Dehydrated

13^th October (Sunday)

Two nurses hoisted Rachael to change her pad and clean her with I's help.  Rachael reported that she felt dehydrated at 4.30pm.  The nurse made a note of this and said that she will also inform the doctor.  The nurse came back to say that a doctor will be coming to see Rachael re being dehydrated.  He may need to put a IV line in to hydrate her.  Rachael wants to make sure that the TPN team are made aware of what happens.  The H8 nurse came at 6.30 to change Rachael’s feed.  She will make sure that something is done about Rachael’s dehydration.  Rachael’s syringe driver was changed at 6.50.

Blood thinners..

12^th October (Saturday)

Rachael finally received her Citalopram liquid and took 0.25ml.  The nurse was asked to check if it was ok to take the Citalopram at the same time as Lorazepam and whether there would be any interaction between the two drugs.  She was told that it was fine to use both and that there should be no side affects.  Rachael has been having problems with her catheter again.  Nurse L gave Rachael a bladder wash but it doesn’t appear to have improved Rachael’s discomfort.

Nurse L also informed Rachael that, as her blood base line readings are as they should be if she were at home she no longer is being prescribed “Blood thinners”. Rachael however thought Dr A had said that she should continue with the medication.  This will obviously need clarifying with Dr A.

11th October - hospital stay continues - preparations for going home...

DM rang saying she works in partnership with DF.  DM said she will ring and inform the hospital of what can be put on Rachael’s nose to ease the pressure when she is using the Bipap.  She also said she would get a doctor to have a look in Rachael’s mouth as she believes Rachael may have mouth thrush.

E arrived at 8.15am.  Nurse L came in to discuss Citalopram dosage.  L said she would get the pharmacist to visit this afternoon to answer any queries that Rachael had to ask.  The Doctor saw Rachael on the ward rounds at 1.15pm.  He looked in Rachael’s mouth but could not see any abnormality.  He did point out Rachael’s lips were a bit chapped but stressed this could be remedied with lip balm.  Rachael explained how much her shoulder was hurting her.  Rachael asked if it was possible to have an injection to dull the pain in her shoulder.  The doctor said he would look into it.  Rachael then asked when she could go home.  The doctor said Rachael needed to wait 4 -5 days whilst everything was readied for her to go home.  Rachael got very upset and said she wanted to spend as much time at home with her daughter as possible.  The doctor said he would double check with Dr A.

J, nurse came to take blood from Rachael’s Picc Line.  Rachael stressed that H8 have been adamant about being the only department to deal with the line to prevent infection and clotting.  J said she would have to get somebody to take blood via normal methods.

Dr S, Palliative Care Team visited Rachael to see how she was doing.  Rachael initially discussed how painful her shoulder was.  Her PA asked about injections to numb the pain directly at the site.  Dr S said this was a very difficult procedure and had to be handled by the pain team.  She stressed it would not be impossible for Rachael, just very difficult to numb the right nerve.  Dr S received a phone call from Dr A.  When Dr S returned, Rachael told her that she had been prescribed Citalopram to try and combat her emotional ability.  Rachael also explained that the oxycodone seemed to be reducing the pain in her shoulder, when positioning of a physio hadn’t.  Dr S then explained what Dr A had told her.  He had said that Rachael needs to stay in hospital a few more days so they can see if Rachael tolerates feed and the rate of feed through the PICC line.  He said they need to arrange delivery of a fridge to Rachael’s home, have the correct feed made up and organise when BUPA nurses will be calling.  Rachael was less upset once she knew what needed to be done to get her home.   She asked DR S to inform all the nurses that the PICC line must only be dealt with from people from ward H8.  She said that if Rachael ever gets frustrated or needs someone to talk to ring her on her hospital extension at anytime.  At 3pm the pharmacist visited to discuss the Citalopram.  Rachael explained that she was concerned about the imprecise measurements given by the dropper.  The pharmacist said she would look into whether tablets could be crushed and dissolved.  At 3.30 pm a student doctor came and asked to take Rachael’s bloods.  He looked at the mark on the back of Rachael’s hand and asked if people struggle to take blood from her.  She said the mark was from a canulla and requested blood be taken from the back of the wrist.  He said he would get a nurse to come back.

D, nurse came in to stop machine from beeping.  PA stressed it must only be touched by H8.  D said he will continue feed by another 50 ml, meaning Rachael had had an extra 150ml today.  He said H8 will be up shortly to change bag over.  Pharmacist came back to see if Rachael would feel better about mixing drops with water.  Rachael said she would be happier if she could get a specific volume so the measures are constant.  The pharmacist said she would measure out the 4 drops and get a specific volume.  A few moments later the pharmacist expressed difficulty getting a consistent drop of Citaloprom.  She said she would discuss with colleagues and get back to Racahel with a definite action plan.

The pharmacist rang at 4.45 to say that Rachael’s prescription of 10mg actually equates to 0.25ml.  She said she would try and speak to Dr E over the weekend about upping Rachael’s dose to 2.0mg/0.5ml as they definitely have a syringe to measure that amount.  She also advised Rachael to try the 0.25l in the morning mixed with water and flushed.  Rachael said she would try this.

K from Ward H8 came at 5.10pm to change Rachael’s TPN.  She said the feed would be on over the next 24 hour period and stressed a nurse from her department would change the feed over at roughly the same time everyday.

At 6.00pm Citalopram tablets arrived from the pharmacy.  Rachael spoke to the nurse and said she will wait for drops as she now has a volume o.25ml.  The nurse said she would speak to pharmacy and get back to her in the morning.  This can be administered using a 2.5ml enteral syringe.

PICC Line procedure was a success..

10^th October

Nurse came to take bloods at 11.30 wanted blood from right arm so results would be correct.  Rachael wasn’t happy about this so nurse went to speak to doctor and decided they would just take them from the PICC line.  S arrived to come down with E and Rachael to have the Picc line.  Everything went smoothly apart from the fact that they couldn’t x-ray Rachael in her chair.  She had to go in the bed but was kept elevated as much as possible.  Rachael’s arm is quite sore but the actual Picc line is fine.  We have been advised not to touch the Picc line and to leave it to the professionals.  Brother and B visited, so put a smile on Rachael’s face.   When giving Rachael her bedtime drugs the rig kept getting jammed – only solution at the time was to force back then try again.  This was successful! Citalopram has been prescribed to start on 11^th October says 4 drops on bottle but nurse advised 10 ml.  Double checked and on their system it says pills so as liquid has been given, nurse advised wait for later on to get correct dosage.

Visit from Dr E - hospital rounds (9th October)

Doctor – morning rounds.  After telling and showing the doctor how swollen Rachael’s feet are he said there wasn’t a lot he could do,  adding that water tablets wouldn’t help as the swelling is due to positioning.  I explained that R had been put on water tablets and asked if they could be stopped – he was happy for that to happen.  The Doctor reassured us that Rachael is on the licat for a new PICC line tomorrow (10^th October).  We asked if he had had any joy finding out what time the procedure will be taking place – he said he had phoned but couldn’t give a time.  I asked if he would try and find out if it would be am or pm at least.  We explained that R was still having problems with R’s catheter as it doesn’t appear to be draining properly.  He said he would try and get someone from urology to come and have a look.  Just as they left R was in pain with her stomach.  I had tried to release some air with no joy so Rachael asked me to ask the DR to come and have a look, he had a fell and reassured us that it was just air after a few more attempts to release the air it worked.

Dr E and S H S (MND Nurse) came to see Rachael following S's chat with Rachael yesterday.  S ran over what her and Rachael had talked about yesterday (8^th October) with Dr E and S trying to find solutions.

Dr E wasn’t sure what to suggest regarding Rachael’s shoulder pain so said he would speak to physio.  He ran over what would happen tomorrow when Rachael has a new PICC line put in to make sure Rachael was happy.  We asked if he was able to find out what time it may happen but he had had no joy.

Both Dr E and S were keen to try and help Rachael control her emotions.  They strongly recommended trying an anti depressant drops.  Rachael has tried in the past and wasn’t keen but is willing to try again.

The physio from the MND clinic came to see R regarding her shoulder after taking a look she asked R if she would consider an injection in her shoulder to stop any pain.  R said yes so she said someone would do it soon, she also asked if Rachael would mind if she rang wheelchair people to see if there is a better back cushion that would have less pressure.  R was happy for her to do this.  I asked if she would have a look at Rachael’s swollen feet.  She confirmed that the swelling was water, she said the best thing we can do is massage the feet pushing the water up R’s leg.  This seemed to work using a little cream to stop any friction.

I have tried to phone D F re Rachael’s mask on bipap causing Rachael to have some cuts in Rachael’s mouth (inner lip) there was no answer so I will take her number and phone again tomorrow.

Cold feet..(8th October)

E arrived at 8am greeted by S who explained procedures.  R was hoisted at around 10am due to by passing fluid onto pad rather than through catheter.  E spoke to nurses P and A who have requested someone from urology department to come and look at the catheter to see why Rachael is bypassing.  Macmillan nurse came to see Rachael to check about discomfort.  Told her she was still having trouble with her left shoulder.  She advised she will speak to someone regarding physio.  3 doctors came in to explain about Rachael having an x ray and pick line done on Thrusday.  Rachael requested a specific time as she wants S to be present.  Doctors said would ring and find out.  Rachael was hoisted again, this time with much less messing about by E and P (nurse) at around 2pm as pad was wet again.  S the MND nurse spoke with R regarding 3 main topics – shoulder pain, emotions and the procedure with the pic line.  R got very emotional explaining she can’t stop crying.  Brother visited at 7.30pm R has been complaining about her cold feet especially her right one.  Brother spoke to the nurse to see if any other way of keeping feet warm.  They said to keep feet raised and they will inform doctor in the morning.  Also bipap starting to cut into R’s nose.  R requested to ask Z to speak to D F about it.  We then resorted to battery socks but due to swollen ankles socks were causing discomfort.  Sister saved the day by handing over the ones she was wearing when visited with B.  Before bed checked leg bag and was empty and Rachael was bursting for a week.  I rubbed tube and could feel it blocked.  Spoke to nurse who came to syringe the catheter but was no joy as it was blocked up so the nurse put an urgent call out to the doctor.  By then Rachael had already relieved herself.  Rachael was hoisted. Still no sign of doctor by 11.15pm.  Doctor came at 11.30pm and put a new catheter on.

6th October

M arrived at 8am.  Racahel was in pain with her shoulder, arm, bottom and neck.  She had pain relief throughout the day.  Rachael was hoisted and repositioned at 12pm.  Rachael asked again for the IV nurse to look at her PICC site as it is still aching.  The nurses were unable to contact her and will try again tomorrow.  S and E visited Rachael in the morning and R visited later on in the afternoon.

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.

PICC line discussion - 24th September

Rachael was moved to a room -  Rachael had a rough day.  Nurse T was very lovely and treated Rachael like a human being rather than talking down to her.  Rachael was asked if she wanted a procedure to enable her to be fed through a PICC line.  It also meant that they could administer drugs and take blood more easily.  Brother read out the information and signed on her behalf after Rachael had confirmed the Lydocaine would completely numb the arm and not cause pain.

Birthday - day release from hospital

Brothers arrived on Sunday morning and took Rachael home on her birthday.  Rachael said she would like visitors to her however could we stagger them.  Rachael was met by Z and M who were able to give Rachael a shower which was something she really wanted after not being able to have one in the hospital.  My sister and her family arrived with AJ with gifts.  Later brother and Rachael’s mum and dad arrived where happy birthday was sang with a carrot cake made by AJ.  At 5pm Rachael felt she needed her drip so brother D drove Rachael back to the hospital with B followed by M.  Rachael got to the ward at 6.30pm and had to wait nearly an hour for her drip to be put on.  At 8pm S arrived but the suction machine had lost a knob on the side.  During the night the nurses complained at S as Rachael was in a female ward.  S told them that Rachael needed a room and that he needs to be there.  During the day Rachael saw a specialist in Gastro-Entereology who said that they wanted to carry out a barium test.  During the day the ward manager complained at S again that he was sat on the bed and that he was in a female ward.  S arrived at 7pm and spoke to the nurses also and told them there were 3 options: move Rachael to a room, stop complaining at S and put up with it or Rachael would have to leave the hospital.  Also S had told the ward manager that Rachael needed to be cleaned and change of her pad.  Rachael was waiting over 30 minutes  - S complained to the nurse.  Dr E visited.

Hospital stint..

20^th September

Rachael is once again not tolerating drugs, water or feed.  She is in absolute agony and seems to be producing huge amounts of yellow bile which is leaking from the rig when left open.  When we go to syringe air from the rig to try and minimise Rachael’s pain, it is pulling yellow bile out into the syringe.  The thought of having a feed is causing Rachael distress.  She simply cannot tolerate another bolus feed today.  Even Oramorph is not helping with the pain.  C left a message with dietician to call back urgently to try and help remedy the situation.

N rang re: message left and asked for specifics of Rachael’s current condition.  After running through a list of questions, N said that it sounds like Rachael is suffering from either chronic constipation or gastric reflux.  N said to get Rachael to see a doctor so they can review the situation.  N said she would ring back on Monday to see how Rachael got on over the weekend.

Spoke to Dr O who asked how Rachael was.  Explained Rachael was in constant agony today, with the pain peaking when anything is put through the rig.  Explained Rachael was also losing a lot of yellow bile through rig when its open.  Dr O said she could come and assess Rachael when surgery is finished, at around 6.30/7.00pm.  Dr O did say that she thought Rachael needed to go to hospital to be assessed.

Brother got to Rachael’s for 5.30pm.  Rachael was in a lot of pain in her stomach.  Dr O (GP) came at 6.30pm and examined Rachael.  Dr O said that Rachael was particularly sore on the stomach.  Dr explained that she could treat Rachael with other drugs however as this hasn’t worked before she recommended going to hospital.  Rachael said she hates the idea but she can’t go on like she has been.  Dr gave Rachael the option of a local hospital or SR.  Rachael chose SR.  Rachael, S and E arrived at the hospital at 8pm.  Rachael was seen by triage and her blood pressure, pulse and temperature were taken.  We were then taken to a room in Majors.  Rachael had blood taken from her although the first attempt made her vein swell and possibly bruise.  Temperature, pulse and blood pressure were taken again.  We were then moved on to the Emergency Assessment Unit room 20.  We were asked to put Rachael in a bed and they were told no as she can’t go into the bed as it affects her respiratory system.  Rachael needed to change her pad so we asked for the hoist which they brought but didn’t know how to use it.  3 nurses lifted Rachael into the bed which she was fine with for a few minutes.  The nurses with E supervising changed Rachael’s clothes, pad and dressed a pressure sore on her bottom.  She was then lifted into the chair.  S and E enjoyed a cold McDonalds meal.  At 5 am Rachael woke in pain and asked for pain relief.  The nurse told S and R they were giving her 2.5 ml or 5 of another measurement.  Rachael felt woosey and was unable to communicate.  Rachael then slept.  At 6am Rachael complained of gas in her stomach which was syringed.  At 6.45 R arrived and took E home.  At 8.00 am a new nurse introduced herself and carer arrived.

The new nurse informed us Rachael had been given 5 ml of Oramorph not 2.5 ml as they were told.  S told the nurse that Rachael can’t communicate if she is given more than 2.5 ml.  The nurse informed Rachael that she would need to go on a trolley for the x ray.  She said that it would be 5 – 10 minutes.  Rachael said that she would be fine with that.  At 8.45am I gave Rachael her morning drugs.  At 9.10am Rachael was transferred to a trolley and taken through to X Ray.  It was very traumatic for Rachael especially when they tried to lie her back.  Eventually they decided to X ray Rachael sitting up which worked.  Once back in the room the nurses and I washed Rachael and then transferred her back to her chair.  The hoist was used to lift Rachael to change her pad and straighten her blanket.  Rachael was transferred to ward L2 at 10.30.  She was placed on a main ward with 7 beds.  Rachael had 4 loose bowel movements throughout the day and night.  She was in pain through hoisting on all but the last hoist.

Rachael saw a doctor at 6pm (approx.) and after discussing her options with him she decided to go with his recommendation of staying the night and then going home in the morning so that she could spend her birthday at home.  This option  did involve Rachael returning to the ward Sunday evening so that she could be seen by a Gastro-Enterology specialist on the Monday morning.

As Rachael is currently suffering with an upset stomach the suggestion was made by J, the night nurse, that Rachael would maybe have to move to a side ward but this would require input from the Doctors.

Rachael has currently got a dressing on a bed sore on her bottom.  This area is very tender and requires ongoing care.  Rachael would like the District nurses to provide a daily drip for her as it vastly improved things for her.

Visit from GP (19th September)

A Doctor came to visit as R has been suffering from stomach pains and there’s a bright yellow fluid coming out of her rig.  The doctor was concerned about the pain that R was in and suggested a stay in hospital until the cause was found.  This was not an option so she took a swab to be tested and altered a few drugs.  R thinks it is maybe due to the latest new drug Erythomycin so she said to stop taking that and to start taking Domperedone again.  She also prescribed Ramilidine – this should help any acid.

17th September

A visited Rachael with a rep from Miller Care and a rep from The Chair Company.  They had brought a chair for Rachael to try.

After being hoisted into the chair, the chair was adjusted to make Rachael as comfy as possible and the rep took some measurements so that a chair could be made designed specifically for Rachael.

Alison then said she would put in an application to purchase the chair for Rachael and would inform her as soon as she had anything.