31/03/12

Darrel was first to visit Jules today, I dropped him off while Trish and I went to Sam's Seafood in Hamitlon to get some of Jules favourite foods.  We left with some prawns, large bugs and a huge mud crab 1.9kg in weight.  Back to the apartment to prepare a yummy seafood salad.  Jules was amazed it looked so much better than the sandwich the hospital provided.  She tucked into it with great relish and ate a decent serving which left some for dinner for her to share with Darrel.

 It was pretty much the usual routine yesterday shower, wash hair, physio eat, drink, being turned by the wardies, speaking valve, off ventilator, on ventilator, check email, scan newspapers.  It is a very busy routine and before we know it it is eight o'clock.  Jules and Darrel ate dinner together and then watched a movie before he left about 9:45PM

 I can see Jules strength increasing each day.  Darrel and I did a couple of sessions of physio with Jules on her biceps and triceps, I am certain there is an improvement in strength from the yesterday.  It is hard work for Jules requiring intense concentration as her brain wills her nerves to do their stuff.  We will continue with physio today.

 Jules is very happy to welcome visitors and quite animated when she can chat with the speaking valve, though it is quite tiring for her.  She is very grateful for the cosmetics that friends have sent and we are using them to keep her looking good, she loves the attention and contact when they are applied.  If she will agree we will get a before and after photo to include tomorrow.

 Clinically there is not much to report which is good, she is not in pain or on any pain medication except for some oxycodeine to relieve the pain when the tracheostomy dressing is changed daily, and some tamezepan to help her sleep.

Julies accident demonstrates to us all that we have no idea what life has in store for us; it can change in a heartbeat.  Don't look back or dwell in the past, nothing is served by having regrets and asking what if .  Look forward not back, and be optimistic and positive.  We all have latent abilities and talents we haven't even dreamed of.  It takes a challenge to make us look inside ourselves and find the strength repair the damage done and to find and maximise these latent abilities.  Julies strength of spirit is an inspiration to us all.  Life is good.

Only a short report today, but of positive progress.

 Kind regards Norm

30/03/12

Jules was just off for her shower when I arrived.  I had her lunch mushroom rissotto with fruit cake for afters in my bag which was just as well as the cheese and chutney sandwich the hospital provided didn't look that great.  After the shower and hair wash Julie had a latte then tucked into the rissoto a piece of fruit cake and some fruit.

 It's full on in ICU with physio, breathing, speaking, being turned, placed in the chair, going to the balcony for a cup of tea and a chocolate brownie, then back to the ward for more speaking, checking of emails.  Then it was time on the ventilator and a rest before dinner.  A short chat with Russel and Colin before dinner (hospital food ugh) the fish looked like white cardboard, the smoked salmon we had in the fridge was a good substitute, the broccoli had been cooked to almost complete destruction and the less said about the mash the better, a glass of grapefruit juice then some grapes and strawberries to finish.  It was now 8:30 PM. After dinner Jules watched episode 3 of Suburgatory on the ipad but I wouldn't be surprised if she dozed off before the end.

 Clinically through the day there was not much to report the doctor showed me Jules lung X-rays.  Before the bronchoscopies the left lung was completely white on the X-ray collapsed with fluid.  After the bronchoscopies the white areas reduced and the latest X-rays have virtually no white areas and both lungs are fully functional.  The doctor explained that the fluid was not from infection but produced due to the bodies response to the injury and the lack of strength in the muscles used to cough to clear the lungs allowing the fluid to build up.

 The physiotherapist demonstrated the exercises Jules needs to do to strengthen her upper and lower arms and suggested that her regular visitors perform the procedure 10 times on each arm three times per session with 3-4 sessions per day.  It is a big effort for Jules as it requires a lot of concentration for her to will her brain to send the signal to the muscles to do the work.  She is keen to get on with it to build some strength.

 So Saturday will be more of the same 12 hours or more breathing off the ventilator, 2-3 hours with the speaking valve and arm physio.  interspersed with coffee, meals, bathing tea and cake, visitors. using the ipad looking over the papers.  and today's treat will be to watch The Hunger Games video Darrel has obtained

 Only a short report today, but of positive progress.

Kind regards Norm

29/03/12

I arrived at ICU about midday and the difference in Jules from my last visit was amazing.  The nasal feeding tube had been removed and the "tree" which held the various drugs and dosing equipment was gone.  Jules is now only on oral Paracetamol, and Oxycodeine and Tamezapam in the evening to help her get a good nights sleep.  She was looking refreshed after having a shower earlier in the morning on a device like a pallet on a gurney.  Tomorrow they are going to try a shower in a chair, she is looking forward to that.

When I arrived she was in a sitting position with Val feeding her an egg sandwich.  She requested a latte and while Val went to get one from the cafe I fed her the rest of the sandwich and a strawberry sorbet.  She had all the coffee and a couple of grapes to finish.

 She asked me to check out her chart and see her lung X-rays.  The chart is on a computer monitor, Sam the nurse showed me the X-rays her left lung was whited out last week but is now clear.  The right lung is also clear.  Her current program is to wean her off the respirator and today was scheduled for 4 periods of 3 hours of unassisted breathing, she has handled it well but it is tiring for her.

 During the afternoon she was attended by the speech pathologist and they removed the manifold from the stoma and fitted a speaking valve, the first valve was painful and the changed it for a different type.  I will find out today if it is a Shiley phonate or Passy-Muir valve.  See details on speaking valves here http://www.hopkinsmedicine.org/tracheostomy/living/passey-muir_valve.html basically the valve opens to allows air to be inhaled into the tracheostomy tube (Stephen Hawking uses one).  The valve closes when exhaling directing up through the trachea larynx and upper airway to allow sounds to be vocalised.  Because the airway is obstructed by the tracheostomy tube ( the inflatable cuff to seal the tube against the trachea is deflated to allow the air to pass)  breathing is harder because the clear airway is reduced by the tube.  The schedule is to have Julie use the device three times per day for one hour with the duration progressively increasing as she gains strength. Her voice was quite strong and clear.  She was allowed to make a surprise phone call to Darrel, the first conversation since her accident it was a powerful moment.  When her breathing is strong enought to allow the tracheostomy to be removed she will not require the speaking valve to vocalise.

 Jules was showing off to me during the afternoon breating deeply unassisted. the monitor showed she inhaled 1187cc of air on her best breath.  A week ago she could only make about 550cc.

During the afternoon she had some other visitors,  teeth cleaning, hair brushing, treatment by the physiotherapist and occupational therapist, and was turned a couple of times.  Then a late afternoon snack of Castello cheese and smoked salmon on crackers with a cup of tea, before an early dinner of vegetable curry with extra chilli.  In between the above we found time to check Jules email on the new Ipad. before tuning in to The Biggest Loser.  When we left she was tired but watching I wouldn't be surprised if she dozed off though.  

Jules motivation and spirits are high she wants to understand all the various procedures, asks the doctors and nurses to explain things, and assists the nurses as much as she can.  I have never heard her complain.  Her goal is to be able to get back to her apartment, she is totally focused an understands that it will be hard work but she is up to the task.

 The hospital food is well very "institutional" so we are taking in palatable food for her.  With her seafood vegetarian diet getting enough protein is important for her recovery so we are taking in a gourmet selection.  There is mushroom rissotto for tomorrow.  I am getting some prawns and bugs for for Saturday.

 Altogether a very busy day, but another step forward in our journey..

Kind regards Norm

28/03/12

Yesterday, after a few more tests of Julie being fed small amounts of a variety of foods (from grapefruit segments to a sweet biscuit), Julie was given the good news that she can now eat food - whatever she wants as long as it is nutritional.  This news was given shortly before Angie arrived to visit - complete with freshly, home baked chocolate brownies. 

At the time, Nurse Sam (female) was preparing Julie for a return visit to the balcony to drink in the outdoor air and feel the natural breezes on her face.  So off the entourage went: Sam wheeling Julie in the hospital chair-bed, me wheeling the backup supply of oxygen in case it was needed, and Angie carrying the home-baked cookies.  Ang said that this was another sister who bakes: thus we have had delicious carrot cake baked by her Mum, muesli slices by her healthier sister, and now choc brownies by her other sister who enjoys a bit of indulgence.   Many many thanks to all of them.  Julie savoured the cookie complete with her first cup of tea for a long time.  I might add that Sam and Val also enjoyed a cookie!  Sam is another excellent nurse who is also a good lipreader. 

Julie was without the ventilator for 3 hours in the morning, then went back on it for an hour, then off for another three hours and so on.  It is still harder work for Julie to breathe alone, thus the help from the ventilator.

 

Julie's first shopping order was for grapefruit juice, a grapefruit, an apple, a banana and some cheese and biscuits.   I am hoping the morning nurse today finds the food.  '

Dr Vernon Hill called in to see Julie.  There could be a delay for her going to the spinal unit: it appears there are five on the waiting list, and they have a restriction on how many with tracheostomies they can have in the unit at any one time.  So we are assuming that once Julie's tracheostomy has been removed, she will have a much better chance of going to the spinal unit to start all of that hard work aimed at getting her limbs working.

On that note, I will close.  I am returning to Townsville tomorrow, and hopefully Norm will resume his updates, filling you in on the latest developments in the medical side of Julie's progress.

Best wishes, Val

27/03/12

Hi, everyone.  I think the best way to describe Julie's day yesterday is that she was in a holding pattern (as those planes are on many occasion when we are all thinking we would be landing soon).

It seems that it was decided having Julie off the ventilator for 6.5 hours the previous day was a bit too much for her.  Thus Julie's day was quiet in comparison with Monday.  The usual routines of physio, body turning, speech pathology, temperature taking, testing of Julie's memory and awareness (100% there) and others that I may have forgotten or was not aware of, were carried out during the day. 

However, there was another 'first':  Julie was taken away for her first shower bath.  I should have asked if I could go with her.  They have a large 'trolley bed' where the bed section is encased with plastic, and I assume drains for the water to run through.  Julie is laid on it, and shower roses are used.  When she returned to her cubicle, Julie gave it the thumbs up!  Although she has been getting her hair washed generally every second day, it is a tedious process, so Julie thoroughly enjoyed that part of her bed bath.

 Julie was fed a thickened syrup, again with blue dye, and as per the previous day, none of it got to her lungs, so a good result once more.  When she was offered food (in the form of a thick syrup but this time without the blue dye, Julie had barely half a cup.  Late afternoon, a three course meal arrived: butternut pumpkin soup; a main course of a pureed red vegetable and a pureed green vegetable covered with a white sauce; dessert was custard over a light chocolate pudding.  Julie had only a few spoonfuls of the soup, and then the custard from the dessert.  She ruefully shook her head when I suggested she try the pureed vegetables to see if they were, say carrot or tomato, and perhaps beans or peas.  With all of the 5-star dining Julie has experienced, who could blame her??

 The nurse on duty was great, very caring, and the best lip-reading nurse I have come across.  So she was easily forgiven when she made a mistake:  she wanted to test something to do with Julie's breathing, and said she was changing 'a' to 'b' in the tubes. Julie started gasping and was very distressed.  She whispered out to the nurse (whom I won't name) words along the lines of "Are you sure it's right?"  I started panicking as the nurse said she thought so, but would check on the notes.  It turned out she had hooked up something incorrectly, but acted quickly to change things and de-stress Julie.  Very scarey for the patient and her Mum!!

Julie has decided she wants her hair cut short.  We all kept saying "Are you sure?"  She replied yes every time.  So her hairdresser of probably 20 years (Sean from Siddha Hair Salon) is flying down from Townsville at the weekend to cut Julie's hair.  How cool is that?  Some would consider it over the top, but I know it will make the experience very special for Julie to have Sean change her hair from long to short.

Sign off time for today.  I hope it's a good one for all of you.

 Val

26/03/12

Morning, everyone.  Yesterday Ron and I walked to the Hospital, so we both got to stretch our legs.  I intend to walk again this morning.  I would like to walk home also, but leave the hospital quite late at times (eg, last night I left at 8:40 pm), so I generally catch a taxi back to the apartment.

When Ron and I arrived at the ICU, Julie was sitting up, and there was something missing: no ventilator was attached to her, and she was breathing on her own!  Julie did this for 6.5 hours before the nursing staff hooked her up to the ventilator again at approx 6:30 pm for the evening and overnight.   Julie's hair had been French braided by Amanda, her nurse for the day.  Soon after Ron and I had to leave as staff arrived to attend to Julie.  We promised we would be back soon, that we would just go over to the shopping centre to buy The Australian newspaper (the Hospital newsagency had sold out).  We were longer than expected.  Got into Lift Eleven, headed down to the Ground Floor and got out 34 minutes later: the lift had stopped at Level 1, a man entered and the lift resumed its way to the ground floor.  It reached there, but the doors refused to open.  There were 7 of us in the lift.  One young lady panicked and kicked at the door, yelling out.  The elderly hunched over lady with her had a combo walking frame/wheelchair.  We believe they were grandmother and granddaughter.  They hailed from Romania, and Ron and I were slightly concerned for both of them, particularly when the elderly lady got out an asthma puffer.  It was a bit of a fiasco with us trying to alert staff that we were stuck in the lift: when the man nearest the lift phone picked it up, all he got was a selection to press 1, 2, or 3, and was eventually told by an automated message to call back later.   Once we got our message across, we were left to ourselves.   Not once did they have someone call in to check we were okay and to reassure us that we had not been abandoned, or to find out if everyone was handling the situation okay.  We pressed the piercing siren twice for 5 seconds (it is definitely a finger-in-the-ear sound), trying to get some attention, but no-one was worried about the mental state of the occupants.  One of the men in the lift was an employee of the Hospital.  He did not strike me as someone who would take action to try to get the powers-that-be to implement a procedure which included reassuring the lift occupants.

  Julie had been wanting to go outside for some time, and later in the day Amanda told me she had been given permission to go out onto one of the balconies for ten minutes, now that the ventilator had been disconnected.  I wheeled the machine that was feeding Julie through her nostril and Amanda took charge of Julie's chair.  We managed to steer around the corners, miss all of the medical equipment, the nursing staff and one or two of the doctors.  The timing we had been given wasn't good: when we arrived at the balcony, there were quite a few staff there along with at least 20 boxes of pizzas.  A sales rep was promoting his medical equipment, and had sponsored the break with pizzas and soft drinks.  However, everyone stepped aside to enable Amanda and I to wheel Julie and her accompanying machine onto the balcony.  The balcony was closed in on the outer wall, but with extra wide louvres which were open, and through which a beautiful breeze was blowing.  I don't think the experience was what Julie had expected, but she just relaxed her head back on the headrest and drank in the outdoors and the breeze.  I hope that the next experience won't include quite so many people.  To top it all off, I understand they didn't have any vegetarian pizzas, so Julie and I wouldn't have been tempted to nick a slice or two!  Although Amanda stuck to the 10 minute time limit, it was great for Julie.

 Julie had another big step forward: she was given a thick syrupy liquid to take through her mouth, one large teaspoonful at a time.  I understand it was a lemon flavour, but this was drowned out by all of the blue dye the nurse had stirred through it before feeding it to Julie.  The dye was used to see if any of the liquid found its way into Julie's lungs - which would have been a bad thing.  Julie managed to get it all down, and there was no blue in the sputum the nurse brought up from her lungs.  Later, Julie was given her first meal of pureed apple, and once again she passed the test with flying colours.  I am looking forward to seeing what today brings insofar as nutrition goes.  Late afternoon, Karen Sanders brought in two video presentations for Julie to see.  Both were to do with her work, and these two engineering power women became engrossed in matters relating to their chosen careers.  I was the wallflower in the background - but a wallflower who absolutely enjoyed the energy flowing between them.

 To all of you who supplied contact phone numbers, email addresses, physical addresses for us to find a lipreader, I have put this on hold for another day or two.  Julie was uncertain whether she would like a stranger coming in.  I am compiling a list of the suggestions given, and will have them with me at the Hospital to take action should Julie decide I must.

 Best wishes, Val

24/03/12

Good morning, everyone.

Yesterday was Julie's best day to date.  When the doctor visited Julie, she asked (no sound, just mouthed) the doctor (a) when can she drink some water (could start sucking on ice 'now'); when can she eat (hopefully in the coming week); when could she get the trachea tube out (Doctor David said it could be another two weeks: although Julie's breathing is improving every day, she still has some help from the machine, but mostly to help push the air through until the muscles are coping better).  Basically, the machine readings are 'S' (spontaneous breathing) 99% of the time, with a very  occasional 'A' (assisted) being shown, and that occurs when Julie's body is being moved and she feels pain from the trachea tube being pulled.   The machine mostly helps push the air through until the muscles are coping better. 

Over the last two days, Julie has had a couple of visits from Ian Lacey, a UQ friend, who was in a motor accident 6 years ago, and who eventually learned to walk again.  We are hoping Julie will be inspired by Ian's success.  Russell also finally got to see Julie yesterday, after two previous unsuccessful attempts.  I have received from a number of you some suggestions to pursue finding a lipreader, and will try them out tomorrow, when the business world resumes for the week.

Julie was awake all afternoon.  She enjoys her hairwashing experience by her nurse, with able assistance from her Mum!  We didn't do such a good job yesterday, as Julie's head wasn't as close to the edge of the bed to ensure the water ran into the plastic bag that helps it run down into the bucket below.  The result was Lani and I managed to get Julie's sheets quite wed!  This involved a total change to the bedding when the hairwashing and then bed wash (Lani was ably assisted by Darrel in this function) was completed.  Sadly, though, Julie did experience some pain and discomfort to her back, which was rectified by some re-positioning.

 Early evening, one of the staff came in and said the report on the Queensland elections was on the TV, and did Julie want to watch it.  He received a very enthusiastic response from Julie, who was then propped into the best position possible for watching TV, Ron (who is here in Brisbane for the purpose of setting up our office equipment in the unit so that we have easy access to Brice Engineers Townsville office, but also to see his sister-in-law, grabbed Julie's glasses and positioned them on her, and Julie enjoyed the stimulus of the results unfolding.  I reminded Lani, who was due to finish her shift, that she impress upon her replacement that Julie would eventually need her glasses removed when she tired of the TV AND the elections.  I am pleased to report to all of you that I knew how Julie voted (postal vote before her accident), and that she would not have been disappointed with the outcome.  Many of you may not have known that it was this weekend that we were to have a Mother/Daughter/Granddaughter weekend in Sydney.  We generally do this annually, sometimes with Cali and sometimes without.  It was thus a poignant weekend.  As Cali (just turned 14) was taking her Aunty Julie's accident very hard, it was great that Kylie and Cali went to Sydney, not so great that it was rather rushed, with them leaving Townsville midday on Friday, and returning to Townsville this afternoon.   They didn't do dinner at Quay Restaurant, which had been planned for the four of us to do, but did get to see "The Hunger Games".  Both said it was fantastic.  When I told Julie they had gone to see it, Julie screwed up her face: all of us had been so looking forward to the movie being released in Australia.  I recommend to all of you that you buy the books (a trilogy series) and read them, before you see this first movie out of what will be three.  I have promised Julie that as soon as I can get it on DVD, I'll bring it down and watch it with her.

We are hoping that today, Sunday, will bring another great day for Julie.  There will of course be the pain of being moved, but we are hoping we can find further stimulus (or is it stimuli?) for her. 

Best regards Val, Norm, Kylie, Ron and Darrel

23/03/12

Good morning, all.  Yesterday could have been a good day for Julie.  Instead, it was a frustrating day for her.  What a difference it could have made if only at least one or two family members were successful lipreaders.    I was at the ICU just after 11 a.m.  I managed a short time with Julie, but then some of the daily procedures took over.    About the time that I was given the nod to return to Julie's bedside, Julie's good friend Richard Skoines had just arrived with Ian Lacey.  Ian had not seen Julie since she had been admitted to the ICU.   As Ian had had a serious car accident some years ago, and had learned to walk again, I suggested they should go and see Julie first.  I was pleased that they took me up on it.  Ian was an inspiration.  He showed me some photos taken whilst he was in ICU, and then a photo of him when first learning to walk again.  It was very inspiring.  Ian now cycles 25 kms at least twice a week.   When I returned to Julie's bedside, there were other hospital staff there for more daily procedures and checks, and once again I had to leave.  When I returned early afternoon, Julie was propped up in bed.  She stayed awake for the whole afternoon.  The trachea was still causing discomfort, but not as much as it had been doing previous to her second tracheostomy.  However, the greater discomfort was from my inability to lipread.  What could have been a great afternoon and early evening (when Ron, Julie's brother-in-law had arrived from Townsville) was spoiled by the fact that none of us was any good at lipreading.  We did, however, take the opportunity of reading out so many of your emails, excerpts that Kylie took from Facebook well-wishers, and messages on cards and flowers to Julie, who enjoyed hearing them.  I realised I have a large number of text messages also, so if today is another good day for Julie, I may read them out to her.  We eventually put on a DVD in the TV sometime after 7 p.m., and left Julie to watch Oceans Twelve whilst we headed back to the apartment.  (Today was the first day she asked us to turn on the TV.)

I have spent some time this morning trying to find online a professional lipreader who resides in Brisbane, but without success.  If anyone knows of one, it would be appreciated if details could be forwarded to me.  In the meantime, I will try today to find out what the next few days are likely to bring for Julie insofar as her ability to be able to speak rather than just mouth words.

 

I had decided not to do an update today, but then thought some of you might worry that things had taken a turn for the worse.  I'll close with thanks to all of you who have spoiled us: Angie, whose Mum baked us a beautiful carrot cake with the most delicious icing, and Angie's sister who made us some healthy but also delicious muesli slices (we do still have the containers, and will liaise with you Angie, to return them);  so many of you who waited in the ICU waiting room, and at times didn't get to go in to see Julie at all; those of you who sent flowers and other goodies: the nurses tell me Julie has the best selection of skin and hair products that they have ever seen, and this is thanks to many of you who provided them for Julie; Norm, I'm sure, would want me to send special thanks to Margie's sister Annie, who included Fantales and Minties in her box of goodies for Julie (Annie, guess who sampled quite a few of them!  (IF I have the wrong person here, my apologies, but I think it was Annie.) Russell and Colin,who have provided beds and cars; and the rest of you who not only offered the use of a car, but even offered us your houses!  A very special thank you to Fleur, who has loaned us your Dad's car, given a lovely Mothers diary to me, and supported us in so many ways: you are your Mother's daughter - and that's the best praise anyone could give you!  Harry, who is making so many great suggestions of areas for us to pursue.  Harry, when I am back at home for a few days, I hope to get myself into gear and pursue your suggestions.  Then I mustn't forget Peter Curtain, who has been in twice to see Julie and encourage Julie, but sadly she was not awake either time (perhaps 3rd time lucky, Peter?).  Peter had a similar tragic accident 30 years ago; was told he would never walk again, but he proved them wrong and even travels to PNG on business on regular occasions.   There are so many others I should have on this list, but I've got to leave soon for my long overdue haircut.  Russell and Colin, you should have dialled *51 in the waiting room yesterday afternoon.  If we had known you were there, Ron and I would have left so you could have time with Julie.  I understand you waited for an hour!  I'm so sorry I didn't think to mention to you to dial and ask for Julie's nurse - please please do so next time. 

 
I am off to get my haircut.  Meant to walk the 45 minutes to get there, as I made an appointment in the shopping centre across the road from the Hospital.  However, I have run out of time, so it looks as if I miss my exercise again (could my inner lazy self have planned it this way???)  Ron has driven out to the airport to pick up Darrel.  I know Julie will be so pleased and happy to see him.  It's a shame it can't be before 11 a.m.

Love and many thanks to all of you who are helping Julie just by being there and sending your positive vibes and thoughts in so many different ways.   Val

 

22/03/12

Hi, all.  Norm returned to Townsville on an early flight this morning (that is, Thursday 22nd), so it's up to me to keep the tradition of daily updates alive.  Margie left late yesterday afternoon, and I was all by my lonesome.  I told myself that this would test my mettle, and determined to walk the 45 minutes to the Hospital, which I felt would be very therapeutic before spending the day in the ICU unit.   It's amazing how weary one can get just hanging around.  Unfortunately, the rain that North Queensland had experienced followed me to Brisbane, and the rain became reasonably heavy about 10 minutes before I was due to head out.  Having no raincoat or umbrella (how did I know the Townsville rain would follow me!) it was a taxi to the Hospital this morning.

When I was cleared to go in to see Julie, she was sitting upright again, same as Wednesday morning.  However, she was a lot more subdued, looking rather sad.  Before I was allowed in, the nursing staff had cleaned around the trachea area.  As the hole in the neck was larger in diameter than the tube, there was quite a bit of seepage of yuckie stuff (no medical terms here, wait til Norm is reporting again :-).  From past occurrences, we knew it was very painful for Julie when they tried to clean the wound and replace the protective bandage/plaster under the 'hood' placed over the trachea entrance.  Dammit, if this doesn't make sense, please accept my apologies and use your imagination......

 Anyway, the nursing staff advised Julie that they were still worried about her lungs, even though she had had the bronchoscopy yesterday, and that they were to take another exray of her left lung.  The Xray determined that there was still a lot of sputum in the lung, and another bronchoscopy was to be scheduled for later today.  The nursing staff had a request for the ET team  to check the trachea area, as it was obviously causing pain to Julie and concern to the staff.  When the team eventually arrived quite late in the afternoon, it was determined that Julie would have the second bronchoscopy, followed by the second tracheostomy.   Poor kid, but I guess the doctors can't always get it right the first time. 

 Whilst waiting for the ET team to arrive, Julie had a couple of minor highlights for the day.  She asked me to get the puzzle page out of The Australian newspaper, so she could do the sudoku with my help (not my intellectual help - my job was to be able to identify each individual square by name the horizontal squares 'A', 'B', etc through to 'I', and the vertical sides '1', '2' through to '9'.  Julie and her good mate Margie, who would have regular weekends with Julie visiting Margie in Cairns for the weekend, or Margie flying down to Townsville to hang out with Julie, always did these puzzles together.  Anyway, today my job was to hold the paper at the right sight distance for Julie to study it, and she would eventually rasp out "B2, No. 5". I would write '5' in the appropriate square, and so it went on.  Oh, before I would let Julie start this, I insisted she look at the "Circuit Breaker".  For those of you who don't know this test from The Australian, it consists of a circle of 10 letters, with an extra letter in the centre.  One of the aims is to make one word using all 11 letters.  I said "See if you can find the 11 lettered word.  Probably all of 6 to 8 seconds later, Julie said "Communistic".  Spot on!  The nursing staff couldn't believe it.  I said "That's my girl!"  Anyway, sadly the nurses needed to prep Jules pre the theatre visit.  I was disappointed that because of lack of time, I wasn't thus able to let Margie know that Julie got the first Sudoku out'.  (Maybe tomorrow, Margie.)

 The other highlight for Julie was that Richard Skoines, a good mate from UQ Uni days, timed his visit to arrive before Julie was whisked off to theatre, and they had approx 20 minutes of conversation by Richard, and then uncertainty by Richard in trying to lipread Julie's responses.  It's always nice to know that qualified doctors sometimes have to struggle....  Anyway, they had a lot of fun trying to communicate, and it uplifted Julie's spirits.  Another good friend, Russell, arrived after work fairly late in the day, and hung out with me for half an hour, hoping that Julie might wake up within that time.  As it was after the theatre ops, she didn't.  Russell hopes to call in again Friday evening to see if he will find Julie awake.

 Not being religious, instead of praying, I am wishing upon a star tonight that Julie  will be more comfortable tomorrow, and that no further ops will be needed.  She deserves a break, beautiful person that she is.  Oh, Ian Lacey, who had a serious accident years ago, is hoping to schedule a visit to Julie also, as I believe her cousin, Dr Colin Brice also hopes to within the next few weeks. 

 Well everyone, if I hit the send button now, I think it will still be today - Thursday.  Best wishes to all of you who have so regularly sent your best wishes to Julie and our family.

Kind regards Val, Norm, Kylie and Darrel

21/03/12

How good was it to go into ICU and see Jules sitting up in bed watching a movie on TV alert and coherent.  She was not on any sedation or pain relief, the congestion in her lungs was still causing her discomfort and her temperature was up a bit. and the ventilator was still assisting her breathing.

 The senior ICU consultant advised that her left lung was full of fluid and they were going to do a bronchoscopy see http://intensivecare.hsnet.nsw.gov.au/bronchoscopy to look inside the lung and then to suction out the congestion to clear the lung.  The procedure which is performed in the ward involves anaesthesia via sedative (Medazolam).  Jules had the procedure explained to her and consented.  Prior to the procedure the senior consultant explained what was being done and stressed that he was very confident that Jules would breathe on her own without the ventilator and tracheostomy at some time in the future.  The procedure was successfully performed and we were allowed to visit her after an hour or so.

On our return to the ward Jules was very agitated and disoriented she was insisting that the staff were trying to kill her and wanted to be moved to another hospital.  Apparently this was a side effect of the sedative, she had experienced this feeling before.  Fortunately we were able to explain what had happened to her and calm her and she was settled for the rest of the afternoon.  (Note from Val:  Margie and I were in with Julie after the bronchoscopy, and experienced Julie's agitation first.  We weren't successful in calming her down.  We got Norm, and he was fantastic at reassuring Julie by explaining what had happened to her, and that it was a side effect of the sedative - the head doc just stood aside in amazement at Norm's ability to explain the procedures to Julie, and to eventually calm her down.) They do not intend to use the Medazolam again.  The intention is to keep her quiet but with minimum sedation and pain relief for the next day or so and to give her some diazepam around 8-9PM to help her get a good nights sleep

 She asked about work and to have the newspaper read to her which I did until she tired.  It was good to see her interested in the outside world.

 The OT performed the ranging exercises on her arms and wrists and fingers, these keep the muscles and joints mobile and let them measure the sensation and what movement she has.  She has sensation and weak movement in both lower arms and no sensation or movement in hands and fingers as yet.  The OT also performed cognition tests which involved asking questions to determine how her short term and long term memory is and her understanding of her situation.  These tests are done daily .  She showed good awareness and understanding.  picture recognition will be included in this procedure from today.

 Jules also had two sessions of physio to help her clear her lungs, this is hard work for her but she accepts it and works with the therapist and nurse

 Val and Margie assisted the nurse in giving Jules a sponge bath and moisturised her skin.

 She also had an ultrasound on her injured knee, this did not indicate any DVT.  The swelling and bruising around the knee is slow to subside because of the lack of mobility.  The stitches have been removed fron the laceration and it is healing well

 She also complained of a sore ear and the ENT doctor checked her ear and found no obstruction or wax.

 It was a long tiring day for her  and she was looking forward to getting a good nights sleep albeit assisted.  Val and I left about 8:20PM exhausted.

We will update you all further tomorrow.

Kind regards Val, Norm, Kylie and Darrel

20/03/12

Tuesday was a mark time day for Jules as she is being treated for the chest infection.  The congestion is very uncomfortable as it reduces lung capacity and she feels short of breath.  Her breathing is being assisted with the ventilator.  She is mildly sedated, with pain relief on demand as she requires it.

She is very aware and her spirits are low as she thinks of her future.  It is hard to think much past the ICU with all its tubes monitors bells alarms and a different nurse each shift.  The difficulty in communicating is a major frustration.  Our lipreading skills aren't that good and when she is frustrated with us for not understanding she speaks faster which makes it all the worse.

She is very interested in the goings on at work and I have been keeping her updated with the various tenders and works on site.  I have got a smile or two.

 
They tried to sit her up today in her bed but she got dizzy and her blood pressure dropped so they laid her back down.  Tomorrow they plan to try her in a chair and have some different drugs to improve sitting blood pressure.  If successful they will continue with sitting for a few days and then maybe she will be able to spend some time on the ICU balcony in the sun which should lift her spirits.

We were given a tour of the Spinal Care Unit by Dr Vernon Hill who ran the place until he retired 12 years ago and still consults with them.  He is a good friend of Peter Curtain's who was in a similar situation to Jules 30 years ago.  The unit is an amazing place the wards have generally 4 beds which will mean there will be company for Jules. The physiotherapy unit is amazing more like a workshop with all manner of equipment to assist with mobility retraining.  They have a car seat section (to learn how to get in and out of cars), airline seats, lifting and specialised gym equipment.  The occupational therapy training unit is likewise impressive the OTs train people with mobility difficulties on how to cope with and adapt to everyday living, to perform normal functions around the house and to care for themselves and give people dignity and the maximum independance.  We met many of the staff and the positive caring attitudes and level of commitment would astound you.

Vernon made a good point that one thing that the SCU does do is awaken people to latent abilities and talents that they never realised they had.  I left the unit with a good feeling that whilst the journey will be long and hard there is light at the end of the tunnel.

We will update you all further tomorrow.

Kind regards Val, Norm, Kylie and Darrel

19/03/12

Jules had an uncomfortable night she has an infection and slight fever which is increasing the secretions in her lungs and makes it difficult to breathe. The ICU consultant has decided that we will mark time for a couple of days while they treat the infection with antibiotics and increase her level of sedation to keep her comfortable.

She is frustrated with our inability to lip read to understand her requests.  Tomorrow we will try with a communication board and try to gert her to use short sentences that should make it easier for us.

The ventilator is assisting with her breathing.

We were warned that patients on ventilation are at risk of infection and that this is treatable. It is disappointing but we must expect some setbacks and take them in our stride.

Val returned from a wet few days in Townsville, I noticed on the BOM website this morning that Nelly bay has had 9 inches of rain between 9AM Monday and 5AM this morning. This should be pretty much the last major fall of the wet season.

We will update you all further tomorrow.

Kind regards Val, Norm, Kylie and Darrel

18/03/12

 When we arrived at ICU Jules was still asleep, she woke about 11:30AM apparently she had had a difficult night, she has a slight temperature and the fluid in her lungs is uncomfortable.  Her breating was being assisted 50/50 by the ventilator.  While we there the ICU doctor decided to see how well she could breathe by herself and the ventilator was switched off about midday, her sedation and pain medication had also been reduced by 50%.  She breathed well by herself for 5 hours trying to take deeper breaths to increase lung capacity and to help the diaphragm and chest muscles do what they are supposed to do.  It was tiring for her but she coped well and tried hard.  The monitor indicated that the volume of each breath increased by about 15-20% while she was breathing by herself.  They switched the ventilator on late in the afternoon to give her a rest.

Yesterday was a day of fewer visitors as too much stimulation causes her to get agitated and upsets her breathing rythym, we mostly took it in turns to sit with her, and let her have some quiet time for sleeping when she wanted it.

 All in all I think it was a positive day and I feel we have made another small step forward on our journey.

 I walked back to the unit at Kangaroo Pt in the afternoon, it took 45 minutes, to prepare a cooked dinner for us.  Mundane things help with a feeling of normality.  Ky and I both fell asleep by about 8:45 in front of the TV.  Hospital visiting and waiting is very tiring.

 We will update you all further tomorrow.

 Kind regards Val, Norm, Kylie and Darrel

17/03/12

We arrived at ICU to a Jules who was much calmer this morning. The nurse advised she was breathing well with the assistance of the ventilator.
 

After a couple of hours and a number of visitors she tired and became agitated and breating became difficult for her.  She had some quiet time during the afternoon and settled down and when Kylie and I were allowed back in about 5:30PM she was calm again.  She is frustrated at our inability to read her lips and communicate with her so time in with her is mostly quiet talking to her touching her forehead and telling her to breathe slowly and deeply as shortness of breath upsets and stresses her and she loses the rythym of her breathing and the ventilator takes over.  She is still on some small quantities of sedative drugs to calm her and help her rest at tmes through the day.  She has a TV in the ward and it was on sometimes during the day, she isn't really able to watch programs but I think the presence is comforting.

One thing I was able to lip read was "why am I here" and I explained to her about her accident she had no recollection of it or the events that followed.  It seemed that the surgery, anaesthesia, morphine and sedatives had caused some amnesia.  Ky and I could then understand her concern and confusion as to where and why she was in the ICU.

 The nurse today was very good at explaining things about Jules treatment and how things may be expected to progress.  She said Jules was likely to spend weeks in ICU before being transferred to the spinal unit and that she would arrange for us to meet with the Spinal unit staff early next week for a briefing on likely scenarios.

 
Kylie and Darrel are amazing they are so caring and compassionate.  Ky is so organised and logical in thought and planning, she puts me to shame.  The visiting is stressful and tiring for us all after a day in the ICU waiting room we are all totally exhausted.  I am trying to make sure we eat properly and at least have a good healthy breakfast and something substantial at night.  It would be so easy to eat junk food on the run but would do none of us any good

 Fleur Thresher brought her dads car down today and we have found our dedicated parking space in the complex.  It is just a little bit more independence.  Darrel has had the use of a car from Russell and Colin and has been collecting us from our accommodation and chauffering us about, this has been a great help.  We have had so many offers of all forms of help and assistance our hearts are warmed by the the generosity and compassion of Jules friends.

 Today was one step of many on a long journey.

 We will update you all further tomorrow.

 Kind regards Val, Norm, Kylie and Darrel

16/03/12

We arrived at ICU and were told that Jules had the tracheostomy earlier in the morning.  The procedure took about 2 hours in theatre, see details about tracheostomy (trachea = windpipe and stoma = hole) here http://www.nlm.nih.gov/medlineplus/ency/article/002955.htm We are not sure how long she will require the ventilator.  The nurse advised that the procedure went well with no problems and that Jules breathing was good.  By late afternoon the nurse advised that Jules was breathing 50% by herself with 50% assistance from the ventilator.  The secretions from her lungs require suction to remove them as before.
 

After the tracheostomy Jules was taken of the Profenol and Medazolam sedative drugs, she is still on morphine for pain relief, and was pretty much awake and aware when we were allowed in at about 11AM.  One or two of us remained with her most of the day.  She was angry and crying a lot during of the day, going between between wanting us there and wanting us out, being angry and sad. She was also delusional at times throughout the day and sometimes thought we were all out to get her, especially the nurse at different times.  It was very confronting for all of us.  It is hard to hold it all together all the time.  We have all had our times when we can't handle it but mutual support gives us the strength to go on, we can't imagine what it is like for Jules.  fortunately there is a pub close by,  Darrel and I took time out for a couple of beers late this afternoon to release some of our emotions, it was good for us both, he is Julies rock.

 During the day she was attended by different physiotherapists, one to massage and manipulate her hands and fingers and another to manipulate her chest to help her expel the lung secretions.  The ICU nurse said she will be visited by a speech pathologist to plan treatment to help her speak and to assess her swallow reflexes so they can decide when she can take nourishment by mouth.

 Because the air enters and leaves her lungs from the stoma which is located below the larynx ther is no air passing the larynx and she is unable to speak audibly.  Her lips move and we are trying to read them but we are not very good at it and it is frustrating for her to want us to understand what she is saying and we are not getting it.  By late afternoon she was whispering such that it was possible to pick up some words if one listened close to her mouth.  Hopefully we will get better lip reading skills and Jules will get better at whispering so communication will be easier.  When she wanted visitors out the message was easy to lip read the two words F*** **F.  We also have a white board and felt pens that we can write messages on and show to her.

 We are getting set up in the apartment and now have a printer and good wireless modem access to the office and internet.  I cooked the first meal here for Kylie and myself last night.  It helps to feel a sense of order.

 We have embarked on the first step of a long journey and are really looking forward to her transfer from ICU to the spinal unit  when she is able.

 We will update you all further tomorrow.

Kind regards Val, Norm, Kylie and Darrel

15/03/12

On Thursday Jules was maintained on heavy sedation (Medazolam) to keep her comfortable and morphine for pain management.  She looks beautiful, comfortable and peaceful to look at her lying in bed asleep you would never believe she was injured except for all the ICU equipment.  The last drain from the posterior neck incision was removed, the wounds appear to be healing well.

 They were unsuccessful with the tracheostomy as with her neck rigid between C4-6 they couldn't position the tube low enough in the trachea.  The operation is being scheduled in theatre with the ENT team, hopefully it will be performed on Friday.  After the unsuccessful attempt her feeding tube was reinserted so they can continue giving her nourishment.  After the tracheostomy is functioning they will reduce the level of sedation and wake Julie up.  In the meantime she is comfortable and in the best of care.

 There isn't much else to report, it is a matter of wait and see.  We are getting many messages of support from family and friends which are a comfort and we look forward to the day when Jules will be able to read them or listen to us reading them to her.

 
We will update you all further tomorrow.

Kind regards Val, Norm, Kylie and Darrel

14/03/12

Yesterday was as expected for Jules, heavy sedation to keep her comfortable and morphine for pain management.  She looks comfortable and peaceful.  There was another display on her monitor this morning a blue line showing veinous pressure which allows them to monitor her fluid levels.  She has been looking very swollen and puffy due to the amount of IV fluids she has been given, I think the condition is called oedema.  It is common in women during pregnancy and manifests as swollen ankles.  The drugs she is having to increase blood pressure helps her kidneys excrete the excess fluid.

 The neck collar and dressing on the anterior surgical incision has been removed.  The incision is surprisingly small less than 75mm and appears to be healing well the wound is closed with metal staples rather than sutures.  I think they will remove the last drain from the posterior neck incision tomorrow.

 The ICU Doctor advised they are going to perform a tracheostomy early Thursday afternoon in the ward under general anaesthetic.  If it is successful they will remove the ventilator tube from her throat and connect it to the tracheostomy, this will remove the main source of discomfort.  If they are unsuccessful then the procedure will be performed on Friday in theatre.  After the tracheostomy is functioning they will reduce the level of sedation and wake Julie up, hopefully on Friday or Saturday.  My guess is that she will be in ICU at the very least most of next week until her breathing function improves.

 Kylie arrived last night and Val is returning to Townsville for a couple of days this evening.  we are setting up a roster so that there is always one or two of us in Brisbane so Jules gets plenty of visitors and support in what will be a very trying period for her.

 We will update you all further tomorrow.

 Kind regards Val, Norm, Kylie and Darrel

13/03/12

More of the waiting game on Tuesday, Jules is sedated and comfortable.  They are turning her every couple of hours to prevent pressure spots developing on her skin.  The IV entry was moved from her groin to her neck today.  The ventilator is breathing easily for her.  Apparently the sedation has the effect of lowering blood pressure and this can effect kidney function so they have other drugs that maintain blood pressure so that it is up around 120/55.  After the injury and during the surgery IV fluids are given and these take time to be excreted via the kidneys.

 The hardest thing for me is when I see Jules first every day, the picture of her I have in my mind is her smiling and sitting up in bed. Then I walk into her room and there she is laying comatose on the bed wired up to so many monitors and breathing by ventilator. It is heart breaking, it helps if she can acknowledge my presence, but that is rare at present.  They are keeping her sedated for another couple of days before they bring her round so her breathing capacity can be assessed. I so hope that she will be able to breathe on her own, I think that would lift her spirits as well.

Wednesday will be another sedated wait and see day it is frustrating to feel so helpless to do anything.  The saying "patience is a virtue" is so true we will remain virtuous and supportive of Julie in her hours of need.  This is made easier by all the amazing support from all of you her friends and our friends.  Please keep Jules in your thoughts the recovery and rehabilitation will be a long process and she will need all our help.

We will update you all further tomorrow.

Kind regards Val, Norm, Kylie and Darrel