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