Helen's Hope

Helen's Hope: April 2013

Tuesday 30 April 2013

April 30 2013

Got a call from the sister asking whether I would be able to go Holy Cross and get some more feed.  Helen is being discharged tomorrow.  She could be discharged today but waiting on some blood results.  They would rather arrange for her to be discharged tomorrow electively as opposed to having to arrange "emergency" transport later today.

The dietician reviewed feed.  Overnight she will have feed from the hospital rather than her normal one.  I asked whether it is the best feed for her bowels and diabetes.  Her usual feed contains 11 grams fibre.  Increasing the fibre may improve her bowels, it may not.  The fibre may slow down the transit time through the bowel, meaning more stable blood sugars.  Helen should have another dietician review when back at Holy Cross.  It may be possible to go onto a basal/bolus regime.  It will be trial and error to see what works.

The diabetes nurse increased her to 86 units of Lantus from yesterday.  I expressed concern about her not having a community diabetes nurse.  The hospital will call Holy Cross to let them know that they can call any time.  The diabetes specialist nurse will write to Holy Cross with rules for testing ketones.  I told her that I had left them Helen's Optimum Xceed monitor with ketone test strips.  They need to use it for her.

M3 and Insulatard were discussed instead of Lantus.  This may be a possibility.  May be possible to do a basal/bolus regime in the future. Helen has been having Novarapid instead of Actrapid while in hospital.

Helen was sweaty today.  She has a rattly chest/throat. Needed suctioning once or twice while I was there.



Thursday 25 April 2013

April 25 2013

Another trip down the M3 to Guidlford today.

Helen is looking better.  She has a temperature of 37.7.  They have started her on antibiotics for sepsis.  It is probably a urine infection.  Her blood sugars are erratic still. The diabetes team have been to see her.  They are happy with her on the sliding scale and she needs to stay in for a few more days.  She seems quite happy on the feed they are giving her.

Wednesday 24 April 2013

April 24 2013

Got a phone call from Holy Cross today saying that Helen had been taken into hospital.  She was quite unwell with a high temperature, high blood sugar and ketones.

What are ketones?

She was taken to A&E at Royal Surrey County Hospital by ambulance.  They immediately put her on a drip and started treating her for hyperglycaemia, sepsis and dehydration.  She had 3 litres of fluid in 3 hours and then was transferred to a ward.  They also started her on the insulin sliding scale.  I stayed with her as long as I could, not leaving until after midnight when I was sure that she was in safe hands with people who understood her conditions.  She hadn't had any feed on yet that day and of course had her insulin on board so her blood sugar plummeted to 2.9 at about 11 at night!!


Friday 19 April 2013

April 19 2013

Call from the Sister.  She has spoken to someone from Royal Surrey Hospital in Guildford. There is no diabetes nurse allocated to Haslemere.  They are recruiting a couple more soon. She then spoke with one of the diabetes doctors and told him about Helen.  They advised her to increase the Lantus by 2 units and see how blood sugars are affected.  She is on stat doses of Actrapid and has needed doses morning, lunchtime and evening.  Her blood sugars are high, between 15-20+.  I said to Mantumbi that this couldn't continue.

I have arranged to speak with the diabetes nurse at Basingstoke on Wednesday and will let them know what they say.

Wednesday 17 April 2013

April 17 2013

Visit with Dad & Mum.  Helen is in bed.  She sat in the wheelchair for a couple of hours in the afternoon.  Her time sitting out is limited at the moment because of broken skin on her bottom.

I spoke with the charge nurse about accessing a diabetes nurse.  There is no diabetes nurse available in Guildford.  I may need to speak with Basingstoke diabetes nurses and get their advice as they know Helen.

Scan results are back and were discussed in ward round yesterday but Daniel didn't know what the results were.  X-ray results not back yet.

I need to bring the letter about the retina screening in.  Her annual diabetes bloods will be taken for thyroid, etc.  

Tuesday 9 April 2013

April 9 2013

PCT/MDT meeting today.  

The PCT didn't turn up.  The team at Holy Cross didn't expect them to.  Her father and I were there, along with Judi, Rasheed, Daniel and Dr McLusky.

Items for discussion and the answers are:

Timescale for trachy - gradually weaning still.  Tolerating uncuffed.
CT results - shunt working ok? Results not back yet.
Chest X-ray results. Results not back yet.
Bone flap? Been chased? In or plate? Dr McLusky to chase John Radcliffe.  Bone won't go back in until Helen is infection free.
Vision testing - prob won't be done.  Eye gaze will track eye movements.  Eye test will only show that optic nerve is intact, not how she is interpreting.  Judi will continue with Eyegaze.
Retina test? - inform Holy Cross when her last one was done.  They can then arrange an annual retina screen.
Annual bloods for diabetes checks? - Dr McLusky says they have prob been done but will check.
Botox? - will be done after infections have cleared.
Splints - physio's will look at foot splints.  I told them I was concerned about the toes on her left foot curling under.
Palm protectors - physios will look into getting something or will look at her current splint care plan to see how long she can wear the soft splints.
Hydro won't be started until Helen is infection free.
She has been on the leg cycle.  Sits in wheelchair and cycle moves legs.  It is active and passive.
Still has diarrhoea.  Skin is excoriated because of diarrhoea.  Sitting out has been reduced to 2/3 hours.
New wheelchair has arrived, with tray.  Will be set up for her on 10/4/13

Drugs she is currently on are -
Loperamide - bowels
Baclofen - spasticity
Rinitadin - ulcer prevention because of PEG feed
Paracetamol - for temperature
Hyoscin patch - queried re secretions.  They will monitor.
Lantus insulin - diabetic team in Basingstoke suggest M3 or Insulatard
Sodium chloride nebuliser

New goals were discussed but these are just extensions of the current ones really.

Sitting out
Pressure area care, infections, 
Range of movement
Trachy weaning

She has £89 in hospital account.  Chiropodist is £18, visited end March and hairdresser is £12, visited beginning of March.

Helen vomited again yesterday but only a small amount.

Thursday 4 April 2013

April 4 2013

Helen was in her wheelchair.  She is quite awake but is quite drooly.  She has had a shower - her hair smells and looks lovely!!  I brought lots of shower gels and body creams for her.  I cut her nails today and removed nail varnish because she was rubbing it off.  Her feet are quite cold.  

Helen went to Haslemere hospital yesterday for an x-ray.  The nurse accompanying her queried whether she was getting travel sick because she looked distressed and was drooling a lot!!  She has no balance that she can control herself and this can cause travel sickness.  

I phoned wheelchair services 3/4/13 and they are visiting Helen at Holy Cross not our house.  They are delivering her new wheelchair.  Judi has confirmed this.

Helen has been in the sensory room this morning on the Eye Gaze equipment.  Judi is still not sure about her vision. Her pupils react very slowly.  Her eyes still flick.  However she does sometimes become startled when someone comes into her view.

She did well on the Eye Gaze.  Initially she was looking everywhere but by the end so the session she settled more centrally.  Judi is hopeful that it will be beneficial to her.

Mantumbi says that Helen swab of great toe shows staphaureus infection (mild). It should be sensitive to erythromycin and flucloxacillin.  Erythromycin (morning and night) has been stopped.  Helen has been on it for acne and she still has the infection therefore it is ineffective.  She will be started on flucloxacillin.  Still need to find out from Dr Stiff which antibiotic was more effective for Helen's ear infections.