30/05/12

Hi folks, it has been a busy week since the last blog, The biggest news is that I have had flickers of movement in my left thumb, which is very positive!  Much of my OT sessions have been spent learning to use a computer with an overly large mouse ball or stylus.  We have been doing this with my right hand with the arm in slings to remove the effect of gravity.  It takes me about half an hour to type my first name.  The sessions have not been long enough to complete "Julie Brice"!  But we will get there.  I might have done better if I hadn't been so distracted by another patient and OT learning to play Othello.  I just couldn't help myself giving advice on strategy -:)

On Tuesday I was fitted for a power chair which will replace my other new wheelchair.  Tomorrow I get to drive the thing - BEWARE -:). Once the power chair is properly finalized we will fit and cut the medical grade sheepskin that Kylie sent to me last week.  (Thanks again, Ky.)

Norm and I continued our forays out of the hospital last week.  These included a trip to the Public Cafe where I was able to drink coffee without assistance as the new chair is so high, and a trip to the hospital car park to inspect the Aramax roof which I designed a few years ago.  The roof appears fine but I was far more focused on the ground when Norm left me parked with my back facing a set of stairs.  The rational part of my brain trusts the brakes on the wheelchairs, it's just the irrational part keeps screaming "you're going to fall down the stairs and die!!"

Norm has been feeding the bush turkey ('Ned' or 'Christmas', whoever you are talking to).  The turkey comes peering through the glass doors to see if he is around to feed him more grapes.  Norm has been letting him get a little too close on occasion: the turkey managed to draw Norm's blood over the weekend.  Despite being in a hospital there were no bandaids to be found :-)

It was lovely to see Darrel on the weekend, he brought down Moreton Bay bugs which we ate on the verandah with salad on Saturday.  On Sunday Norm Darrel and I ventured out to the local pub for lunch, the Norman.  The Norman is a short 15 minute roll from the hospital and boasts of being Brisbane's worst vegetarian restaurant.  I had the S&P calamari and a diet coke.  The doctors have said I am allowed the odd glass of wine but I have decided not to have any until I can pick the glass up myself - now there's an incentive! 

While Norm drove Darrel to the airport I had a game of scrabble with Martin, with him picking up my tiles.  I copped a thrashing so sacked Martin and got Norm to select better tiles for me for the second and third games.  Val has also been picking great tiles for me this week in a game against Quentin, who is back from France.

Wednesday afternoon is normally free for me (which means more scrabble) but I lost most of the afternoon today getting an MRI done on my shoulders.  Hopefully they will figure what is causing the pain and give me a magic pill to fix it, rather than a dirty great cortisone injection!

 

I am looking forward to seeing Darrel and Ky this weekend.  We may attempt a trip to Kangaroo Point in a taxi, depending on my power drive skills (yet to be learned).  Next Tuesday is the big meeting with family, doctors, physios, OT's etc etc so I get to have a long weekend with everyone which will be lovely.  I will update you again after the meeting.

xx

Ward 5 SIU

Oops found it again phew. Now settled into ward 5 a four bed unit with three other ladies. Monday was a milestone as I was able to go upstairs to the Public Cafe for my coffee. Val was wheeling me as Norm got out of a taxi and met us on the way. This was my first trip outside the ICU and SIU other than the verandas since my arrival at PAH on March 8, it felt good! I am now on regular OT and Physio for an hour each per day on weekdays except Wednesdays. The OT is to work my arms for feeding myself. It is bloody hard work as the brain, nerve and muscle interaction has to be relearnt. My left arm has improved but lack of control tends to result in the odd smack in the face with a strawberry. The improvements are incremental but progress is definite and positive. My right arm has not had the same degree of work out due to the nerve pain in my shoulder, but this has improved and we are doing some work with it. I think is is about 3-4 weeks behind my left arm. After OT on Monday the physios measured me for a new wheelchair, the old one is uncomfortable. After measurement some arm exercises and passive frog poses flat out on the mattress then back into the chair. Tuesday it is really a slow start in the mornings one bathroom is out of action being refurbished, and they are understaffed, as a result I am not out of bed and showered until after noon. I am trying to get some priority for an earlier start on the weekends. Another trip to the Public Cafe for coffee followed by OT and physio to try the new wheelchair but it needs more adjustment the backrest is uncomfortable and the footrests are too high so my knees are under my chin. So back into the old chair, at this rate the new chair may not ready before I get my electric chair, not the one used for executions in the US, but a power operated one that will give me more independence once I learn to drive it. Be afraid, very afraid. More adventure down to the Buranda shopping centre in the chair to book a manicure and facial. Unfortunately the path into the beautician was too narrow for the chair. The manicurist was booked for 4:30 tomorrow. Then back to the SIU. It was good to leave the hospital precincts Wednesday same old same old slow start Norm went to a meeting at the Gold Coast and Olga came for scrabble. She had to pick my tiles and put them on my rack, they were in no particular order and some upside down. Despite this challenge I beat her by convincingly. Nice tile selection Olga! After Olga left we went to the Public Cafe for a latte and cake. Then it was off to she shopping centre to get some new tracky daks and the manicure. Candy apple red they look very smart. What to have for dinner check out Woollies decide scrambled eggs with tomato, chives, chilli and Parmesan cheese cooked in the hospital microwave yummy. Visits from Sam (Searle) and Sonia with a 45 min chat with Larissa and Tracey (yoga). All this followed by meds teeth cleaning then bye bye to Norm

Bugger just typed two pages and lost them oh well will try again tomorrow. Pity they were really interesting

20/05/12

Hi, everyone.

After all of Val's good work setting up my room at Bed 17 on Monday we have had to move. On Thursday night a nurse-call tube which also operates the TV decided my breath was no longer acceptable - too much garlic, perhaps? I understand the nurses put in an urgent maintenance on Friday but an electrician has yet to be sighted (excluding Darrel). As my inability to call for a nurse apart from using my own voice was deemed a safety issue, the nurse in charge decided I should switch with Bed 18 and that it should be a permanent switch. This was a bit traumatic for both my roommate Denise and me, and caused a lot of work foe Kylie and Val. The move is now complete and is now - thanks to Kylie - super organized.

Friday afternoon was my first time in the physio gym. At the time it didn't feel like Tiffany had made me do very much but I sure felt it later! Despite this I am looking forward to getting back in the gym next week.

Most days when I am transferred back to bed I forget to ask the nurses to undo and remove my bra. Nurse Tina has christened a term for trying to get the bra off when once in bed: it is called "the boyfriend maneuver" and I am sure requires no explanation for you, dear readers.

Saturday dawned bright and sunny and I was determined to be ready before the scrabble tournament started at 12 noon. Sadly this ambition was not fulfilled, but the day was very successful with lovely food and great company. I was lucky enough to have Karen and Alistair Richards draw my tiles for me, which helped me to pip Paul Richards at the post to win the tournament. It was great to finally catch up to Jaime who had driven down from Gympie that day baring cheese for us hungry scrabblers, hopefully next time we will have a little more time to chat. Celeste and Helene dropped by for a chat and to present me with yet more cake to eat. I am very spoilt! It is perhaps lucky that the bizarre decision to weigh every patient in SIU in one afternoon was made earlier in the week rather than later....

My cold has completely gone now which is a blessing even though the coughing provided only minor impediment to guessing Letters and Numbers clues. Val erupted into laughter when, in the middle of my chest being pounded to assist in coughing, I yelled out "DECADENT" which confused the nurses tremendously. It was the solution to find a word in 8 jumbled letters!

It has been another gorgeous day today. Darrel cooked a succulent batch of scallops in the BBQ to the envy of all and what with snoozing in the sun the day and weekend has passed way too quickly, I hope all of you have been lucky enough to have as good a weekend as I have.

16/05/12

Hi folks, Val and I have had a very busy start to the week with a move to the main section of the Spinal Unit on Monday.  Val has done great work, all the photos are up, shelves organized, she has even bought coat hangers for the wardrobe!   I am in Bed 17 of Room 5.  The room has ceiling hoists which are much quicker and easier than the crane style hoists they had in the Acute section.  The only drawback is that even though I have more space we can't set up the Flying Wonderwoman that EV kindly gifted to me :-). Unfortunately, i managed to pick up a cold from somewhere so did not give Margie the best of welcomes when she arrived on Tuesday.  It seems to be mostly gone now, thank goodness.  Margie has acted as drill sergeant, ensuring that all breathing hand and arm exercises are completed.  This has been a real achievement given the number of wonderful visitors I have had. It was great to see Helen, Ange, Karen and Elise.  Ange finally delivered another box of her sister's choc brownies and Elise a piece of her birthday cake.  I am in no danger of starvation or chocolate deficiency.  Thanks, Guys :-) Martin Waterworth and I had two excellent games of scrabble today with the score one all and both games totaling over 800.  I am looking forward to a rematch at the scrabble tournament on Saturday. The next update probably won.t be posted until next week as I need to spend as much time as possible with Kylie, Darrel, Margie and Val.  Hope you are all well xxx

BIG NEWS THE TRACHIE IS OUT YAYYY

The doctors may be beginning to figure me out as they really only gave me five minutes warning to worry about the procedure. It was quick but somewhat painful for a wus like me.  I now have a large adhesive dressing over my throat to cover the hole as they don't stitch anything up just let it grow together naturally.  It should take about a week to heal and then hopefully I will be transferred to the main section of the SIU.  This will mean reduced visiting hours 12 till 2 and 4 till 8 on weekdays and 12 till 8 on weekends hopefully it will not impact too much on my social life and scrabble :-)

I managed to clumsily consume about half a banana with some help from the OT.  I did not spear myself in the face with the fork which was a major achievement in my opinion :-) banana mutilation will recommence tomorrow afternoon.

I had a very nice afternoon playing scrabble with Olga and Cheryl Davidson yesterday, Norm's tile selection seems to be improving.

All in all a very good week to date

Thanks again to everyone for your continued support, visits, comments, cards and gifts, I couldn't do it without you.

As dictated by Julie on Monday 7 May

Dear interested parties sorry for the delay in updates you would not believe how easily the day gets away from you.  My current routine is to wake up around 7:15 AM request pain killers in preparation for physiotherapy prior to falling asleep during the inhalation from two nebulisers.  After chest physio to cough up the gunk accumulated overnight there is normally a short nap before breakfast then shower before finally getting into a wheelchair somewhere between 11 and 12 depending on timing and visitors I am supposed another two nebulisers, by then it is lunch time.

I have been lucky enough to have lots of visitors particularly those inclined to play scrabble.  The Richards, Olga and Martin have even organised  an official four game tournament to be held on the veranda on 19th May, please note registrations are full :-).  Kylie has agreed to be my scrabble hands for the tournament.  As of this week the scrabble playing will be decreased as I am scheduled for occupational therapy 1:30 to 2:30 PM daily (hospital time).

I was pleased to find "DARREL" on my rack last week see the picture, I was surprised to see he was on Larissa's rack along with an S as well, she played "LARDERS" for 70 points (Norm apologises he is too electronically illiterate to attache the photo and will add it to a later post)

Tomorrow at my OT session I shall be attempting to eat a banana with a fork using with my left hand,  this could be messy although spaghetti would be worse :-)

The weather in Brisbane has been beautiful and it is great to get out of the hospital buildings onto the veranda and into the sun away from the hospital air conditioning.

After a few experiences of waiting up to an hour to get back into bed I try to be back inside by 4:30 PM as the dinner rush starts then.  (! As i am surprised dinner starts so early).  I have still been lucky enough to avoid the hospital dinners and most of the lunches, the cereal at breakfast is not so bad.

The procedure for getting in and out of bed involves a sling and a hydraulic hoist like a small crane.

My current goal is to get the tracheostomy out hopefully this will be achieved this week, fingers crossed.  this will improve my mobility I am looking forward to going to the shops to get my glasses adjusted.

I will try and update the blog more frequently, scribe/s willing' bye for now love to all from Julie