Day 1013 – 1019. Monday 4th February to Sunday 10th Feb 2008

Well, monday saw a big meeting for us. It was the day of the Multi-Disciplinary Meeting. Basically, what happens is, each of the people concerned with Karen’s rehab come to the house to discuss the state of play in their field of expertise and to explain where they are going to direct their efforts. Because they are all there, this allows for discussion and a co-ordinated effort. The lineup of people consisted of ….

Syd (the Case Manager)
Steve (the Physio)
Matthew (the Speech Therapist)
Rachel (the OT)

The “other side” had asked to be there (only fair since they are paying for all this treatment), that’s what we call them. Basically, there was (Barry) a lovely chap representing the Norwich Union, and his solicitor (Nichola).

And, our solicitor was present.

It was a packed house, and a packed driveway. 6 cars. Well, I say cars. There were 5 cars and a Motorhome which Steve had brought. It helped break the ice a bit  when he arrived, ‘cos he came out the side door and it was totally unexpected.

Karen was very anxious before the meeting and I could tell that she felt very uncomfortable with all these people here for (and talking about) her.

It reminded me of our wedding reception. I did a bit (in my speech) talking about Karen, and she held her hand to her face, as a kind of comfort gesture. She was doing the same here.

It all got a bit much for her after a while, and she got upset. We took a fag break (Good suggestion Syd) and she felt a bit better after that.

Anyway, basically, it was very constructive and an opportunity for everyone to get upto speed.

The following day, we had an appointment with a Dr Eldabe at North Tees hospital, regarding Karen’s pain and what we thought would be the Dorsal Column Stimulation (or as Syd called it at the meeting on monday, Dorsal Fin).

He was very nice and was accompanied by a nurse and a psychologist. He asked Karen to describe her pain, which she did. She mentioned that it goes down both her legs and also covers her lower back. She later told me, that she didn’t mean back.

kp:- What do you call this area here ? (she pointed to her pelvis)
dp:- Your pelvis.

It feels like the lower back to her (which it is I suppose). This could be key, because one of the things Dr Eldabe said was that the best treatment for Karen would be “Intrathecal Drug Delivery”. Basically, what this is, is they put a machine under your skin in your abdomen that pumps morphine along a line that goes round to the Spinal Sac area at the back (same place they put an Epidural).  I asked why he wasn’t considering the “Dorsal Column Stimulation”, and he said because it doesn’t do back pain very well.

So, we’ll have to mention this at our next meeting.

Anyway, forget that for a second.

He also asked what medication Karen was on. His jaw visibly dropped when she told him the amount of Fentanyl (morphine) patches she was on. He said mostly people are on 50-100ug patches (changed 3-daily). Karen is on 600ug and that this was a lot. Well, we knew that anyway, but it’s good to have it confirmed.

Back to the “intrathecal drug delivery”. He went on to explain that this device gets fitted, it’s filled with morphine and it pumps it directly to the nerves in the Spinal Sac.  He said one of the big problems that this gets around, that it is targeted pain relief. At the moment, Karen is using  a nuclear missile to kill a fly. Nice analogy dp.

She “kills the fly but gets all the negativeness of the nuclear attack”. She kills the pain but has bad constipation (which she takes 9 tablets a day for), slowed thinking, apathy, lack of motivation, etc etc…..

What she will get, following the analogy on, is a fly swatter, that kills the fly and leaves the rest of the room unaffected.

Her body would be getting a fraction of the morphine (I think he said a 1/100th) and it would be going direct to the pain. She would lose all the negative symptoms which sounded great.

I was over the moon. Karen was NOT !

When Karen gets something fixed in her head, woe betide if it gets changed. She had her sights set on “NO MORE MORPHINE” (with the Dorsal Fin ;-) . Totally understandable. Now, effectively, she was “NO MORE MORPHINE”, as everything negative about morphine would be there. But kp still saw it as “Still on the morphine”.

kp:- I am going to be on morphine for the rest of my life (In floods of tears in the car on the way home).

It was so sad. I kept trying to tell her that it was a good thing, but because it wasn’t what she had her hopes up for, she was bitterly disappointed.

She remained tearful for the next FEW DAYS. And her mood swung 100% in the negative direction.

The rest of the week saw Karen go downhill, with zero motivation, I would say close to a breakdown again. Things were not good.

Karen had also decided not to use the fantastic neuropsychologist Pip, because she needed someone who was keen to take on the case. Pip hadn’t phoned to make an appointment, and she felt she needed someone who really had the time to deal with her case.

Coupled with her down-ness, she felt guilty that she hadn’t been able to help Marie (sister) who isn’t very well at the moment.

So, things progressed downhill. On Friday, we had an appointment with another specialist but it’s not bloggable.

The weekend has been gorgeous weather and it has helped lift kp’s mood a little. Unfortunately, I had to do some work, about 10 hours of it as well, which really got me frustrated as I had promised I wouldn’t work at weekends. As well as it being “pain in the arse” work, I felt guilty about kp being on her own. Aaaaaarrrgh ! But, we still got in a nice walk each day with the dogs.

Here it is. I GPS tracked it with my phone. It says it was 2.6 miles long, but 2 miles of that is in the car to get to the railway line. So, just over half a mile.
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That’s it for this last week. Her mood is a little better, not much, but a little.

This coming week is quite a busy one. Here it is…..Dr Millner (btw) is a plastic surgeon and she is seeing him about all of the leftover scars etc from the accident.

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