able to see past the CP tag. I am sure they could tell that we were not too concerned having been through it a number of times and therefore were happy to send us home after a monitoring Lucy for a couple of hours. I was convinced we were going to be stuck there for the rest of the week and it was such a relief to get back in the car at 7:00 am.

Although we only had a few hours sleep, we decided to go to our session at the Scotson Advance Clinic (www.advancecentre.org.uk) today. We needed to learn the exercises as they are quite complicated this time and it is a very long way to come back. We gave Lucy the day off and practiced the exercises on ourselves which was actually a very good way of learning them but it was quite difficult to stay awake lying on the therapy bench. We decided it wasn’t sensible to take Lucy in the oxygen chamber today and just let her sleep. She has slept most of the day only waking briefly to be given her medicine. She should come round tomorrow though, as the effects of the Midazolam and Lorazepam wear off.

My cousin Rachel cheered us up tonight by making us a special cake,which was a really nice way to end a pretty exhausting day.


fairenuff said...

I have tears in my eyes reading this post. I know only too well the feeling you describe as you explain your daughter's medical history and your personal intuition about the situation then get ignored in favour of more standard stuff. I wish with all of my heart that Lucy didnt have to suffer these fits but it makes me feel overwhelmingly happy to know that the doctors LISTENED. You made me cry! Hoping for a brighter day for all of you tomorrow.

Anonymous said...

Poor little Lucy - for this to happen again, especially while you're down there. Glad it was only a very short hospital visit and the hospital staff were so good. As you say - a pity they can't all be like that. In fact it's quite wrong that they aren't ! Hope you all have a good day today (14th) to make up for it.

lots of love
Susan XXXX

Anonymous said...

Sorry Lucy had another fit, but glad to hear that the staff listened, its drummed into us enough in lectures so glad to hear it is outside in practice as it is, like you highlighted, the key factor in enabling someone to recover, you can't push someone to be what they weren't before! The choc cake looked yummy and I wish i was there to share it, I hope today went much better and that Lucy May is brighter
All my love
cousin Emma

Nicky said...

Hi there
I will concentrate on my spelling this time. We were sorry to read about Lucy but glad she was cared for well by the hospital. Hope she continues to improve. A hug for you all.
Nicky and co

Anonymous said...

How frustrating and upsetting for you to have another visit to the clinic derailed for Lucy...do hope she recovers quickly. In the meantime I hope you and Dawn learn your exercises well enough to practise on Lucy when you get home !
Special love - Ann (Durban)

Anonymous said...


I was the Paediatrician so thankyou very much. It is lovely when someone appreciates care you give. Hope the treatment is going well

Dawn said...

Hi to the 'Paediatrician' (Sorry I don't know your name!)
Just wanted to say thank you once again. We have been in the same situation time and time again and it is never easy. However it is amazing how the 'same situation' can be so different depending on the care and understanding you receive. On the day that you and your team cared for Lucy, we experience true understanding and please believe me when I say, 'It makes all the difference'