Catheter change at Wy Hospital

Rachael attended her catheter change appointment. S used a substitute catheter, which is not made of silicone and is not open ended, because Rachael's usual catheter had not arrived.

S told Rachael to contact him if this catheter causes any problems and he will arrange to change it. He also said that if Rachael's GP prescribes the catheters for her, she will be able to bring them to the hospital with her.

Rachael's bladder wash was clear although the catheter tube was quite milky.

emails exchanged with Lung Clinic Nurse

Rachael received an email from D following her visit the previous day.

D said that she had faxed Rachael's GP that morning asking for a prescription for Lorazepam 0.5 mgs and Oramorph for her to take as required. D recommended that Rachael takes the Oramorph at the lowest prescription and see how she goes on.

D would like to visit Rachael on the following Monday morning with the Senior Physiotherapist from the lung clinic at Wy Hospital.

Rachael replied that that would be great. She asked D to let her know what time the visit would take place.

Visit from Lung Clinic Nurse

D visited Rachael to discuss with her the breathing difficulties and feelings of anxiety that Rachael has been experiencing recently.

After discussing Rachael's symptoms and anxieties in detail D proposed the following courses of action.

1. A prescription of Oramorph for Rachael to take before she goes to bed. This should relax her and allow her breathing to synchronise better with the NIV. She also recommended using the NIV overnight. She will organise this with Rachael's GP, Dr.G.

2. To make more frequent use of the Lorazepam but to use only half a tablet at a time. 0.5mg. D recommended that Rachael should take a smaller dose of the Lorazepam as required. D hoped that the smaller dose would still help with anxiety but would not knock Rachael out.

3. D will make enquiries about improving Rachael's bed to make her more comfortable and to improve the quality of her sleep.

4. D will return as soon as possible, hopefully next week, to spend a couple of hours with Rachael whilst she is on the NIV, in order to further assess Rachael and to make any adjustments to the machine that may be required.

Visit from Technology Services

S visited Rachael to try and repair the faulty Possum unit. It is working in the bedroom but not anywhere else. S thought that there was a problem with the battery in the unit but he did not have a replacement with him.

S said that he would send out a pager unit, in the post, that can be used until he can bring a replacement Possum unit. He is hoping to bring this early next week.

Visit from Physiotherapist

Rachael had a visit from A, her physiotherapist. A brought some yankauers and tubing for the suction machine and some hand splints. A fitted the left hand splint and said that she did not have a right hand splint in a medium size. Rachael told A that it is the right hand one that hurts a little. A then put a small right hand one on. Rachael said that this was better and asked for a small left hand one as well. 
A said that she would deliver one early next week and that the suction machine filter would be sent by post.

email from MND nurse

Rachael received an email from S, the MND nurse. S hopes that the use of the NIV is giving Rachael some relief and that the mornings are a little better for her.

She advised Rachael to keep up with the Cough Assist machine and the increased mouth care opportunities.

S is going to speak to Dr E about the use of Carbocisteine and will write to Rachael's GP soon after this. She will also confirm a specific date for Rachael's rig change.

S then wrote that it had been good to have an opportunity to catch up with Rachael.

S went on to say that having touched on the area of Rachael's Power of Attorney during their meeting and thinking of future situations and what Rachael would like to happen, that Rachael should contact her if she would like to discuss this further and document her wishes in relation to care, symptom management and options with regard to interventions that she would like to explore.

She said that Dr B's team would also be valuable in this discussion.

S asked Rachael to keep her posted re her symptoms.

email from MND nurse

Rachael received a follow up email from S which related to her emergency visit to the MND Clinic at SR Hospital. The email was also sent to the staff at the Lung Clinic at Wy Hospital and was  copied to Dr E.

S wrote that Rachael had a blood test on arrival at the clinic and gave the results of this. 

She then put the reasons for Rachael's visit. These were increased episodes of shortness of breath during the day and panic attacks in the morning. She then reported that the dose of Lorazepam that Rachael had taken had helped.

S said that Rachael is no more sleepy than usual but is snoozing during the day.

The email went on to say that Rachael has been using the NIV most evenings for two hours. All past outpatient appointments with the Lung clinic have recommended this usage as Rachael's gases appear to be within the normal range.

Rachael told S today that she has not used the NIV this year. There are several reasons for this but the main reason is the mask fitting and the leaks that occur due to this. Also Rachael has had some recent PA changes and she felt that she would be unable to effectively communicate her wishes whilst on the NIV. 

S said that the physiotherapist had seen Rachael and had given advice on adjusting the mask. She then outlined the plan that has been put in place for Rachael re usage of the NIV .

S asked whether it would be possible for Rachael to have an earlier appointment at the Lung Clinic.

Appointment at SR Hospital

Rachael attended her appointment at SR Hospital regarding the panic attacks that she has been having.

When Rachael arrived at the clinic a blood test was taken to test her blood gases.

She then waited for the results which were; PCO2 - 6.61, PO2 - 9.88, Bicarb - 32.1, PH - 7.428. 

S, the MND nurse, then spoke to Rachael. She suggested that Rachael tried using the NIV machine and Sara, the physiotherapist, showed Rachael's PAs how to fit the mask with minimal leakage.

Rachael was advised to use the NIV daily for two hours and to report any symptoms to SR or Wy Hospital staff.  Rachael was also advised to discuss an exit strategy when using the NIV with all her PAs, as communication is difficult when Rachael is wearing the mask.

S also advised Rachael that she should have a rig change in March, S will try to make an appointment for this. 
Rachael was then given advice on mouth care. If she uses a small amount of pineapple juice on a soft toothbrush daily this will help to reduce the amount of saliva that is formed.

email from Speech Therapist

M emailed Rachael re the upgrade that is needed for her My Tobii computer. M has contacted T at SmartBox to see what can be arranged. T confirmed that a loan device can be made available for Rachael whilst her own is being upgraded. This would be delivered to Rachael and her own machine will be collected and sent to Sweden for the upgrade. 

T will contact Rachael when a loan machine is available.

Orthotics appointment at B Hospital

Rachael attended her Orthotics appointment for a fitting of her new shoes.

The shoes are on the large size as requested and the insole has a raised toe area.

The shoes were a little tricky to fit but this was mainly because they were a little stiff and inflexible due to them being new.

V said that they would become softer with wear and then they would be more like her old shoes.

Once Rachael had the shoes on she said that they felt a bit odd but were not uncomfortable.

V was happy with the fit of the shoes and made another appointment, to see how Rachael is getting on with them, in eight weeks time.

Home

Rachael had panic attacks during the night of Monday 21st January and again today, causing her great stress, discomfort and difficulty in breathing.

After a prolonged bout of distress today, Rachael asked her PA to phone RM at SR Hospital for advice.

RM recommended use of the NIV machine but this had already been tried and it had only made Rachael feel more uncomfortable.

RM also recommended a small dose of Lorazepam, which can be obtained from the GP, as a temporary measure and that Rachael should come into the hospital for breathing tests as soon as possible. An appointment was made for the following day.

Rachael remembered that she already had some Lorazepam in her Just in Case kit. A 1mg tablet was given to Rachael through her rig.

The tablet was quick acting and the effects lasted for approximately four hours. Although the anxiety stopped Rachael felt disorientated and oddly disconnected.

Hydro

Rachael attended her hydro session. The Session Supervisor was M and there was also a trainee in the pool. 
M does not seem to understand Rachael's needs. He said to the trainee that if he finds that Rachael has a painful area he will avoid it and work on a different area.

Rachael spent longer in the pool this week because another department had borrowed the hoist. Rachael waited in the pool until it was returned.

Visit from Technology Services

S visited Rachael to change the broken handset by Rachael's bed and to install a separate box charging unit for the upstairs bedroom.

Rachael asked S whether it would be possible to have a second handset to go with the upstairs base unit. S said that this could not be done as it would overload the system.

S also had a look at Rachael's computer, which is running slowly because the memory is nearly full. S said that he would talk to the staff at Smart Box and M, Rachael's speech therapist, to see if he could get the computer repaired or upgraded.

Hydro

Rachael attended her hydro session. M was the only member of staff in the pool so Rachael had a short session of twenty five minutes.

M found it difficult to communicate with Rachael even though her PA was present at the side of the pool throughout the session.

Rachael had pain in her shoulder blade whilst her arm was being moved. M did not work on this area but he massaged Rachael's neck instead.

Rachael was then left to float for fifteen minutes. M returned to do some push offs with Rachael's legs. However M could not bend Rachael's knees enough for her to be able to apply some force to the push off, so she simply floated away from the wall. Rachael did not benefit greatly from the exercise but M congratulated her on her effort.

email from Speech Therapist

Rachael sent an email to M to inform her that the new stand for the MyTobii computer had arrived and that it is in good working  order and everything fits fine. Rachael thanked M for sorting it out. Rachael told M that she is now going to look for an over-bed table.

M replied the following day. She said that this was fantastic news, she was beginning to get a bit worried that she hadn't heard anything. She hopes that Rachael can get her table rigged up without too much delay.