Busy week this week, with a real dip (but not in mood).

I went to Lancashire on Monday for an all-day trip to attend the funeral of one of my friends’ mum (Marie Brockbank). To ensure Karen was covered, one of the temporary support workers (Michelle) came for the day and took Karen to Boundary Mill to buy some earthenware. Something she has been keen to do for a while.

I enjoyed the day in Lancashire; meeting up with Marie’s family was a big trip down memory lane for me and it was good to be able to see all my old friends.

Karen enjoyed her trip out with Michelle. She told me that she is a really good support worker and she is well on the way to knowing what a Support Worker should be doing. It is quite amazing that Karen stayed awake all day, as she had only gone to sleep at 6am, until 8am !!

The following day we had arranged to meet up with Marie (kp’s sister). Regularly blog readers may recall that Marie had a dog called Strike (lurcher). It escaped out of a first floor window and wasn’t seen for a couple of months. Well, the other week, someone left it tied to a fence on a main road and rang it in anonymously to the RSPCA. The RSPCA picked the dog up and have cared for it since they picked it up. It had been mistreated. Because it was tagged, they let Marie know that he had been found. In the meantime, Marie had took in another dog from the RSPCA called Tye.

So, she is now in a position where she wants both dogs, so we went over to help her introduce the 2 dogs together at the RSCPA centre at Great Ayton. Unfortunately, when we got there, it was all shut up with a note saying they were understaffed and so couldn’t open today

So, we headed home where Steve (Physio) was visiting for kp’s physio session. We also went to the local doctor’s to get him upto date with kp’s medication and get the repeat prescription rejigged. He was well pleased at how well kp was coming off the medication, which was good to hear (from another official source).

Wednesday’s are Karen’s day off and we try and keep them clear of appointments, but Dr Yellowlees wanted to see Karen to see how she was doing. His secretary had sent a letter (which arrived on Saturday), informing us of an appointment on the Wednesday. It was for 5.30pm in Hexham. Well, we try and avoid rush-hour trips and driving in poor lights as kp gets too anxious, so I rang to postpone the appointment. The letter specifically said to ring if there was a problem. Well, by the time Wednesday lunchtime came, I had rung 11 times without any reply. I had left 2 messages and sent at least one email, but no reply. Karen didn’t want to go, but I thought it the honourable thing to still attend and kp reluctantly agreed to come along.

When we arrived, we sat in the waiting area and waited. We waited about 20 minutes, before someone noticed us and asked what we were here for (as the Day Treatment Centre was now closed). We explained. She looked a little concerned. I got bad vibes. 5 minutes later, Dr Yellowlees appeared. He was surprised we were here and explained that he’s normally somewhere else on a Wednesday and wasn’t expecting anyone, but had come for another patient. He asked to see the appointment letter and was a little miffed at his secretary. Had he not been there, I think Karen would have killed me and I would have blown a gasket.

Dr Yellowlees is great and we had a really good chat with him. He was also pleased about kp’s medication reductions and instructed her to carry on the slow, but steady reduction. The best bit was that he discussed her sleeping problem, and he is of the opinion that there is a good chance kp is suffering from sleep apnoea. When he explained the symptoms, we literally ticked them off one by one, she had all of them !! Jane (Karen’s psychologist) had also mentioned this as a possibility, so a theme was coming through here !

We since did some research on Sleep Apnoea and it absolutely fits the bill…..

When you go to a Sleep Clinic, they ask you things like…..

Well, kp does both of the above !!!

And as for symptoms, here is a clip from the NHS website…..

Obviously, I can’t comment on the last one, but the rest are all definitely ticks….

Here are some risk factors for Sleep Apnoea

…. and what drew our attention is the last one. Early blog entries mention kp with a Grade 4 Larynx (the trickiest one), so this may also be an indicator.

So, we may finally have a diagnosis that is spot on !!! Dr Yellowlees is going to have a conference call with Jane (Psychologist) and Dr Parry (Psychiatrist) to discuss further.

Fingers crossed !!

The following day (Thursday), Michelle (temporary Support Worker) came to take Karen to see Joanne (physio) for her left shoulder work.

She brought her back and we just had time for a cup of tea before Judith arrived. Judith is another of the people Karen interviewed for her new Support Worker posts. She was coming to ensure Karen felt comfortable with her driving.

On Friday, we went over to Great Ayton RSPCA again to try the dog introductions. The first visit (which we didn’t attend with her), didn’t go brilliantly apparently, but this time, it did and they got on great and the RSPCS have ok’ed them being together. So, understandably the RSPCA didn’t want both dogs in the same car boot so early on, so Marie is going to pick Strike up sometime in the next week.

From Great Ayton, we dropped Marie, Louisa and Tye back off at Marie’s and then went to pick Adele up and I dropped them both off in town where they shopped around Middlesbrough.

Whilst they were shopping, I went to pick Ethan up (10 year old great nephew) as we had promised we would have him for the night. I took him to Toys’r'us to get his birthday present. Crikey, he knows how to shop ! We went to Toys’r'us, Game and Argos. We ended up with a football, a football pump and some Harry Potter game. He was happy.

From there, we went to pick up Adele and Karen and returned Adele home, before coming home ourselves. He wanted to stop for a Big Mac which we did. And as soon as we were home, he was on the Playstation.

It’s amazing what effect a kid has on the Pollard household. We are not mentally prepared for the hurricane that is Ethan. He constantly talks. kp and I might be talking about something and he’ll shout out ….

Ethan :- “David, LOOK AT THIS !”

as he hotwires a car and drives over a ramp

Ethan :- “How cools is that”

We will try and restartup the conversation before there is another round of….

Ethan :- “David, LOOK AT THIS !”

We don’t know if we are coming or going.

Whilst he is amused by the Platstation, I got kp in the bath and when he knew she was in the bath, he wanted a bath (‘cos he likes the Jacuzzi bit).

Here he is with a little too many bubbles.

Because he is frightened of the dogs, he wants me to sleep with him. But, he doesn’t really know what sleep is. Sleep is shutting your eyes and shutting up and GOING TO sleep. Not for Ethan. It means incessant chatter. To be fair, we had a really good chat and I quizzed him on his Maths Skills, English, History (which he is very good at), Geography, and Religious Education. Bright lad ! “Needs to learn the meaning of silence and the importance of it pre-sleep” would be my teacher’s report.

The following day at 7.30am (!!) Ethan woke up and the chatter continued. kp wasn’t feeling too well, but we didn’t think anything of it at the time. Ethan was straight on the Playstation and I was happy with that, as I hoped it would pass the time until kp was ready to walk the dogs with us. But, she felt even worse later on (hot/cold sweats). So, Ethan and I walked the dogs (although he wasn’t too keen). Now, when I walk the dogs, I am ready in 5 minutes tops ! Ethan (and apparently most kids now) are very self-conscious. He spent 5 minutes spitting on a comb and getting his hair just right !!! I kid you not ! FIVE minutes for a boy !!

And then he admired his “abs” for 30 seconds.

Ethan :- Punch me here David !

David :- Come on, hurry up, you’re worse than a woman at getting ready.

The dogs were having kittens desperate to get going.

Eventually, we made it on the walk. Here is Ethan up a tree !!

When we got back, kp was worse and didn’t want any breakfast, she just wanted to stay in bed. I was concerned, but too pre-occupied with keeping Ethan amused.

After we had had breakfast and a bit more Playstation, it was time to take Ethan back.

When I got home, kp was in a right state. She felt cold, but sweating buckets, her pyjama tops were LITERALLY wringing wet through with sweat and her hair looked like she had been in the shower. She couldn’t relax and was constantly jittery, describing her stomach as churning inside out. She moved her arms and legs involuntary constantly and was very agitated. She was also very confused. She was convinced Kath (one of her Aunty-type relatives) had murdered someone on a train with an axe. I was VERY concerned and was straight on to NHS direct. I did all their questions and they said a nurse would get back to me within 2 hours. But things got worse, so I phoned the local doctor and after following an automated system, I got put through to NHS direct (AGAIN!). When I explained the symptoms, and that I had rung before, they put me straight through to a nurse.

I then had to go another 20 questions. Whilst I was answering all the questions, Karen was shouting….

kp:- It feels like “Cold Turkey”.

Then it dawned on us, that we hadn’t changed her patches the night before (morphine-based Fentanyl) patches. She is down to 500mg so 2 patches is nearly half the patches. Throw into the mix, that one of the patches on her back had come off, PLUS another was a bit faulty and we had to cut a bit off, she was undergoing withdrawal symptoms. kp was absolutely convinced of it. Before this dawned on us, I was instantly thinking….

dp thinking :- “Right, this is the end, this is her Endocrine System shutting down etc etc…”

Silly me in hindsight, Anyway, I think kp was spot on. We tried to explain this to the nurse, but she had to go through her questions.

Eventually, she thought it could be that, but it could also be other things and said we should go to A+E just to be sure. Well, kp wasn’t having that, she was sure it was withdrawal.

So, with that in mind, Doctor Pollard prescribed a 10mg Morphine Tablet for the speed in which it would kick in , and we redid all the patches which we had missed. And within 90 minutes, she was feeling a bit better. The worst remaining symptom was that she was still convinced that Kathleen had murdered someone and she was very disturbed by this. Shortly after that, she decided that she just wanted to get “out of it” and took at 20mg Tamazepam and went to sleep for the night – And although she got up for an hour, she slept the rest of the night.

Today, Sunday, she feels a lot better. Which is a big relief !

She has took it easy, which was the right thing to do and we are going to do our Pizza Night with XFactor tonight.

So, busy and interesting week and another busy one coming up.

Her mood is still up, her pain is in control. In fact, that is ONE good thing about the Cold Turkey she experienced. She wasn’t in any pelvic pain. This bodes well. It’s hard to work out what level of morphine she went down to because of all the patch issues, but I estimate she was probably at about 200-250 (instead of 500). Which (in theory), should mean that she should be able to get down to that level and beyond. Dr Yellowlees had said she MAY be able to come off morphine altogether which would be awesome.

kp and I have been talking about this today. Noone else is ever on such high doses of Fentanyl. The doctors always do a double take when we say her Fentanyl levels to them. Another good example was Adam’s mum Marie. For her pain she was on 25mg Fentanyl Patch and when Adam upped it to 50mg, it floored her. Now, Karen seems not to need the high dose any more, so why did she need it back then. What I think has happened is that for the first year (when the doses were going up and up), kp has been walking on a badly broken hip. Once the hip op was done, the need for the morphine was no longer there. So, in theory, if that was the case, she should be able to come down substantially. Of course, it’s a layman’s view, but kp’s layman’s view of her problems yesterday were spot on. It’s uncanny how often kp knows her symptoms and their meaning very well and sometimes better than the professionals.

So, despite an awful last 24 hours, things are looking up !!! Life is good !