12/03/12

Monday was a quiet day for Jules.  The ventilator breathing tube was replaced early yesterday morning as the tube that pressurises the inflatable section to seal the airway was damaged ( Jules chewed it - we think she was conveyng "Get this damn thing out of my mouth and throat! )  The new tube is better positioned and appears more comfortable.  She still has drains in place from the surgery on Saturday.  They are turning her regularly to prevent pressure problems.  The ICU nurses are maintaining her sedation and pain medication at a level so she is comfortable.  She also seems to have less discomfort from sputum though it is hard for us to tell if this is just due to the level of sedation.  She is drowsy slipping into sleep but when her eyes are open she is aware we are there and is able to respond weakly by shaking or nodding her head.

 They are hoping to reduce the sedation progressively and remove the tube later this week and hopefully she will breathe unassisted.

 She is being fed by a tube I asked the nurse about it and she said it was a high fibre mix like weetbix.

 Jules looked peaceful yesterday and we are hoping for improvements each day.  Monday has really brought home to us that this is going to be a long journey for us all, mutual support and positive thinking will get us through.

 We will update you all further tomorrow.

Kind regards Val, Norm, Kylie and Darrel

11/03/12

We saw Jules a number of times yesterday she is heavily sedated to help her cope with the discomfort of the ventilator tube.  she was aware of our presence most of the time and able to respond to questions with a weak nod or shake of the head.  The ventilator is a very clever device, it is programmed to breathe for her completely or just to assist if she is trying to breathe herself
 

The ICU head doctor has indicated that they are likely to keep her on the ventilator for a couple more days yet then see how she goes breathing for herself. He indicated that patients with injuries similar to Jules who come into ICU generally do go back to breathing for themselves within a couple of weeks as other nerves assist the diaphragm muscles to function.

 

 If she is unable to breathe in the short term then she will have a tracheostomy in her neck which will mean that she will not have the discomfort of the tube in her throat

 

Peter Curtain who had a similar injury 30 years ago and recovered called in to see her yesterday. I think she was aware he was there and he said he will return to see her again this week.  He related some of his experiences to us and I think he will be great support for Jules as he has been there done that.  Peter indicated that he still has to consciously think about every step he takes and that he has many functions that don't work properly but he mostly leads a normal life.

 After the surgery this week is going to be pretty much wait and see what happens as the swelling subsides so it will be many fingers crossed and lots of positive thinking.

 We hope the apartment rental is approved at Kangaroo Pt today and that we can move in late today or tomorrow.

 We will update you all further tomorrow.

 Kind regards Val, Norm, Kylie and Darrel

10/03/12

Saturday was a frustrating day, the surgery that was scheduled for the morning was delayed and Julie wasn't taken into theatre until after 3PM. During Friday night her breathing deteriorated and she was put on a ventilator to breathe for her and heavily sedated for the discomfort of the tube.  The injury has affected the nerves which control the diaphragm and she is unable to take deep enough breaths to be able to cough and clear the sputum from her lungs.  The ICU nurse told us after the operation that in time other nerves can be trained and that her breathing should improve.  If it takes more than a couple of days they may perform a tracheotomy and insert the tube direct into her windpipe which will make things more comfortable for her as she should be able to take nourishment by mouth and whisper after the the ventilator tube is removed from her throat. 

Originally the operation was thought to take about two hours but finished up taking four.  The surgeon indicated to Darrel that the operation was successful and that they had no problems and Jules came through it well.  She looked very peaceful when we saw her back in the ICU.

The ICU is a sterile environment and they don't allow flowers.  So any of you who wish to send flowers please hold off until she is in the spinal ward.

 

For you to understand the nature of Julies injury there is some information here http://www.disabled-world.com/artman/publish/spine_picture.shtml and here http://www.apparelyzed.com/broken-neck.html and here http://www.apparelyzed.com/quadriplegia-quadriplegic.html

We continue to be hopeful of some recovery but understand that it is likely to be a long process and that Jules will need all our support over the coming months.  We are awaiting approval on the rental of an apartment at Kangaroo Point a few kms from the hospital and are planning that at least two family members will be in Brisbane at all times.  Darrel is family.

Regarding visiting, the ICU has a policy of no visitation between 8AM and 11AM and the hospital is closed to the public after 8:30PM in the evening.  Julie will welcome short visits from friends.  A friend of hers who suffered from spinal injuries some years back has provided us with a schedule of do's and don'ts for visitors

Things that helped :

· Positive smiling supportive faces

· Having personal things around you ie pictures, favourite plant etc...

· I had my best mate bring me in Playstation 2, I hadn’t played with a gaming console for 6 years +

· TV and Videos, books, laptop, email access, people to play cards with ... (if Julie is able to communicate, maybe someone can be her puppet and play scrabble on her behalf) again might be too soon for this!

· Knowing there was a possibility in 6 months to get out of bed and into a wheel chair and get discharged from hospital (took me 3 months, I was keen as and determined to get out)

Things that depressed and frustrated :

· Peoples pity after a while

· Sad faces or worry and depressed looks

· Not being able to leave cell (room) ... had a nurse wheel my bed outside twice, this was HEAVEN!!

Could you please copy any replies to Val at val@brice-eng.com.au



Kind regards Val, Norm, Kylie and Darrel

09/03/12

We saw Jules shortly after 11AM  (there is no visiting between 8 and 11AM when the doctors do their rounds) she was awake and alert.  She was off the ventilator breathing by herself but still receiving oxygen through a manifold under her nose, this is an uncomfortable piece of equipment.  She is able to lift her head from the pillow and turn it slightly to the left and right.

We saw the senior ICU doctor who gave us an outline of where Jules is at now.  The surgery removed the piece of C5 that was pressing on her spinal chord, inserted a bone graft from her femoral head and stabilised the anterior side of her spine with a metal plate.  She requires a further operation to stabilise the posterior side of the spine and that is scheduled for the morning of 10 March, that will involve removing and repositioning of the broken pieces of C3 and C4 and insertion of a reinforcing plate which will be fastened to C4 and C6.  This should fully stabilise her spine.  This surgery is expected to take about 2 hours.  She is on "nil by mouth" until after the surgery.

He explained in fairly plain terms the journey forward.  The damage to the spinal cord is severe at C4-5 and is affecting her breathing as the nerves that control the diaphragm are not working properly, she is unable to take deep enough breaths to cough to expel sputum that the lungs produce, physiotherapy will help this.  The nerve signals that control all function below the elbows and chest are damaged and not functioning.  The next few days and weeks are important as we may get some idea of what damage is permanent and what is spinal shock as the swelling of tissue around the injury site subsides.  There is no sensation below the elbows and chest although she can raise her right arm slightly and we can see some muscle movement as she tries to move the left lower arm. 

The doctor indicated that length of her stay in ICU will be dependant on the progress of her breathing, but is likely to be weeks.  Whilst the prognosis is not bright we remain hopeful as we hear stories of people with similar injuries who in time have made good recoveries.

Jules was assessed by the physiotherapists but we have not received a report from them yet

Peter Curtain had severe injuries at C5-6 some years ago and was given a similar prognosis to Jules.  He was able to move a finger after 100 days and has gone on to walk and lead a pretty much normal life, he said he has plenty of things that don't work but enough that do to allow him to function.  He is going to visit Julie on Sunday.

Darrel, Val and I are holding up well just being there for Jules.  There is a lot of waiting around as the ICU is a busy place.  The care in ICU  is absolutely amazing it is 24/7 one on one nursing and the nurses are so competent, compassionate and caring, nothing is a trouble to them.  Julie has had some friends visit today and Margie and Larissa are coming down tomorrow.  Jules is interested hearing positive things and things that relate to everyday life and work.  She has asked to see some photos of the cofferdams she designed for the aquarium repairs that were completed in the workshop this week, and is interested in the progress of various tenders she has worked on.  We are keeping her updated

Val is going to get some audio books and friends are bringing some of her favourite music for her to listen to.  We will be able to brush her hair and teeth and attend to some of her personal needs by applying moisturiser to her skin, etc.

Louise Boyle who had a bad fall and serious spinal injuries has told us the importance of keeping positive.  She kept a blog about her experiences and feeling as they happened and whilst Jules can't use her hands to type at present we are  intending to keep a computer there and record what she wants.  Louise intends to visit next week.

Val, Norm & Darrel

08/03/12 part 2

Julie had surgery today to decompress her spinal cord, and to repair some damage to her knee and leg.  She went into theatre about 10 AM and was returned to ICU about 6:30 this evening, when we were allowed to see her briefly.  At about 5 PM the surgeon phoned Darrel and told him that the surgery on her neck went well with no problems and that they were going to operate on her legs before taking her back to ICU.  It is a relief this major surgery is over we hope to get a more comprehensive report tomorrow.

Julie was medicated to keep her asleep overnight and because of the medication was on a ventilator to breathe for her.  The will remove the tube tomorrow before they wake her.  She looked small and vulnerable on her bed but her colour is good and her face was peaceful.  We remain hopeful.  ICU does not let visitors in until 11 AM in the morning.  We will go back and see her then she may be conscious and to speak with us.

Norm and Val

08/03/12

Jules was transferred to PA last night arriving at ICU at midnight.  She has been assessed and scheduled for surgery this morning at about 10AM the surgery is expected to take about 6 hours.

We will keep you posted

Norm & Val

07/03/12 part 2

Jules has spent an uncomfortable day while her situation was assessed by the ICU and neurological teams.  We had arranged to transfer her to the Mater private hospital to be operated on by a specialist orthopedic surgeon.  After making this decision it became apparent that their ICU unit had no quadraplegic nursing capability and that was cancelled.  The specialist then offered to assist the neurosurgeon at the TGH but was refused.  Apparently there are some medical politics involved.

It was now 2:30PM in the afternoon and the TGH neurosurgeons decided that Jules would be better served by being operated on and treated in the spinal care unit of the PA hospital in Brisbane.  They have arranged an ICU bed and she is to  be flown to Brisbane by the RFDS sometime after 7PM tonight.

It has been a day of frustrations. poor Jules is conscious, aware, and able to engage in conversation.  She understands the situation pretty well and is fearful and frightened.

 

The situation is that vertebra C5 is fractured into a number of pieces and the large anterior piece has broken a longitudinal ligament and compressed the spinal cord.  Vertebra C4 and C3 have some posterior pieces broken off which require removal but as I understand it are not threatening the spinal cord.  The operation tomorrow is to remove the piece of C5 and replace it with a bone graft in the correct position to decompress the spinal cord, metal plates will be fastened to either side of the spine to effectively fuse the vertebra between C4 and C6 then it is wait and see with lots of in patient physio: at least 4-6 months, and a similar time of outpatient physio and then a lot of work at home to keep working on things.  Some recover, some improve, and some don't.  We are hoping Jules is in one of the first two categories

We are trying to stay positive and hoping for good outcome.  The next few days are important.

Val and Norm