October 8 2014

Today we had a visit to Southampton General for a neuro outpatient appointment with Mr Duffill.  The appointment changed from 1615 to 1330 so that HC could transport her more easily.  When we got there Mr Duffill was running about an hour late becuase he had to go to do some emergency surgery.  This wouldn’t be a problem for most people but a) Helen has Type 1 diabetes and wasn’t on feed for the trip and b) should shouldn’t be in her chair for too long because of her sore bum.

Mr Duffill was pleased with her progress from a neurosurgery point of view.  The wound has healed well.  I saw her scans for the first time and it was really interesting!!

The picture below shows a brain with and without hydrocephalus.

December 2012 – The ventricles were enormous and the brain was bulging outwards.  This was because of the hydrocephalus.  A scan taken after the shunt was put in showed reduced size ventricles and also the position of the new shunt.

May 2013 – It seemed like there was nothing at the front of the head but an empty space. Because of the cranioplasty the brain has been pushed to the back of the skull due to the pressure on the remaining skin.  The picture below shows a CT of someone with a side cranioplasty.  Helen’s was a full frontal cranioplasty but I cannot find a picture of this!

July 2014 – after the shunt revision and cranioplasty, the ventricles are slightly enlarged and the is air between the brain and the titanium plate.  Her shunt was adjusted to reduce the CSF pressure.

August 2014 – the first scan shows the ventricles closing slightly and the air decreasing.  The second scan that the ventricles had got slightly bigger but the air had decreased.

Today, Mr Duffill adjusted the shunt down again to decrease the pressure.  I expressed concerns that H has seemed more sleepy since the operation.  Her left eye has been droopy as well.  She has had a couple of small fits since July but nothing major.  Hopefully the change in pressure will improve her awakeness.  Time will tell.  He also said that she can have a head strap rather than a collar now.    It should be more comfortable for her.

October 1 2014

After starting my job on Monday, I have been on a training course for 2 days.  Both days we finished at about 3.30/4ish so I decided to take a sneaky trip down to see H. When I got there she was in bed, which is quite unusual at that time.  The senior nurse told me that her bum is sore and red so they are keeping her off it for a few days to avoid is breaking down and causing her more problems.

This is one of the big problems associated with incontinence (or continence problems), especially in women.  With men it is easier to control urine because they can wear a sheath-like continence aid called a Conveen.  Basically is almost like having a catheter without the actual invasive bit!!  Women do not have that luxury.  They do not have appendages that can have anything attached to.  The result is that they end up using pads or absorbent pants.  Many people (like Helen) have got good capacity in their bladder but haven’t got the ability to communicate that they need to pass urine, or wait until a convenient time.  What happens is that urine is released (just like us going to the toilet) and the person then sits with it in their pad right next to their skin.  I know that H is checked regularly but I also know that she can be dry one minute and soaked 5 minutes later.  With the best will in the world it isn’t possible to check every person pad every 5 minutes to see if they are wet or dirty.

The accumulation of urine and/or faeces in a damp moist environment can lead to excoriation, or reddening/blistering of the skin, like nappy rash.  In turn this can develop into sores .  These are not initially pressure sores as these are caused by pressure, although if not treated the skin can break down further and this can then develop into pressure sores.  The best treatment for a reddening bum is to take pressure off (I know it sounds weird but it’s true!), regular turning, barrier cream and letting the air get to it.  The picture below shows excoriated buttocks (NOT Helen’s!!).

I also gave the nursing staff details of Helen’s hospital appointment next week.  They have changed the time because it was rather late in the afternoon for them realistically.  I will go with her to see what Mr Duffill has to say about her scan.  Hopefully everything will be ok.  I need to ask him about her droopy left eye.

Life is short

Last week the youngest son of one of my best friends died. He was 21. Three and a half years ago he had an accident which resulted in him suffering a severe traumatic brain injury, just like H.  His mum and I met through an online support group for people with loved ones with disorders of consciousness. The paths that our children have taken during their lives have been so similar.  Even after their accidents they have followed similar paths. I have often turned to her for advice and reassurance about what is happening to H. Our professions are similar. Our outlooks are similar. We are a force to be reckoned with apparently. She is my partner in crime!!  

Last week, her boy was doing well, he was beginning to respond a little more, there were a few smiles. His mum captured some of it on her phone. Within 48 hours he was dead. He developed sepsis and eventually went into Intensive Care and all his organs shut down.  They are now waiting for coroner reports, possible inquests and are making funeral arrangements. 

It got me thinking. What would I do if this happened with H?  What would we do if she was to die?  Would she be buried or cremated? Where would her body or remains go?  These are discussions her father and I should have in the not to distant future. 

Life is very fragile. This has already been shown by the aftermath of the accident Helen had. It has been shown by people who have gone about their normal day and have suffered a catastrophic event that changed their life and the life of those around them.  It has been shown by this young man losing his life less than 24 hours after becoming ill.  

My latest tattoo says “Live for today as tomorrow is promised to no-one”. It’s very true. 

 

Meeting with the people who control the money

Today we had a meeting with the Clinical Commissioning Group (CCG).  These are the people who have ultimate control over where H will stay; they control the money and if they say they won’t pay for her to stay where she is then that’s it, we would have to look for somewhere else for her to live.  We have been immensely lucky that we haven’t yet had a formal review by the CCG in the year and three-quarters since H has been at Holy Cross.  They have asked for a couple of reviews from the hospital but haven’t been in to visit yet. 

H is still on a rehabilitation package which again is almost unheard of!!  The normal period allocated for rehab seems to be between three and six months.  H has been on rehab since January 2013.  Her current period takes rehab funding to January 2015, two years after her arrival at HC.  Personally I think it’s fair, she’s had a good period of rehab.  They extended it again because of her big operation in July.

At HC they do not differentiate between patients on rehab and those on Continuing Healthcare (CHC).  They receive the same treatment and therapies, it’s just that the money comes from a different pot.  Even though I know this, it is still worrying.  The person who came seemed impressed by the therapists who she spoke with.  She seemed happy that H’s complex medical needs are being met at HC and probably could not be met elsewhere.  It’s always a worry that she could end up in a general nursing home where they have no real in-depth knowledge of brain injuries, T1 diabetes, cranioplasties, fluctuating blood sugars, collagenous colitis, contractures, PEG feeding, splinting, shunts and numerous other issues that she has to deal with.  If by some miracle there was an equivalent residential home closer to Newbury that wanted young residents I would possibly think about moving her.  It’s about H, not us.

I hate being at the mercy of others but that’s the way it is now. 

August 27 2014

My friend has arrived at Holy Cross today with her boy!!  He looks terrified but will soon settle in.

Helen has had a hair cut!  Her hair is even more curly then before.  

The nurse in charge spoke about quiet time for all residents to avoid over stimulation.  They propose individually tailored times.  Helen’s would probably be after morning care, after lunchtime and early evening after going to bed.  The proposal is that there will be no tv or interruptions.  I think it’s a great idea.

Helen is being trialled with a neck collar to stop her head going forward as she is developing a sore/mark on her chin from resting on her Swedish nose!  They have tried tipping her chair back, reclining the headrest and other methods.  They cannot use a headband yet because of her operation.

Her bloods came back – 83 in hospital, 86 when she came back, 93 from the test last week and another test was taken yesterday.  Hopefully they can avoid ferrous sulphate.

She had another fit on Monday lasting over 3 minutes.  She had buccal midazolam and then vomited! 

She went up to cooking on yesterday and was smiling at the lady running it.

I have taken one of her blouses to see if I can alter it because she has put on weight and it is cutting in!  I have taken in 2 duvet covers and pillow cases for her to make her room a bit more homely.

August 19 2014

On doctors round today we talked about flotrons (circulation boosters like people wear in hospital) because Helen’s feet and legs are always cold. When she was in Southampton this time, her feet were warm all the time.  They have agreed to try stockings first and see how that goes. I told Dr that I was really worried because of her diabetes and her young age that the slow circulation would be very detrimental to her feet! 

They are going to let her settle for about a month then start thinking about other things.  Judi says they will reassess her in a couple of weeks. 

Some of the other things they are considering working in on in the near future:

Trachy weaning

Cutting/grafting/transplanting her ankle tendons so that her foot drop can be corrected.

July 9 2014

There was a special visit today from Sophie, Countess of Wessex who was opening the new sensory room.  We all waited upstairs in the Activity Room while she had a tour of the hospital and the sensory room.  While we were waiting H was looking all around her, tracking people across the room.  She looked around her chair several times at someone waving at her.  I also noticed that she was holding her head up with no support.  This happened several times.  She also managed to lift her head up herself as well!!  The Countess talked to every person in the room.  She seems very nice.  There was a nice cake as well!

Had a bit of a weird time with one of the Sisters today.  She approached me saying that she had spoken to some of Helen’s friends and they told her that H was interested in reading the bible from cover to cover and learning more about Nazism!  I was taken aback by this as she has never been really interested in religion and would be more likely to use the pages for a roll-up filter than actually read it.  I expressed my concerns to the Clinical Director, who has promised to look into it.  She said that there had been concerns about someone who was maybe overstepping the mark a bit. 

What I love about HC is that I feel I can approach even the highest people with any concerns I have and that they deal with it promptly and efficiently.  Even if it’s something that is on my mind or something that I am thinking about for H to improve her life, they will consider it and weigh up whether it will be beneficial for her or not.

July 3 2014

Had loads of smiles when Rachael, James and I arrived.  We went upstairs with Big Grampy for a cuppa.  She followed us with her eyes when we were talking and appeared to be following the conversation.  We went down to the sensory garden on the way back to her room.  We stopped and played with the music tubes.  I held her hand and banged them.  She smiled at this.  I asked her to close her eyes tightly if she wanted to bang some more.  I asked 3 times and then she closed her eyes slowly and deliberately.  So we banged some more!!  I did this twice more and Rachael got a video of it.  It’s very exciting!!

This is similar to the glockenspiel that’s in the HC sensory garden.  I can managed to play Twinkle Twinkle on it but nothing more.

March 7 2014

Helen asleep when I got here. She’s quite sleepy again today. She was watching Harry Potter when I got here. I out Scrubs on when it finished and she woke up. 

One of the nurses came to do her BM.  She really doesn’t like doing them on H so she asked if I would do it.  I said to Helen that V was a big baby not wanting to do it.  H started smiling!! A massive smile that lasted for ages. V and I were wetting ourselves laughing at the timing of it – don’t know whether it was deliberate or not but the timing was perfect. 

The physio came to see me. They are going some research on whether physio is beneficial on students with brain injury. He wants to use H as one of the cases, along with others. He will be using figures and measurements from the last 6 months and the next 6 months to show improvements or not. I agreed and he will get me a consent form to sign. 

He says that H is doing well with physio. Both sides of her body are the same, neither is stronger than the other. The only difference is the foot drop in her left foot.  He doesn’t think that she needs any more Botox for the time being. 

Botox is used to treat the muscles that cause spasticity.  In a traumatic brain injury this spasticity, or increased tone, is due to damage to the brain which causes over stimulation of nerves and therefore contraction of muscles in the body.  

The information below comes from the Royal College of Physicians – Treatment of Spasticity in Adults

Why does treating spasticity matter?

Spasticity is not always harmful. Patients with a combination of muscle weakness and spasticity may rely on the increased tone to maintain their posture and aid standing or walking. There are patients with spasticity who need little or no treatment. However, muscle tone may change over time and therefore requires repeated assessment and management.

For some patients spasticity can be painful, distressing, and a potentially costly cause of disability. Secondary complications arising from spasticity include impaired movement, hygiene, self-care, poor self-esteem, body image, pain and pressure ulcers (see Table 3). These may be distressing for the patient and difficult to manage for involved carers and health professionals. In some cases they may interfere with rehabilitation and can increase the cost of this and longer-term care over time. For example the direct cost of healing a pressure ulcer (Grade 4) has been estimated at £10,551 over the period of healing (Bennett et al 2004). Successful treatment can improve physical functioning and can also prevent secondary complications (Boyd et al 2000). 

February 18 2014

Met with a couple of my friends who have a child in a similar position to H. They want to look around because they want to move him from where he currently is.  They met several of the staff.  Judi showed them the magic carpet, etc.  

Her tv mount has finally gone up!! 

I gave staff a copy of her hospital letter so they know what is going on with her referral to Southampton.

Helen seems quite sleepy today but she watched Scrubs intently later in the day.  She made a noise like “hum hum hum” – a proper sound, not just noise when yawning.  She was moving her mouth at the same time.  It’s the first time I’ve heard a proper noise coming out!