Hospital stint continues - 5th October

PA I arrived at 8am and took over from Z.  At 9am Rachael was hoisted and given a freshen up.  Unfortunately when she was put back in her chair her pad was causing a burning sensation on her bottom.  Nurse P and I then re-hoisted Rachael to correct this problem.

Rachael’s arm where her PICC line is sited has become sore.  The IV nurse took a look and decided there was no sign of infection.  She suggested the problem was being caused by irritation from the line within the vein itself.  She recommended warm compresses be applied around the IV site to ease the pain.  She said she would ask the nurses to organise this (10.30am) As of 14.40 no compresses have arrived.  At 15.30 the staff nurse, after chasing her up arrived with warm compressers in the form of pieces of gauze soaked in hot water.  These were totally unsuitable for purpose.  Rachael’s arm has continued to be sore and is gradually worsening.  The IV nurse needs to be contacted tomorrow to try to resolve this problem.

3rd October

E arrived at 8.30am. S gave a list of instructions which must be passed on.  Dr A is to visit Rachael to discuss installing a PICC line. S needs to be advised when the appointment is made for.  The nurses have requested we use the fold up bed at night.  Blankets can be found on the bed.  A nurse must be called for extra pain medication, cleaning and hoisting, water, if the suction machine needs emptying, alarms on the machines go off.  Also the nurses are weighing Rachael’s urine so please advise a nurse when you have emptied her leg bag.

29th September Cough assist stopped working

M arrived at 8am.  Rachael had had breathing difficulties during the night.  Her cough assist machine isn’t working.  D and R arrived.  W hospital could not be contacted til tomorrow.  The nurse sent for a physiotherapist to come and assess Rachael’s breathing and to use the cough assist machine.  Dr B came to visit Rachael.  He listened to her chest, which was ok.  He also checked her bloods.  Rachael requested a hoist so that she could be cleaned.  She had to wait for over an hour for this.  The physiotherapist came and assessed Rachael.  She used the cough assist and suction machine.  She arranged to come back this afternoon before 4.30pm and then send a night physio at 10.30pm .  Rachael was getting very panicky and upset due to lack of breath.  The suction machine was used repeatedly

28th September - still in hospital..

I arrived at 8am.  The nurse arrived with a full set of Rachael’s drugs that Rachael had already had.  These were sent back.  Rachael had a Phosphate tablet as her salt levels were low.  The site of the driver entry on Rachael’s arm is sore and twitchy.  Rachael asked the nurse to take a look and also get a bag from the pharmacy for the driver machine.  Nurse N moved the driver needle further back on Rachael’s arm.  Rachael refused the suggestion that the needle be placed on her left arm or stomach.

At 10.30am Rachael suffered a bladder spasm which required hoisting.  Unfortunately it was staff break time so Rachael decided to wait rather than hoist with only one nurse.  Rachael has been struggling with her breathing.  Nurse N was asked to chase the Palliative care team at W hospital but nobody available until the morning.  Nurse N also forgot to order a driver bag.  She said she will do this in the morning.  Rachael’s new driver site has become sore so it was moved to her right thigh.  This needs to be monitored.

27th September - hospital stint continues - visit from Dr E

27^th September

On morning rounds the doctor said Rachael’s nutrition needs building up so she should continue with the feed through the PICC for at least a week, whilst a long term solution is found to Rachael’s stomach problem.  The doctor was unsure as to whether Rachael would ever be able to find feed via the rig again.  Unit a solution is found Rachael will remain on a drip with additional vitamins.  Rachael is tolerating the PICC feed.  The palliative care nurse came to see how Rachael’s pain is today.  She was happy that Oxycodeine was working better than Oramorph but thought Rachael would benefit from a higher dosage via syringe driver and stressed she is still happy for Rachael to have an extra dose whenever needed.  Rachael explained that she is in pain after meds are given through the rig.  The nurse promised to look into this to see if there is any other way drugs can be given.  Rachael asked if she could ring Wythenshawe re cough assist machine.  Rachael said the pressure nees readjusting.  After discussing Rachael’s bowel movements, the nurse thought Rachael may have a blockage, so she has arranged for a rectal examination next time Rachael was hoisted.  Rachael has been biting inside of her mouth.  The nurse recommended bonjela.

After reading Rachael’s notes Dr E had a look at Rachael’s drugs list to see if he could reduce the amount going through the rig.  Dr E decided to stop the Riluzole, ferrous fumerate and Domperidone for the time being.  He also asked Rachael about end of life matters.  Rachael got upset and asked to speak to him on Monday or Tuesday.  Rachael needed hoisting so Dr E volunteered to do the rectal examination whilst she was in the air.  He said he couldn’t feel anything so he was happy that Rachael didn’t need to take suppositories/ laxatives over the weekend.

Pain relief - 26th September

At the morning visit, the doctor decided Rachael needed some vitamins before they start trying to feed down the new PICC line.  The doctor said she would need to take these for the next four days via a drip.  The macmillan nurses visited to discuss pain management.  Rachael explained that Oramorph via rig wasn’t helping with the pain, it caused more pain forcing Rachael to sleep through it.  The doctor decided to try Rachael on Oxycodeine; to be given as a background pain killer through a syringe driver over a 24 hour period.  Extra pain relief can be give an Rachael’s request through the butterfly needle in Rachael’s leg.  Macmillan nurse said they are in hospital all week if Rachael needs anymore questions answering.  Rachael had some bloods taken through the PICC. Syringe driver set to 0.38ml/hr extra pain relief Oxycodeine 1.25 mg

25th September - hospital stint continues..PICC line procedure

Rachael was taken down to x ray via porter.  After a 30 minute wait, Rachael entered the x ray room.  After giving lengthy directions on how Rachael must not be lay down under the X ray due to respiratory problems a nurse emerged to help hoist.  Once pillows had been stacked on table, Rachael was hoisted.  The pillows were inadequate and after a few minutes of trying to support Rachael’s head, Rachael asked to go back in the chair.  The radiographer explained that once the Barium was in Rachael’s body it could take upwards of 2 hours to complete the procedure, with x rays being taken every 20 minutes.  Rachael protested that A&E had said she could be scanned in the chair.  The radiographer explained this would never have been possible.  Rachael felt she would be unable to last for 2 hours, being hoisted onto table of back into the chair.  Rachael was very distressed upon getting back to the room, a nurse came to scan Rachael’s arm to see if a Picc Line could be put in.  Rachael had some difficulty in putting her arm out to a right angle.  The surgeon said a main PICC line would not be possible.  This distressed Rachael greatly.  After some thinking the surgeon once again scanned Rachael’s bicep and said he could possibly put in a peripheral line.  He enlisted the help of a student doctor to hold Rachael’s arm in place throughout the procedure.  He said he would be back later after an x ray to see if it had been successful.  The X ray team came with a mobile machine.  Rachael was hoisted into bed of an x ray taken.  The surgeon came back almost immediately saying the Picc line was in her jugular vein, not her chest as he had wanted, meaning he would need to pull some out.  He did stress the line would still be usable despite it now only being a mid line.  Procedure was carried out with PA holding Rachael’s arm in place.  Rachael was shattered after the days hoisting and was up and in pain every 15 – 45 minutes throughout the night.