Appointment at Urology Clinic

Rachael attended her routine catheter change appointment. The procedure went smoothly. S said that the new yellow catheters are a lot easier to remove although they tend to block up slightly more than the other catheters. Another appointment was made for five weeks time.

Visit from Palliative Care Nurse

C came to visit Rachael to check on her progress. C and Rachael discussed the ongoing problems with Rachael's feed and stomach pains.

Rachael also told C about her sleeping difficulties and the knock on effects that this creates. C said that she would speak to Rachael's GP and to Dr P and try to find some suitable sleeping tablets.

There is also a prescription at the GP surgery for Prozac in liquid form.

C also said that she will contact J, the District Nurse, regarding syringes and A, the Occupational Therapist, regarding Rachael's bed and new slings.

Visit from Palliative Care Nurse

C visited Rachael to see how she is getting on. Rachael was asleep at first and C discussed the current situation with Rachael's PA.

When Rachael woke up C and Rachael discussed the ongoing problems with Rachael's feed and her stomach and head pains.

C altered Rachael's drug regime and added 20ml Paracetamol before each session of drugs. She also suggested taking Movicol again to aid bowel movements.

Visit from Dietitian

A visited Rachael to discuss some options for her feed. A suggested using a bolus feed with bottles of the same feed that Rachael is currently using.

A mixed 50ml of feed with 50ml of water.

Rachael said that she was concerned about how labour intensive bolus feeding would be. Rachael's PA asked if a bolus feed stand is available. A said that she will contact M, the Nutricia nurse, who will arrange an appointment to demonstrate how to set up and use the bolus feeding stand.

A will order a delivery of individual bottles of feed. Opened bottles can be kept in the fridge for 24 hours.

A then took details of Rachael's main medical contacts so that she can update them on her progress.

Visit from Occupational Therapist

A visited Rachael to try to adjust Rachael's bed. She wanted to lower the bed on a slant and let Rachael try it but there wasn't a key on the bed to unlock the remote control. A said that she will come back next week with a key and try again.

A said that she will look at other alternatives, such as a reclining chair, if the slanting bed does not work. In the meantime she is going to speak to other Occupational Therapists who are assisting MND patients.

Phone call from Dietitian

V telephoned Rachael to see if she had received and tried the Farrell bags. Rachael said that she had and that they did not work for her. V said that she was running out of options. She said that she will speak to other MND Specialist dietitians for further ideas. In the meantime she requested another appointment to discuss further with Rachael.

Home

Rachael is worried about her feed. She only really noticed it when she tried the little bottles during the day that she was still tasting it hours later. Since then it was really noticeable with the stronger two in one mix but even her usual feed taken overnight is smelling and tasting in the afternoon. 

The consistency of her saliva has changed or rather a new secretion has been added that is similar to feed. Rachael worries that she is not digesting it and she wonders if Domperidone could affect her digestive system. 

Rachael thinks it is more to do with MND shutting down her digestive system. Rachael is still losing weight.

Rachael needs her PAs to take it seriously so that she doesn't have to panic. Rachael wants her PAs to give her feed as routine.

Rachael needs proper advice from the dietitian. She was told that if she could not tolerate enough feed there is nothing they can do.

Home

Every time Rachael has a feed during the day she feels that it is rising through her throat into her mouth when she has a flush. This has been happening since she went onto her new drugs. She would like this to be mentioned to her GP next time she sees her.

Phone call from Dietitian

A telephoned Rachael and said that she would order seven days worth of Farrell bags for Rachael to try. She did stress that the instructions should be followed strictly. The order will be delivered early next week.

Phone call from Palliative Care Nurse

C telephoned V, Rachael's dietitian, to tell her that the 2cal feed is giving Rachael a bloated stomach. The dietitian explained that the 2cal feed was a last resort and that the bloated feeling may last up to twenty four hours.

Rachael asked if a different giving set would help and showed C a Farrell bag and giving set on the Internet.

C phoned V again to see if she can arrange a different giving set for Rachael. C also asked what is the minimum amount of calories that Rachael needs daily. V said 700 ml which is roughly 1050 kcal. V will get in touch with C who will then contact Rachael.