I will be heading off to the hospital for the MDT meeting in about 2 hours. I put together the following list of things to be discussed... One of the few things I do when I can not fall asleep... I will update later tonight on the outcome of the meeting.

SALT:

• Goal # 1: Establish some form of communication (Switches, Computer Programs). How to establish communication? Which tools are available?
• Goal # 2: Further his eating ability. Ability to chew hard solids to be developed and continuous work towards this goal. I want Chris to eat a steak soon.

Neuro Consultant:

• Spasticity: change in drugs, dosage, types of medication?
• Ambien/ Zolpidem
• Brain stimulants: AAI (Attention Arousal Initiation) drugs
• Taurine and GABA supplements?
• Main risks for Chris: hydrocephalus? Any other things I should be aware of?
• Baclofen Pump:
o Discuss and review, only pump to be inserted if resistant to depth necessary for future HBOT treatments
• Magnesium supplement?
• I really want a MRI and EEG carried out if only for my own data keeping purposes, but I think it will be good to have some concrete exams to be benchmarked against every year.

PT:

• Spasticity:
o Arms: correct, attenuate/ alleviate deformity and pain
o Legs: work towards gaing full range to be able to stretch fully and stand on tilt table
o Shoulders: works towards loosening tightness and gain some flexibility
o Elbows: HO on the left side, work on stretching out the right side. Can anything be done??
• Splinting:
o Any changes being contemplated?
o Splinting chart is not visible: ensure they are ALL being carried out.
o Who does it and are they trained to put them on for Chris
o Weekend protocol?

• Other areas of potential risk? Pelvis rotation? Any thing I should be aware of?
• Instead of maintenance, can any goals to be put in place? i.e. Sitting balance/ ability to sit without crashing and falling.


Posture Management:

• Wheelchair: headrest must be changed as current one is not appropriate anymore for his head and does not provide any support anymore
• Chris is bending towards the right side, sometimes on his chair, other times in his bed: Back/ Column must be preserved.


Nutrition/ Dietician:

• Inclusion of the following supplements on a daily basis:
o Marine Plankton: daily
o Glyconutrients: daily
o Cod Liver Oil: daily
o Chinese Herbs: twice as week
o Applesauce: daily
o Blueberry juice: daily (IN PROGRESS)

• Feeding tube used for: medication, feed at night to complement (quantity to be determined), and fluids.

• Orally: lunch and dinner. Introduce a fluid chart so that a certain minimum is given orally.

• Goal: phase feeding tube out.

Nursing Care:

• Skin area around inside elbow, specially the left side: please maintain proper care by cleaning it daily and ensuring it’s properly cared for.
• Area in the stomach around PEG tube must be cleaned everyday and checked for
• Skin inside his hands, between fingers: must be cleaned and kept dry
• Wheelchair time? Bed time? How often turned? Turning chart in the room?
• Can pillow go between Chris’ biceps and torax on his left side, and also between chest and left hand? He is very tight on the left side.

Alternative Treatments:

• Reiki: once a month by Ann-Margaret Whittle
• Hand massage: daily for 30 minutes by Faye
• Acupuncture: once a week by [to be determined, I need to find someone in the area]
• Reflexology: once or twice a week by [to be determined]
• Full Body massage/ aromatherapy: once a week by [to be determined]

Chris weekly schedule:

• Bath 3x per week
• Shampoo 2x per week
• Daily shaving not necessary: 3x a week (plus Koo on weekend)
• PT: 3x per week, SALT, OT frequency?
• Other activities:
o Movies on Monday evenings: Koo will try to come weekly and spend the night, if possible
o Other outings available?
• Mouth hygiene: 3x daily - upon getting up, after lunch, after dinner
• Haircut: once a month, please automatically schedule Chris every month
• Family’s responsibility: nail clipping, ear cleaning, supply blueberry juice, and all extra supplements.

General Summary of Chris day:

Early morning: Hygiene, bath, getting up, supplements
Morning: splinting, PT
Lunchtime: Have lunch with everyone in the dining room
Afternoon: SALT, OT, alternative therapies, social activities, etc
Dinnertime: Have dinner with everyone in the dining room
Evening: Bed time: watch TV and sleep

Other future plans:

• Stem cell in China: planning to depart late June 2007 for two months. Bring all information gathered, contact details of doctors and hospital in Beijing.
o Logistics (i.e. flight to Beijing WIP, choice of direct flight is BA or China Airways, BA preferred)
• HBOT: 20 dives every 3-months or 3x a year:
o For 2007, the target is late January, May, and September
o Location: MS Center in Walthamstow E17
o Morning dives: 30 min. commute each way, plus 1 hr dive
o Family to buy a wheelchair van or can the Jacob “rent” their vehicles

In 6 months’ time around late June 2006, my personal expectations given the above:

• Chris is able to communicate: at least to convey definite yes and no very consistently.
• Chris is able to mouth some words
• Chris is able to have his favorite Brazilian steak “Picanha Fatiada”
• Chris’ arms are relaxed
• Chris legs can be fully stretch and can stand up straight on the tilt table
• Chris posture is stronger and without bent, he is able to hold himself with certain balance
• Chris is able to have some movement control
• Chris continues to keep the record of no infections/ pneumonia, seizures, and other common problems of people with ABI

Things to do/ do not forget:

• Sew name tags for all of Chris’ clothes and socks;
• Go buy: paint and brush to paint Chris room, border/ wall paper to decorate
• Frame pictures for Chris room
• Get a sofa/ bed/ cushion something to be able to spend nights in his room once a week or every 2 weeks
• Go to Heathrow, call British Airways
• Arrange conference call among Dr.’s in China and the Jacob Centre, if necessary.