Claire emailed saying she had been in touch with a hospice doctor, who confirmed crushing drugs seemed to be effective,although there is no research available to support this. Claire also said she had passed my email address onto the Physiotherapist so suction machine training can be organised.
Tuesday, 25 October 2011
Monday, 24 October 2011
Dr G came upon Rachael queueing for a flu jab and pulled us into her office. Dr G administered the flu jab herself. In regard to drug query, Dr G confirmed Rachael should crush Riluzole and open the capsule of Pregabalin to flush through the rig. She also said she would prescribe Baclofen and Ferrograd in liquid form, which we should mix with water to ease the enteral administration. Dr G said she would get back to the Macmillan nurses about training on the suction machine.
Friday, 21 October 2011
Jo did cursory range of motion exercises, but because she found Rachael difficult to understand, she misinterpreted her. She did get the full length of time in the pool this week,but again, the lack of meaningful communication meant that the exercises were less effective.
Tuesday, 18 October 2011
Claire asked Rachael questions of a medical, social and emotional nature. Claire agreed to make enquiries into arranging training for the suction machine, not by the district nurses, but by the Physiotherapist or through GP surgery. Claire offered to refer Rachael to the Hospice for one day per week for a maximum of 13 weeks. She opted to hold it in abeyance until she needs it. Claire left leaflets explaining what Macmillan Nurses actually do.
Monday, 17 October 2011
Mark and Gary brought an extra control panel, headrest and spare wheelchair cushion. Mark said he was going to make adaptations to the prototype control panel and bring it when he next visits. He agreed to source a chest restraint and bring a different headrest for Rachael to try out, for greater neck support. He also left a Roho cushion and leaflet for additional products Rachael might like to buy for herself.
How to use extra control panel:
Remove panel from side of chair (unscrew and slide out)
Place in bracket at front of current control panel and tighten
RED: Power button
To hoist Rachael, remove extra panel and replace in holder at side of the chair.
DO NOT remove/unplug wires
How to use headrest:
Headrest is adjustable and Rachael will need this moving as required
DO NOT leave in one position
How to use Roho cushion:
When Rachael is out of the chair, push the green button at the front and "plump" the cushion
Put Rachael back in the chair and when she is comfortable, push in the red buttons.
Check there is between half and one inch of air between the chair base and the bony area of Rachael at the back and sides.
If not enough air, use pump to inflate (2/3 pumps max), the valve twists to open and close
Rachael MUST be out of her chair when inflating cushion
Pump is left in the toolbox
Friday, 7 October 2011
Jo did cursory range of motion exercises, but because she found Rachael difficult to understand, she misinterpreted her. Jo thought Rachael was cold so got her out of the pool early. The lack of meaningful communication also meantthat the exercises she did do, were less effective than usual.
Thursday, 6 October 2011
Rachael advised me to inform Dr G of anything that may need to be on her medical file.I spoke to Dr G about Rachael's choking episode. Her response was to call 999 if it happens again and said she would prescribe drugs to thin her saliva. I also advised Dr G that Rachael's Mirena Coil no longer seemed to be working. Dr G advised her to start taking Norethisterone three times a day to prevent further bleeding. I also told Dr G about Rachael attending a rig tube change later today. Dr G said she would make a note.
Rachael attended an appointment for rig tube change. All went well. Rachael was aprehensive before the procedure, but the surgeon agreed to use extra gel as local anaesthetic and if necessary, could inject it around the stoma. There was some difficulty positioning Rachael on the trolley but eventually the tilma tube was replaced like for like. The surgeon commented that the stoma was in much better condition than when he last saw it. Rachael remnded him that the last change had been over 18 months previously, when the tube was accidentally ripped out. He said it sems to have healed well and is well-established. The surgeon agreed to email the xrays to the MND Specialist Nurse so she could forward them to Rachael as requested.
Saturday, 1 October 2011
bottom stretched and breaking feels as if I'm lying on cheese wire.
Carer took me to Liverpool to see my sister. drained and still bleeding heavily but worth it.
Passing glass sensation. Too hot and dehydrated position uncomfortable.
Bulk of the day spent writing about armchair anarchy and napping between watching politics and protest unfold. Still have stomach cramps.
Stomach ache - want to curl up and cry.
Great day with carer. Bought local produce & harvested from my garden for a delicious tea. Slight wobble breathing wise fixed by bipap.
Slept deeply in my chair in the evening now wide awake. Too hot and aching catheter hurts legs heavy neck and ankles sore.
Met a really cool lad who came round to talk gardens and permaculture. Played in the garden for hours.
Fell asleep in my chair at 6.30pm. woke briefly to get into hoist and bed. Bottom stretched and uncomfortable limbs pressing on bed.
Sleepy after a day of doing nothing. Touch of the runs earlier but then ate more than usual orally.
Cold sweating heart rate increased stomach in knots worrying irrationally about rig change tomorrow.
RIG replacement went much better than I had feared. Weed and brandy soothed the aching
Slept well with some aching. I have noticed increased teeth grinding for a few days and excessive chattering in slight cold.
not amazing hydrotherapy today but the water was excellent as ever. Delicious dahl for tea made by a friend.
Slept well after another light weed and brandy evening. All gone now but I woke feeling refreshed. A rare treat.
Lovely day spent with my daughter. Techie carer is investigating PLM suggestions for eyegaze.
Another good night's sleep although I am now aware of growing discomfort around my hips and buttocks.
Wednesday carer covered sick Sunday carer's shift quiet day
Woke twice with positional discomfort got to sleep fairly quickly afterwards feeling refreshed now though hips hurt.
going through cook books with carer for something that I can eat and daughter will enjoy. Having enormous fun. Skyped aussie sister.
Slept well eventually after another choking episode - not as severe as last time but scary enough.
pleasant day bar a couple of spluttering incidents, very tired. Regret I can't manage the deep conversation my daughter wants.
horrible stomach ache, hot and cold sweats and I've poohed the bed. Wretched.
Plasterers working upstairs solicitor visit at midday daughter's school forms to attend to. I'm exhausted.
generally uncomfortable with stomach ache and diarrhoea
coffee and a cleanup and I feel semi human. playing with computer with carer atm emoticon smile
Dentist was thankfully uneventful.
Another night with an upset stomach. Wondering if my feed is off?
Pottered about and discussed politics on line. Sorted some financial guidelines with daughter and napped on bipap.
After initial difficulty slept well needed turning a few times but no particular pain.
An interesting day ahead. Going with carer and his son for a ride on some diesel trains.
Brilliant day out. Felt a bit awkward spare part with carer's family but only a bit. Met a lovely couple chatted about beer.
Stomach ache again. Hot dehydrated and constipated. cold sweats.
Unable to effect BM but mobility of w/chair eased stomach pain. Went to pictures with niece. Lion King. She was captivated.
Stomach pain back with a vengeance I'm so tired. Feel nauseous.
17/10/2011. 11.32 pm
well enough considering that I have stomach ache and have spent hours talking to the wheelchair engineers.
woke choking eyes streaming carer communication difficult
I poohed! Stomach still grumbling but I'm greatly relieved.
Exhausted after Macmillan nurse initial visit Sticky mouth and throat causing me to gag.
had to take an extra baclofen to combat spasms.
Painful position has woken me several times. It's very cold making me shiver uncontrollably. Painfully biting mouth and gnashing teeth.
Eyes stinging and tired. Face itching. Managed to eat lunch. Mouth aching but less sticky.
Need to move. Buttocks very painful, knees ache.
Went to Mum's, brief visit Carer's cold worsened throughout the day. I feel a stuffy head and sore throat coming on-possibly Psychosomatic.
Sleep disturbed uncomfortable and dehydrated. Can't stop grinding my teeth and biting my mouth.
Exhausted! Good float at hydrotherapy but disappointed by ineffective physiotherapy exercises.
position pain growing discomfort. Hips and back hurt.
Shattered : family get together. Over 50 of us from many continents. No one could understand a word I said There was lots of love though.
Body clock totally out of synch but other than being wide awake when I should be fast asleep I'm pretty ok.
Feeling slightly more human though neck is hurting a lot.
Stiff joints positional discomfort sore buttocks and an infuriating twitch in left toes
Much better now I'm up and about but starting flu jab day I'm worn out.
Flu jab went fine Dr advises that I crush tablets and administer all medication enterally from now on due to choking episode.
Horrible stomach ache. Have to move, can't cope.
Stomach ache continued all day but regular hydration seemed to ease the pain. Exhausted.
Slept well straight through bar once for turning. Didn't have feed on overnight wonder if it could be off?
Quiet day very cold outside. Enjoyed messaging a long lost friend but possibly overdid it slightly eyes tired difficult/mouse control
Bottom stretched and sore. neck aches, legs and hips heavy back aches. Teeth grinding badly.
Nice lazy day, took daughter to the bus to spend a few days with her auntie then back home for rom exercise and cake.
Lovely night's sleep following weed and brandy evening. The tiniest amount really makes a difference.
Made stew and ate plenty. Daughter came home asking for fancy dress ideas. Exhausting but fun.
Some discomfort but positional and easily fixed glad to have another night no feed no stomach ache
Saturday carer is still sick Day out at the Media Museum with my p.a. and his children. Ate loads! still feel strong from Thursday.
great hilarity as daughter phoned from a party for a curfew extension and woke a befuddled carer who thought I was in distress.
After not a lot of sleep I am feeling lethargic. Daughter has been lovely though perhaps in an attempt to avoid revision homework!
Quite stiff and aching woke a couple of times but another night no feed no stomach ache. Really hungry right now.
had guests for dinner. Lovely evening and I had a run out in my chair locally this afternoon.