Star date 24 April 2012

As dictated by Julie to Norm

Hi everyone firstly thanks to you all for your well wishes emails presents and visits.  After a difficult week last week and frightening tracheostomy tube change this morning I am feeling surprisingly well.  The days go quickly particularly those with visitors and even more so with scrabble playing visitors.  I am still in the acute section of the SIU and likely to be so for the next fortnight - assuming I can cough up enough gunk to satisfy the physios and they will let the tracheostomy be removed and let me go to the main section.

I would like a room by myself but apparently the only way to get one is to contract an infectious disease, I am considering bribery.

Movement of my left arm has improved and I can now lift it off the bed, which is very pleasing.  Unfortunately the right arm has not progressed as well.  I have finally have had an ultrasound on my right arm/shoulder which has revealed nothing except That it should have been X-rayed first.

Norm and I are sitting outside on the balcony but we can't quite see the Aramax roof on the car park.  It was one of the earlier Aramax roofs that we did.

Out of five beds in the acute ward three are from Townsville and Home Hill and another is from Daru in PNG.  This shows the need for a spinal unit in Townsville.

Julie is sick of this now so she said to sign off.

18/04/12

Darrel organised a bbq last Saturday on the verandah at the SIU, here are Jules Darrel and Norm after feeding our faces.

Jules was very happy to see Darrel.

Saturday 14 April 2012

It is Julies third day in the acute care section of the Spinal Injury Unit (SIU).  She is in the acute section because of the tracheostomy which requires extra nursing care, dressing changes and the need to suction to clear phlegm from her lungs.

On Thursday Jules was put in a chair using a portable hydraulic hoist that is much quicker than the manual handling method used in the ICU.  Once in the chair she was taken on a tour if the SIU.  Through the various wards which had 1 or 4 plus the 6 bed acute ward.  The one bed rooms are generally used for infectious patients.  There is a kitchen where the meals for the patients in the SIU are prepared and a communal dining room where people can mix socially as well as dine.  There is a physiotherapy gymnasium where Jules will have intensive treatment to retrain her limbs.  The occupational therapy room focusses on teaching skills that will enable patients to return to the community.  Patients are trained in skills to use eating utensils to feed and care for themselves.  The staff are all very friendly and positive, the place has a good feel about it.

Kylie arrived later on Thursday afternoon, she is such a calming influence.  Jules was getting distressed as the doctors had indicated they may need to change the tracheostomy tube.  Based on Jules memory of the previous change the process can be very painful.  After the doctors had left Ky suggested that Jules prepare a list of questions for the doctors to get them to wexplain the risks and benefits of a change.  This was discussed with the doctors the next morning and any change will be delayed while they monitor the situation.

Julies ward is much more relaxed than ICU with little of the procedures and night noises that prevent or interupt sleep.  She has had a good nights sleep every night she has been in there.  The air mattress she is on evenly distributes pressure to her body minimising the risk of pressure sores developing.  On the air mattress she only requires turning once during the night.  Jules has met and chatted with with the other patients in her ward, things are much more friendly and "normal" than ICU.  Skype is wonderful as she can have face to face conversations with friends, she speaks to Darrel most days and has been able to chat with Larissa and hopes to chat with Margie next week.  We are going to check out an iphone 4G with Siri voice control next week.

Darrel arrived late on Friday evening and we just made it to the SIU before the doors were locked for the night, Jules was very pleased to see him.  He had organised with the staff to have a Saturday barbeque on the verandah.  The SIU has a couple of BBQs and tables and chairs on the verandah for patients and family to use.  We wheeled Jules bed outside about 1:30 and cooked ate and chatted for over three hours.  Being in the sun and breeze after over 5 weeks indoors was a luxury.  Two of the other patients joined us and tried some of the food and chatted about their experiences.  Gail had her accident 41 years ago and lives in the community, she was back in the unit for treatment of a pressure sore.  She was excited about going home before the end of the month after five months treatment.  Ken from Mackay, the other patient who joined us with his wife was driving home 21 months ago rolled his car and woke up in hospital and hasn't been home since.  He expects to go home soon.  The OT staff have helped with modifications to their house so he can live there.  I took some pics but haven't figured how to download them from the camera Ron will help me when I return to the office on Thursday then i will post them here.

Julie is in a very positive frame of mind and looking forward to getting the rehab regime going next week.  In the meantime we are doing the wrist, finger and arm exercises that the physios and OTs have trained us to do, we can feel the improvement in strength and control.  The improvements are small increments but everyday it is better.  She intends to participate in the blog with the assistance of visitors to help with the typing.

We will try to post daily, watch this space

Norm

11/04/12 - SIU

Julie called this morning to say that she was being transferred to the Spinal Injury Unit (SIU) this today.  She has done 3 days off the ventilator with the speaking valve on demand.  So it was up to the hospital to assist with the transfer by moving all her personal items down to the SIU, it is amazing how much we have accumulated in the 34 days Jules has spent in the ICU.  Before we left the ICU the nurse said she thought that Jules would have the tracheostomy in for another one to two weeks.  She is really looking forward to the day it is removed.

The move disrupted the daily routine and as a result lunch wasn’t taken until after four o’clock.  With only a cup of coffee since breakfast Jules was very hungry and devoured a meal of sushi followed by fruit juice and a cup of tea.

The transfer/admission procedure into the unit took a couple of hours with interviews with doctors, nurses, and therapists to go over Jules history.  The ward has six beds and there appear to be three or four nurses plus assistants on duty at any time.  It is not the one on one attention of the ICU.  The mattress on the bed is air inflated and designed to minimise pressure problems and patients do not require turning so frequently they can go up to 8-12 hours.  This will help in getting a good night’s sleep.

Visiting hours are the same as ICU from 11AM until 8PM

A big step forward is a mouth control unit for calling the nurse and operating the television.  Jules picked up very quickly how to switch on, change channels and adjust the volume.  She had a good chat on Skype with Darrel.  We checked and replied to her email read the paper and did the crossword.  I had two powernaps in the waiting room while she was in discussion with the medical staff.  The waiting room is much more comfortable than the ICU room.

With the bed inclined for her to be in the sitting position she gradually slid down the bed during the afternoon until her feet reached the foot of the bed.  The pressure of contact with the end of the bed was hurting.  They are going to get a longer bed tomorrow.  She still has some shoulder pain from the physiotherapy although it is not as bad as it was in the ICU.

Dinner was interrupted by the charge nurse telling us that Jules bed was to be moved to the other side of the ward as there was another admission.  The patient with MRSA, needed to be isolated in the ward.  This distressed Jules as she was concerned about the potential for infection.  I have since checked on the internet and it seems that the hospital has very good protocols for MRSA management.  At PAH the infection rate has been falling over the past twenty years.  Apparently MRSA is a problem in hospitals worldwide; in the developed world it is generally well managed.

After the bed was moved Jules settled down, she was tired and had some discomfort during the day with all the speaking, coughing and adapting to the new regime.

Tomorrow we are hoping that the rehab physiotherapy will start in earnest.

Norm

11/04/12

Just a quick one this morning. Ron typing for Norm... :). I have been told that Julie has now been off the ventilator for 3 days and is being moved to the spine ward this morning! I'm sure Norm will provide more detail when he finds time later today or tomorrow morning.

Ron

J&L Scrabble (09/04/12)

For those who may be interested, Julie and Larissa managed to fit in their third game of scrabble just before Larissa had to catch the plane on Monday afternoon, 9/4.  It was a fitting finale: Larissa scored 377, and Julie manage to pip her at the post with 380: a very close game!   Val

08/04/12

Julie had a game of scrabble with Larissa on Saturday where Larissa had a positive win, and then again yesterday (Sunday) where Julie had a positive win.  I'm not sure if they will get the decider in today or not, as Larissa needs to leave the hospital reasonably early in the afternoon to catch her plane back to Townsville.

Julie had two firsts yesterday:  she spent some time out in the secured outdoor garden area within the hospital grounds with her nurse, Larissa and me.  Whilst there, she had her second 'first' since her accident: part of a bottle of Diet Coke! 

Julie also enjoyed yesterday a visit from Karen Sanders and from Ange (her friend with the mother and sisters who all cook wondrous foods).  Speaking of foods, Larissa and Celeste made some delicious (I tasted it!) celery and potato soup a couple of days ago for Julie, and yesterdary Larissa used David Herbert's recipe from The Weekend Australian Magazine for Coconut fish curry.  Julie declared it "yummy", and so did Larissa and I when we returned to the unit.  Thank you to David Herbert AND to Larissa!

All in all it was a good day, which could have been better if Julie wasn't from time to time needing the nurse or the physiologist to help her clear her chest of phlegm, etc.

Early morning yesterday before going to the hospital, I visited a good friend, Evelyn, who has been battling lung cancer for 18 months now (she has never been a smoker).   Evelyn has been a successful artist both here and in Malaysia (where she and her family have lived and worked for many years), painting from a young age.  In 1987 she got breast cancer and had a mastectomy, which included having a large number of nodes taken from her right arm.  Eventually Evelyn lost all feeling in this arm and was bereft at not being able to paint.  She decided she could not enjoy life if she couldn't paint, so taught herself to paint left-handed: you would all be surprised at the magnificence of her paintings, both from her right hand and then her left hand.  With this lung cancer, she eventually had to give the painting away.  However, the artistic nature would not let things be: she took up 'scrap booking'.  I didn't even know what it was, but had the pleasure of seeing her three books she has done.  They too, are a work of art - I was overwhelmed with what she has created.  I told her in only one or two generations, that I was sure they would make huge money for contestants on 'Bargain Hunt' (although I doubt family members would ever dispose of them).

The human spirit is amazing.  I have seen it shining brightly in both Julie and Evelyn.


Best regards, Val

06/04/12

Just a very short email today. I promised myself this after reading my email this morning that I sent last night! Julie and Naween had their return scrabble match. Naween had a second win. Although he increased his lead - I think he was somewhere between 30 and 40 in front of Julie - it was a good game by each of them. See the board set-up that we created.

Larissa and Naween left mid-afternoon to go to Celeste and Shane's house for a BBQ. Julie had a long and enjoyable visit from Karen Sanders, and sometime after Karen left, she had an hour's nap. When Julie awoke, she had some phlegm or sputum in her throat that was hard to clear, and it was uncomfortable for her. I am hoping that it doesn't stop Julie from getting a decent night's sleep.

Larissa and Naween arrived back from the BBQ approximately 7:30 pm, and we left Julie hopefully in peace soon after.

Ron and Kylie have suggested that a blog be created sometime soon, rather than doing daily emails. This allows more flexibility and allows people to share comments and photos. I am happy for them to set this in motion. We will keep you informed.

Best regards, Val and family.

05/04/12

Hi, everyone (yes, I believe I have added you all in, but did so as BCC's). I have always felt we should have done that from the start to preserve people's privacy, should they have required it. My apologies to any and all of you who would have preferred this method from the start. It's probably not a problem, as you all have at least one thing in common: your wonderful concern for Julie. 

Today was probably a big milestone for Julie. It was not necessarily a medical milestone, but it was certainly an enjoyable, personal one. But I get ahead of myself. For Julie the early hours of the day were frustrating: she decided to forego her shower bath which takes a lot of time in preparation and production, instead opting for a much quicker body wash in her room. This decision was based on getting through the myriad of morning procedures as quickly as possible, as Julie had an important date for late morning. Sadly, as I am sure often happens in hospitals, her time schedules were totally out of whack, and she eventually wasn't free of daily procedures until well after noon. However, eventually Julie was propped up in her mobile chair and wheeled through the ICU to arrive at the doors of the balcony. It was a small entourage that accompanied Julie: Sam, her wonderful, caring nurse, Larissa, her friend ever since they met in Grade 1 at Belgian Gardens School, Naween (a scrabble friend) and me. And there, friends, is the magic word: scrabble! Julie was to have her first game of scrabble since her accident: and what a worthy opponent. I understand Naween has been rated as No. 1, 2 and 3 in Australian scrabble over the years, and believe he came 3rd in one of the international scrabble games in recent years.

Picture the scene: Julie is on the balcony in her hospital bed chair, up high and tilted to approximately a 60% angle. In front of the bed chair, we drag a square table for four. On top of the table, we place a sturdy chair. On the seat of the chair, we place the circular scrabble board, propping it upright against the back of the chair. It seems stable. We check with Julie - can she see the board? Answer is "Yes". We check with Naween: is he okay to play standing up at the side of the table? Answer is "Yes". Countdown begins: Naween draws a tile from the bag, then Larissa draws a tile for Julie: outcome, Julie gets to go first. Val (me) draws 7 tiles for Julie and places them on her rack. Naween draws 7 tiles and places them on his rack. Julie instructs Larissa to play "Fever" at D8, and the game commences. (See photo attached: Larissa marked each square down the side of the board from 1 to 15 down the left side of the board, and each square across the top of the board from A to O. Thus Julie was able to instruct Larissa or me to play a word at, for example D8.) So you could say it was three against one: I drew the tiles for Julie (sometimes very badly), Larissa kept score for Julie and also tile-tracked, which can be so important in the end game, and Julie determined what word was to be played, and where. The one disadvantage to Julie was that she couldn't shuffle her tiles on her rack to look at the combination in different ways to try to find the elusive 7 or 8 letter words.

Most of the really unusual words (Mbira, Atlatls - the blank is an 's' - resilins and copay were played by Naween). Julie challenged all of them. Larissa had the program Zizzyva (spelling anyone?) on Julie's i-pad, and checked all challenges: the four words were acceptable words in International Scrabble. For some time into the game, it looked as if Naween was going to slaughter Julie. Luckily for Julie, he played two words that turned out not to be acceptable, and later in the game Julie played 'ranking's for a score of 98. The final score was 406 for Naween and 393 for Jules. She was delighted to have lost to Naween with just a 12 point difference. For those who don't play scrabble, the isolated 'R' on the edge of the playing area was the only letter left unplayed at the end of the game.

A return match challenge has been issued for tomorrow - Good Friday. This time I will take a photo of the set-up. Sam, Julie's nurse and another nurse who was on the balcony with us, were very impressed with the rotating scrabble board and the grooves to keep the tiles in place. Julie and I have promised to donate a rotating board with grooves to the hospital on my next trip here, as we have a couple of extra ones in Townsville.

The downside to today was that Julie didn't do anywhere near as much physio as she had done in the previous few days with Norm's able assistance. It had been such a busy morning for Julie, and then the scrabble set up, game and dismantling took much of the afternoon.

Norm had purchased a juicer on Wednesday afternoon, and Julie had 600mls of fresh pineapple and orange juice (I had the rest, Norm and it was deliciously refreshing). I meant to buy some ginger to juice pineapple and ginger in the morning (Julie and I both love it), but forgot to get it. Norm had also deboned some flathead, ready for me to cook for Julie's lunch today. Julie's 'starters' were some of the marinated and smoked mushrooms plus one or two green stuffed olives brought to Julie by friends. She had the fish with an Asian style salad with some gourmet seafood sauce added. It was one of those very rare occasions that Norm had left a number of small bones in the fish fillets. I was feeding Julie, and on about 6 or 7 occasions there was a "mmn mmn" noise from her, which indicated she had managed to extricate a bone in her mouth and was holding it between her teeth, waiting for me to pluck it away. Some of you may know that flathead is a very difficult fish to debone, and it is easy to overlook a few of the very small ones. Julie nevertheless enjoyed the fish immensely. She then had a strawberry, raspberry and blueberry salad with Greek natural yoghurt. The yoghurt replaced the usual icecream as it was found to be on the list of ten foods that were high in protein (along with quinoa, almonds, salmon and tuna, if anyone is interested).

PS: I just looked online for definitions: mbira is an African musical instrument, aso known as a 'thumb piano'; atlatl is a throwing device; resilin is an elastic substance of cross linked protein chains found in the cuticles of many insects; and copay is a copayment.

'Night all, sweet dreams to my beautiful daughters and granddaughter - well, to ALL of you!

Val

A PS to last night's update: I forgot to say that when the game finished, we dismantled it and returned tiles and racks to their bag. I mentioned that the scrabble game would be a large part of Julie's update for the day. Naween said "We should have taken a photo of the board to attach to the update." "Dammit, why didn't I think of that", I lamented. Naween replied that he would reconstruct the game on the board. Me: "What? Come off it, you'd need a photographic memory." Well, perhaps he has one, as he reconstructed the game in minutes - and that was without looking at Larissa's diligent recording of each word. (Naween just recorded the scores on his sheet.)

So, thank you Naween: but most particularly, thank you so much for making Julie's day. I can't see an email address above that might be Naween's. Could someone please forward the update and this email to him?

I have added on Fiona Powell's to the list. Fiona, Norm asked me before leaving Brisbane to forward a big "Thank You" for a magnificent supply of cheeses for Julie. As there is just a tiny refrigerator in the ICU to hold all patients' food, Norm left a couple of cheese there and brought the rest back to the unit we have rented. He intends to replenish the cheeses as the ICU stock is eaten.

04/04/12

Well today was a marking time day for Jules, after a night when sleep was more broken than usual she was very tired.  The session with the occupational therapist was difficult as a couple of new exercises for biceps and triceps required intense concentration and huge physical effort.  Her shoulders were aching after and she was exhausted.

 Jules has low blood pressure upon rising from a lying or sitting position which can cause dizziness and lethargy and is controlled with the use of a "binder" which is like a corset restraining the abdomen.  Jules felt the binder was tight yesterday and inhibiting her breathing.  This phenomen is called  is called Postural (Orthostatic) Hypotension.  Postural hypotension after a spinal cord injury (SCI) occurs since the blood vessels do not decrease in size, in response to lowered blood pressure, due to the altered function of the autonomic nervous system. Because of this, blood pools in the pelvic region or legs while she is in a sitting position. Postural hypotension usually occurs when a patient is initially placed in a wheelchair or on the tilt table.  This can be prevented by wearing elastic hose and an abdominal support (binder). Jules first had postural hypotension when they transferred her from her bed to a chair.  The nurse laid her back down and the symptoms were relieved. This action increased her blood pressure and the dizziness quickly disappeared, the binder minimises this .

Jules was off the ventilator for most of the day wearing the "swedish nose" or the speaking valve.  The speaking valve was only off when doing physio or resting.

 Kind regards Norm & Val

03/04/12

More routine today.  Tuesday was another good day.  Jules was off the ventilator for most of the day was only connected whilst sleeping at night, even then the ventilator is only assisting her as she is mostly breathing by herself.  She is allowed to use the speaking valve and only had it off when doing physio as the combined effort of speaking and doing the exercises is too tiring.  Margie and I did three rounds of physio on her biceps and triceps.  Her lungs are improving and the need for suction in reducing, coughing is still a big effort.

Today's highlight was a visit from VR mobile beauty therapy for a manicure, pedicure, eyebrows and other things girls do.  It was done on the balcony and combined with yum cha lunch brought in by Larissa and Celeste.  The nutritionist has said we no longer need to keep a record of Jules food and liquid intake  as now she is eating normally.  The fresh fruit juice is a hit and we are getting a juicer for the unit so we can process pineapples.

Jules had 88 emails in her inbox yesterday which we attended to with me typing the responses as dictated by Jules. Then a read of the paper.  We will try to get the ipad to access the internet so she can check on her favorite websites. 

Dinner while watching Biggest Loser then Yes Minister and something else she was wanting to stay awake until around 10:30 and hoped to get a good nights sleep after then

Again clinically there is not much to report which is good news.

 Kind regards Norm

02/04/12

We are getting into a routine at the hospital as Jules continues taking small steps forward.  Monday was another good day she was off the ventilator for 17 hours and was only connected whilst sleeping at night.  The nurses are letting her use the speaking valve as she wishes on the understanding that if she tires she will tell them so they can remove it. Margie and I did three rounds of physio on her biceps and triceps.  Her lungs are improving and the need for suction in reducing.  I think that when she can go without the ventilator for a few days straight they will consider removing the tracheostomy which will be a real milestone.

Dr Vernon Hill and Dr Polly Tie from the spinal unit stopped by for a chat with Jules and I think to gauge her progress to get an idea when she will be ready to transfer to them.

 Larissa and Celeste are providing food for some meals and Jules is enjoying this.  She is eating a normal diet with plenty of fruit and fresh fruit juice and enjoying it.  You could never call the hospital food "normal" in any sense of the word.  I wonder how people without family and friends to visit and bring food survive.  Visitation is so important for morale.

 Yesterday Kylie forwarded the photos of Jules before, during, and after the hair cut.  You will see from the pics how good she looks, she isn't sick at all but a healthy person with a spinal injury.  Today Val has arranged for her to have a manicure and pedicure she is looking forward to this.  If possible we will get her to the balcony for a few hours today.

 Today again clinically there is not much to report which is good news.

 Kind regards Norm

01/04/12

A really good day for Jules today, she was off the ventilator all day and was only connected whilst sleeping at night.  She used the speaking valve for about three hours in total and is coping with the extra effort required to exhale and speak very well.  Darrel, Margie and I helped with a couple of rounds of physio on her biceps and triceps.  As yet she is finding the simultaneous use of the speaking valve and the physio too hard, so the valve is out while the physio is performed.  Plenty of visitors two and a half hours on the balcony.

I have been doing some reading on tracheostomy management see http://ceaccp.oxfordjournals.org/content/8/1/31.full it has sections on how they assess her swallow reflex, the process to wean her off the respiratorand how they maintain the the humidity levels to prevent lung problems.  It is good to have an understanding of the procedures.

 The highlight of her day was a hair cut by her Townsville hairdresser "Shorn", he had a trial run on me (a number one cut) before working on Jules.  She now has a stylish short cut which will be much cooler and easier to maintain and most of all won't pull when they are moving her.  There were some pics taken of before and after but they haven't popped up in my in box.  I will try to get them today and include them with tomorrows update.

The ICU routine is very busy and it is difficult to find time to put in the extra physio.  Darrel gave Jules her dinner (soup)  and set up the TV and they watched Biggest Loser and he left about nine to walk back to the apartment.  It has been great for both of them that they have had some quality time together this weekend.

Jules strength is increasing each day and her resolve is very strong.

 Today again clinically there is not much to report which is good, each day is another step on the road to recovery.

 Kind regards Norm