Jo’s confidence is returning but very slowly

The District Nurse came and attended to Jo's burn, which seems finally to have stopped weeping and started healing.

The collaborative care girls came and did some stands and transfers yesterday and today and Jo seems to be doing well.

Jo is still apprehensive but exhibits some more movement in her foot

A trip out to Waitrose for lunch and some shopping was only marred by the performance getting out of the car upon our return. Not unnaturally Jo is apprehensive about getting out of the car on her left side. This has been exacerbated since the fall, which was on that side and has led to her exhibiting defensive behaviour and tensing up when I attempt to help her out. Her rehabilitation has definitely been set back by the fall.

Sitting in the chair that evening I observed that Jo's left foot was leaning to the left at the ankle. Jo was able to move the foot back without any assistance although it did take some effort. When I commented that Jo would not have been able to do that last month Jo said she would not have been able to do it last week. Let us hope her neurological recovery is gathering pace.

Positive signs

Jo looks better today, her smile is straighter and she is sitting straighter. She had a good night's sleep, possibly aided by the herbal pillow I bought her. Certainly she is suffering less neuropathic pain as evidenced by the fact that she did not take her Gabapentin last night again and her left leg was not in pain in the morning, a trend that has remained constant since the cranioplasty. She also went all day without taking any Paracetamol, another increasing trend since the cranioplasty.

Swings and roundabouts

Jo had a good session with the collaborative care girls, transferring herself from bed to commode three times. Her left foot is even more swollen than yesterday though, which is confusing. On the one hand she seems to be making progress, on the other hand various symptoms which had long disappeared, or abated post-cranioplasty, have returned. Hopefully it is just the brain sorting things out and not after-effects of the fall.

First faltering steps

We had a very emotional day today. We went to CICC for physiotherapy at midday. On the way Jo asked me to stay for the session as her confidence was at the same low level it had been six months ago.

The session began with the physiotherapist demonstrating the standing frame, a truly horrendous wooden contraption with heavy leather straps that resembles nothing so much as a medieval stocks. Once strapped into this the idea was that it supported one standing and thus counteracted the effect of sitting shortening the muscles. I have to say that Jo and I were neither convinced of the efficacy of this, nor were we enthusiastic about using it.

After freeing Jo from the machine's confines and almost as an afterthought, the physiotherapist decided to try Jo in the walking frame, having last seen Jo's performance in this in December, when Jo was under another physiotherapist. At that time Jo was just beginning to transfer her weight onto her left leg and the walking consisted of her dragging that foot along.

To my amazement and Jo's obvious but painful pleasure, Jo was able transfer her weight onto her left leg and step reasonably confidently forward. Even more amazingly she was able to lift her left leg and move it forward, the latter mostly with the physiotherapist’s assistance but twice on her own.

This was performed for a full length of the gym and then repeated for another length. Jo was overcome with emotion at being able to accomplish so much and so was I. So overjoyed was she, she suggested we visit Waitrose for lunch, in some small celebration of these first faltering steps.

Things are getting worse

Jo's physiotherapy session was not totally successful today. She is still not very confident standing. I am still fearful that the fall has had a deleterious effect neurologically as we have seen the return of neglect since then, accompanied by increasing stiffness and heaviness in the left arm and leg. The swelling I had noted going down post-operation has returned as well.

Things are getting better

Jo's head wound is healing very well and the dip on her right temple is less pronounced as the swelling has gone down in the surrounding tissue. Her neglect, which has returned somewhat since the cranioplasty and fall, seems to be abating.

New carers lift Jo’s spirits

Jo started the day in much better spirits, obviously occasioned by the impending arrival of the new carers. Luckily they met expectations and have proven themselves much more engaged than the previous agency.

I phoned the neurosurgeon, who confirmed I was right to call him but also said the nausea and temporary increase in neglect were to be expected and only if the nausea increased and was accompanied by vomiting should I contact him before our planned visit on the 1^st of April.

The District nurse came and removed the dressing from Jo's head wound. It is scabbed over so no need to dress it. Jo's temple seems to be indented more than is natural but perhaps it appears so because of all the swelling around it.

The physiotherapist came and reset Jo's goals; to stand with the assistance of one carer and to transfer herself to the commode from the bed or wheelchair. Jo is to spend up to four hours a day in the wheelchair. Obviously transferring onto the commode involves being able to pull knickers down and up again, the biggest challenge with one hand.

Things are getting worse, not better

Jo got up at lunchtime today and we went to Waitrose for lunch and some shopping. Her stands are very wobbly and there is a return of hemispatial neglect, with Jo failing to see her mobile phone just to the left of centre. She said it was going in and out of her field of vision. In Waitrose she was leaning to the right and her head was constantly turned to the right. She said she was aware she was doing this, which is new, but she hasn't done this for some time.

Getting in Jo raised her left leg the highest she has ever done but cried out in pain. Similarly, when sitting in her chair at home later, she drew her left leg back, something she hasn't done before but once again crying out in pain.

I fear the worst

Jo spent the last three days in bed complaining of headaches and nausea. I am increasingly concerned that the fall has had a deleterious effect on her cranioplasty. Hopefully I am wrong.

Complete loss of trust in the carers

Jo is still feeling very fragile, the fall has obviously had a deleterious effect on her confidence and she requires constant reassurance and is very afraid of falling whenever she does attempt a stand. She is better when I am there but very obviously has no confidence in the carers at all, which is not surprising.

The district nurse came and removed the staples this morning. The wound seems to be healing nicely but there is a lot of bruising and damage caused by the fall. The leg wounds were redressed as an alginate dressing had been applied, which has made Jo come out in a rash as she is allergic to seaweed.

Fear of falling

Jo seemed in slightly better spirits today but continues to be afraid of falling. Once again I noted that her left leg was not clenched with nerve pain in the morning. I was astonished to see one of the carers allowing Jo to transfer from the commode directly to the bed on her own, despite them not being authorised to do so. Jo herself was very unsure and only attempted the manoeuvre once I was in the room.

Shaken and bruised by the fall

Jo is obviously shaken by the fall yesterday and opted to stay in bed al day again. The physiotherapist came at 10:45 and said the bruising to her leg and arm prevented them from doing any physiotherapy today. Additionally the arm was tensed up with shock and more claw-like than it has ever been. Most of all they said Jo's confidence was visibly affected by the fall. I had noticed this earlier in the day. Jo had to stand to get on the commode and she managed it but she was obviously nervous and afraid of falling.

On the positive side she is moving the left leg far more than she ever did before and her leg was not clenched up in neuropathic pain in the morning. I have also noticed her neglect seems to be improving as Jo was able to tell that I was touching both legs at the same time.

The carers drop Jo!

At approximately 09:00 I heard a loud crash and upon going into Jo's bedroom saw Jo lying on the floor. The carer had attempted to transfer Jo from the commode to the bed using the rotunda on her own, contrary to the instructions in the care plan. I phoned the ambulance and they arrived at 09:18. They made sure all Jo's vital sign were OK and that she had not broken any bones before lifting her back on the bed.

She suffered bruising to her left thigh, knee and arm. The knee is particularly swollen and the arm gave her increasing pain throughout the day. Jo was badly shaken by the fall and unsurprisingly elected to stay in bed all day.

Later in the day the carers made their tea time call. They did their usual bare minimum and left. After they had left Jo urinated in the slipper and poured the urine on the floor as they had not ensured the female urinal was attached to the catheter, which they obviously had not changed all day. Health and Safety has clearly been breached and my confidence in them to deliver even the basic level of care is completely diminished.

Continuing improvement

Jo's stands were better today and she was able to push her leg back with a lot more ease when standing. She is also able to sit herself up in the chair, something I have never seen her do before. The cranioplasty is giving her some pain though and she went to bed early.

Immediate signs of improvement in neglect

Jo is making a good recovery from the operation but opted to stay in hospital for another 24 hours to build up her strength a little more as the operation being later had shortened her available recovery time.

Several people have commented on the fact that her mouth is drooping less on the left hand side. I have also observed that the swelling in her left arm and leg appears to have lessened significantly. The tactile neglect on the left side also seems to have diminished. Jo also has short term memory loss, perhaps this confusion is caused by other brain functions coming back?

A successful operation

Jo's cranioplasty was successful although later than the scheduled time of 13:30 as her heart rate was high at 156. They treated this with Tamazepam and tested her blood for electrolytes and performed an ECG to ensure there were no irregularities in her heart rhythm. She finally went to theatre at 18:00, returning from recovery at 20:30.

Increasing anxiety

Jo had an accident with her bowels this morning. She has been in control up until now so this may be anxiety about the operation manifesting itself.

The physiotherapist said Jo was distracted during therapy and asked that I take Jo to CICC tomorrow as she is less distracted in the gym.

Jo’s impending operation is preying on her mind

Jo had a good day although the impending operation is beginning to prey on her mind.

A fitting for a new splint

The physiotherapist and Occupational Therapist came around to fit Jo for a new splint today. I thought they would leave it but they took it away for further fitting.

Prior to that Jo had a good exercise session with ten good stands. The collaborative care girl said Jo was making good progress and that the cranioplasty should see further progress.

More movement of the arm

Jo had another good physiotherapy session today, with several good stands and more movement of her arm. The District Nurse came and took a swab of the leg burn.

Impatience leads to a tumble

Jo went to the hairdressers at CICC today. On our return she was rather impatient about getting out of the car, putting her left leg out while I was still getting the wheelchair out of the boot. As a consequence she tipped on the cucumber board and tipped herself out of the car, landing on the ground. I managed to right her by standing behind and helping her up by the armpits. Although it was a frightening experience it does demonstrate how far Jo has progressed as I would not have been able to get her in a standing position when she first came home, the left side being far too weak.

Jo’s burn is looking angry again

Jo continues to make steady progress and I am growing ever more confident for a full recovery. The District Nurse came and put new dressings on her leg burn and pressure sore. The former is looking quite angry after first appearing to get better so she has asked for a swab to be taken.

The first signs of movement in Jo’s arm

Jo had an interesting physiotherapy session today. The physiotherapist got her to move her arm, first from the shoulder, which I didn't know Jo could do, and then pushing forward against the physiotherapist and finally pulling back. The latter two Jo was really pleased about.

Transfer therapy

Another good day. As first noted by the physiotherapist last week, Jo's smile continues to be more even. We didn't get to do Jo's exercises but went on a visit to Waitrose so getting in and out of the car was Jo's physiotherapy for the day.