Thursday, 30 September 2010
Wednesday, 29 September 2010
"Thanks for arranging refresher training (overnight feeding/pump). Marie gave me a demonstration and talked through issues around pump use. Rachael has been choking more frequently at night, necessitating moves and occassional hoisting. Marie advised detatching/reattaching feed. When there are breaks at night, Rachael has insufficient feed. She is aware she needs to finish the dose or supplement with food."
“Thank you for keeping me up to date with everything. I hope things get sorted out asap. On another note, Marie (Nutricia Nurse) was in contact with me and mentioned that you may be interested in having some extra energy via tube? If this is something you are interested in, we can always look at using increased energy feed at night with same volume. Or we could look at trying additional boluses (small volume of feed that is gravity fed down the tube at various times during the day. The latter of these would take about 20 minutes for each bolus. If either of these are something you’re interested in, please let me know and I can organise to visit to discuss further.” - Claire
Tuesday, 28 September 2010
"I have spoken to a lovely lady called Lesley who is a secretary at Urology, Wy Hospital. She is going to check with Dr Gu as to whether you need to see Dr M. Apparently, both consultants do surgery at Wy Hospital but outpatients elsewhere. Apparently, both consultants do surgery at Wy Hospital, but outpatients elsewhere (Dr M - W Hospital, Dr Gu - TG Hospital). We suspect the referral came into the department and that one doesn't know who the other is. Lesley will get back to me and I in turn to you. I have expressed how difficult it is for you to attend OPA's and that we really want you to avoid attending unnecessarily. " - Sam
"I am keen to proceed as you have outlined. I had a prior appointment with Dr M (Urology, Wy Hospital). This has now been confirmed for 07/10/10 at 9:30am. To avoid any conflict, can I leave it to you to confer with Dr M. This procedure will have a huge impact on my quality of life." - Rachael
"I have left a message for Urology Dept at Wy Hospital to get back to you just to see if they all work together. I think you say "Yes please" to Dr Gu but in the email ask that he cancel the appointment with Dr M because you assume you no longer require the consultation. See if he says differently. We want to save you the trip if we can." - Sam
“The saga continues. We contacted Dr M’s surgery at W Hospital (not Wy Hospital!) who confirmed that I should attend my appointment on 01/10/10. I cancelled hydrotherapy. Today, I received a letter informing me of a postponement til the 22/10/10. We rang to clarify and was told Dr M had requested an earlier date. I now have an appointment with Dr M on 07/10/10. I have no idea what the appointment is for but I think, all in all, it is easier just to attend.” - Rachael
Monday, 27 September 2010
Marie visited to demonstrate the equipment for overnight feeds. We tried Bolus feeding but decided it was too slow. Marie will report her visit to Claire (Dietician). Discussed risk of choking overnight. Ideal angle for the bed is 45 degrees,and a minimum of 30 degrees. Marie inspected the arrangement for feed/emergency switch.
Friday, 24 September 2010
On seeing Rachael's feet sticking off her foot plates on her wheelchair, Sharon said that she would order a "tray" to give her feet more protection. She took all the details from the chair and said she would contact them. During the session, her right foot and right thumb began twitching uncontrollably. This happens increasingly after exercise. Sharon also discussed Rachael's muscle loss in her legs, choking at night and change to feed routine.
"I hope you can clear up a mystery for me. I saw:
Dr B (Respiratory, Wy Hospital) on 11/08/10
Dr Be (Urology, H Hospital) on 18/08/10
Dr A (Gynaecology, R Hospital) on 19/08/10
Dr B (Respiratory, Wy Hospital) on 15/09/10
I am due to see:
Dr M (Urology, Wy Hospital) on 01/10/10
Dr E (Neurology, H Hospital) on 20/10/10
Dr Gu (Urology, TG Hospital) turned up unexpectedly at Dr B's clinic on 15/09/10, saw me and left without speaking to Dr B. I do not know whether to keep my appointment with Dr M. There was some confusion about who Dr Gu was. Dr B inferred, from his notes, that he was Dr R (Urology, Wy Hospital/TG Hospital) and gave me Dr R's secretary's number. I rang them and they had never heard of me. I have too many urologists. Do I answer this email with "Yes please" or wait for Dr M?" - Rachael
Thursday, 23 September 2010
"Further to my consultation last week with you last week, I have had the chance to speak to the anaesthetist. He feels that a spinal tap would be possible with you lying on your side. I am aware that the most important aspect is to ensure adequate pain relief, and understand your fears of not being able to communicate any pain issue across. If you are agreeable to go ahead with the procedure as explained in clinic, I will list you to come in due course. I will liase with the chest doctors so that you can be admitted to the chest ward for optimisation. You'll be in hospital for a few days. Please let me know if you would like to go ahead with the Suprapubic Catheter insertion."
Rang to query whether I needed to attend appointment with Dr M on 01/10/10 at 10am. Secretary said to speak to GP direct. I said I have been told to speak to her. Secretary refused to say whether appointment should be cancelled and said will speak to a doctor then call back by tomorrow. She gave contact number.
Tuesday, 21 September 2010
Rachael confirmed hand splints are proving effective and said she would monitor her headaches in the morning in case they got any worse. Angela showed collar and demonstrated on Richard (student physiotherapist). Angela said the collar could be used both in the car and in the hoist. She also warned about the pressure points on the collar bone but said to use the collar at anytime it is needed. Angela took Rachael's email address. Discussed changes in position, in velcro adjusters and neck button.
Monday, 20 September 2010
"The switch by my bed, connected to the telephone handset, which rings internally is working really well to contact my overnight care. One niggle, I cannot hear whether the handset is ringing upstairs: consequently, I keep ending the call before it is answered. Is there any way to make the base unit ring when the handset is ringing? Do you have any other solutions? Hope the website is going well." - Rachael
Thursday, 16 September 2010
Claire said Nutricia have been contacted and feeding tubes will be amended to the regular type for tomorrows delivery. Claire also said she has left a message for a Nutricia nurse to contact her asap about an overnight feed demonstration.
Claire queried how often Rachael eats. She said at least one bowl a day and explained need for overnight feeding. Discussed changing feeding tubes from mobile type to regular type. Claire said she will contact Nutricia today and try and get tubes changed for delivery tomorrow. Claire said to commence overnight feeding at 50mls/hr, then to increase by 10mls/hr every night thereafter until a maximum of 100mls/hr dependent on Rachael's tolerance.
Wednesday, 15 September 2010
Blood gas test results showed as normal. Dr B ran through options for non-invasive vent but did not feel it was necessary yet. He advised against using general anaesthetic. We discussed choking episodes in the night and Dr B said that this is not necessarily due to anxiety but a sign of bulbar distress.
Thursday, 9 September 2010
Rang to query whether I needed to attend appointment with Dr M on 01/10/10 at 10am. Secretary said to speak to GP direct. I advised have been told to speak to her. Secretary refused to say whether appointment should be cancelled and said will speak to a doctor then call back by tomorrow.