January 23 2013

Spoke to the charge nurse.  Helen is fine and has settled in well.  She is still under observation and will be for a couple of weeks until they get to know her.  She is very sweaty, especially after having her nebuliser. Her temperature is around 37.1-37.6.  The doctor has been to see her and has advised watchful waiting. She has no other apparent signs of a UTI.

She is now sitting out in a wheelchair for 1 to 2 hours.  They will build up tolerance to sitting to enable her to take part in activities out of the room.

Let him know I wasn't coming on Friday but we would all be in on Saturday.  Also let him know that I had got the message from the OT and would call her tomorrow/Friday.

January 21 2013

Helen has arrived safely!!  Let them know that me, Theresa, Rachael, Isaac, James, JonJon and Dave will be visiting on Saturday.  They are quite happy with all of us coming.

January 17 2013

Helen was very alert today.  She was looking at Jonny and giving him evils because he has a beard!!  It is the first time that he has been in with proper growth.  She used to hate it!!!

Physio's are very happy with progress today.  Apparently Helen was holding her head on her own and moving her right leg.

The nurse said that we could take a holdall in to pack her stuff in.  

Need to buy:

Shampoo

Deodorant

Shower gel

Night shirts

Fluffy socks

Baggy t shirts

Joggers

Black marker pen

January 15 2013

All systems are go for Helen's move on 21st!! She was supposed to be returning to John Radcliffe to have a cranioplasty but they haven't had a bed available so not quite sure what will happen now. I don't know whether they will totally bypass the bone flap going in and go straight for titanium, done at Southampton. All her equipment, feed and drugs have been ordered and are ready to go.

I have spoken to the Sister in charge of the ward Helen is going on to. She has given me suggestions for clothing but I forgot to ask her about nightwear. Helen is currently wearing night shirts that I have cut up the back (similar to a hospital gown but without the ties). Because of her contractures, do you think it would be more suitable for her to wear these rather than me go out and buy the same night shirts and not cut them? I really need to go shopping before the weekend. I might try to call the Sister again tomorrow.

She has got a telly in her room at Holy Cross already but her father wants to put loads of DVDs and music onto a hard disk and plug that into her own telly (an all singing, all dancing one). He says that DVDs are too scratchable and nickable. I said just to wait and see.

I can't believe the time for her to move on has come around so quickly.

January 14 2013

Helen is much more sleepy today.  The nurse will ask doctors about it.

No news yet from John Radcliffe.  Suspect Helen won't be going up there before going to Holy Cross.  The nurses are going to chase again today for certain.

 

Doctors sent letter to John Radcliffe regarding bone flap.  We will get an answer before she leaves.

All her tablets & equipment have been ordered and will be ready to go with her. 


One of the nurses spoke to Holy Cross.  Helen will need baggy clothing but don't worry about underwear for the time being. There is so much to think about.  It is the total unknown that is one of the scary parts.  

 

January 9 2013

The physios had Helen sitting on edge of bed, supported by just 3 of them.  Initially it took 5 of them to support her.  Emily (physio) said that she would push for Helen to have more Botox in every limb before going to Holy Cross.  Helen's left arm stiff & straight and her right arm stiff & bent.  Her skin is very red and spotty today.  

One of the nurses said she would chase podiatry.  NICE guidelines say that she should have been seen within 24 hours.  Another nurse didn't know whether JR had been contacted today.

Supplies are being ordered for her move to Holy Cross.  She has to take feed, spare trachy tubes, medicines, etc for the first couple of weeks until they sort it out down there.

She has a rapid side to side eye movement at the moment.  It is a bit disconcerting.  My Dad thought that she could not see him when he was on her left side.  It may just be the she couldn't be bothered to look!!

January 7 2013

Phone call from Mr Duffy, Stroke Consultant today

The shunt is working fine.  The extreme depression confirms severe frontal lobe damage and atrophy. This was shown on the CT scan anyway.  This means that Helen has minimal chance of recovery of function.  She has damage to every cortex of the brain, nothing escaped.
 

They are trying to arrange getting bone flap back in at JR before her transfer to Holy Cross. They will decide on day whether bone flap or titanium depending on health of bone.  She should only be gone for 24 hours.
 

Her bowels are ok.  No signs of any underlying disease.  I forgot to query collagenous colitis that as on the discharge note from SGH.

Her right side is much looser.  This is probably due to the Botox injection.  However, the left side is much more tonal.  Helen will have a review by Guillaimbarlow(sp) with a view to having more Botox.

Blood sugars are more under control now.

January 2 2013

I had a discussion with one of the nurses about Helen's skull bone flap.  The Neuro team has been in contact with John Radcliffe but no one will be in until 7th January and they will phone again then.  Their thoughts are currently that the bone piece is too big to replace so titanium plate will be fitted.

 

Lantus has been increased to 86 units.  BM not above 11 today.

 

The physios have given her a new inflatable splint on right arm to straighten and keep it straight.  It was on for 20 minutes today.  Splint is also to be used on left arm.

I queried whether she might have a hormone imbalance.  She has the most terrible acne and is really hairy!! I'm hoping they may eventually do blood tests to see what's going on.

Great toe on left foot is still red and inflamed today, right great toe not as much.  Podiatry referral done last week.

She is still very sleepy today.  She hasn't really woken up much or been very responsive.

 

Her urine still has debris in but no UTI present.