Thu 31 Aug 2017 A busy week

This week has been pretty straightforward...

Monday
Physio, OT then Rheumatology appointments for the morning. Rheumatology news was a bit disappointing, meaning no reduction in steroids (prednisolone). Last month Elise swapped her Mycophenolate to the enteric coated one, trying to avoid the problematic side-effect of 3am wakings with creepy dreams... unfortunately she couldn't get back to sleep each night. So Elise has been very sleepy.

It is now 5am wakings with less creepy dreams - well, it's better than before.  Seems that the "equivalent" dose isn't equivalent, as her blood results deteriorated, with ds-dna going up a bit and complements dropping. Action plan: increase morning dose. Hopefully things will stabilise as we REALLY want to get her pred. dose down - she is 3x over the safe limit (for her size).

Weekly med's

Started Elise on some extra supplements...never know what might help healing of nerves along. Pill box is getting rather full!

So here's the list of supplements she is now on:
Vit D - essential for Lupus and being on steriods
Vit E - great for healing
Iron/B12 every few days - she is a vegetarian
Calcium citrate - 3 tablets, essential as she is on steriods
Chinese herb formula for urinary support
Co-enzyme Q10 - implicated strongly in helping recovery of spinal cord
B5 - yet to come in mail, also implicated in healing
Probiotics - necessary due to frequent antibiotic use

Tuesday
Well, sometimes we just have to do things and this was one of these days - Urodynamics study. Elise has a neurogenic bladder ie. paralysis has caused loss of brain control. So, Elise had her bladder botoxed about 2 months ago. When you're paralysed they really botox it, high dose. This stopped all her constant bladder pain (due to spasms) and leaking. Typically, Elise's bladder spasms was one of the worst they had seen so they decided it needed checking...hence, a follow-up study of her bladder dynamics. (Not the greatest thing to have done but they are very kind!). At least it's not painful.

X-rays of her bladder in various stages of filling

It took all up about one and half hours...2 Urologists, 2 urology nurses, a radiographer and me. Actually it was fairly boring, lots of waiting in-between the intermittent x-rays and checking pressure etc. We don't want any backflow to the kidneys. Passed with flying colours.

Botoxed bladders usually last 6-12 months before having to have it re-done under a light general. We aren't sure how long Elise's will last as we have had hints it may fail early - not good.

Wednesday
Burn update...burn dressing day again. The plastic surgery clinic opens every Wednesday afternoon.
It is getting better, new skin slowly forming (the grainy lumpy look is good apparently) but it will be around another month.

See link of foot (if you wish to look)
https://photos.app.goo.gl/oDZ2E2NGnfcZCocB2

Thursday
A great day at school, esp. with a maths test result of 88%!

Sun 20 Aug 2017 Foot not great

 Elise is chugging along, attending school part-time and spending the rest of her time at hospital etc.

Foot isn't great...apparently it is worse than initially thought, the centre is quite a deep burn. We are hoping to avoid surgery and are having weekly silver dressings at the hospital. Unfortunately that means another month of low physio, no hydro/swimming, no horse-riding etc. This isn't a big deal but the significantly increased stiffness and spasticity is... it makes it hard for her to transfer and move around as her legs are so stiff or start rhythmically jumping up and down (called clonus). So the anti-spasm med's have been increased but that weakens other muscles as well.
https://goo.gl/photos/cDSHRHNdVttWxwiQ8

See link for last weeks burn progress (note: a bit ugly you may not want to look!)
https://goo.gl/photos/J85AVRw1foaLHesn7

On the medical side, we have been trying to get rid of a stubborn cuticle infection on her big toes. With a suppressed immune system and post-chemo it is proving difficult. Toe nails haven't grown since hosp admission (typical of being so sick and being on chemo) - podiatrist just told us that she will lose her big toe nails ... they will drop off. Apparently the yellow/white band on them is the nail dis-engaging from the toe bed. Sounds disgusting. I have no idea how or when a new nail will grow. Have tried - salt baths, antibiotics. Now trying - diff. topical antibiotic, iodine antiseptic cream and soon vinegar soaks. Any ideas would be welcome. We thought a cuticle infection wasn't a big deal - it usually isn't - but when she was admitted last time overnight, the IV antibiotics cleared up overnight her swollen purple lower leg...now we think was the infection going up her leg. It can turn very nasty.

Looking red and swollen

How do you warm up feet with bad circulation?

Click on the link below to see part of her home exercise routine.
https://goo.gl/photos/MnoSzNKRyPv5XaH79

This weeks exciting thing was Elise perfecting her ability to get into her wheelchair from the floor. Pretty important skill for daily exercises and independence. See link below of her recent attempt.
https://goo.gl/photos/5Eb5MY1weY8mEvX49

Generally speaking, Elise's physical improvements are now modest...it is more about technique and gaining strength to learn more wheelchair skills etc. However, continuing physio, horse-riding etc will make a big difference to her movement over time. 

Thu 10 Aug 2017 Update on the burn

Yesterday Elise had her second visit with the Plastic Surgeon to check on how the burn is progressing on her heel.
The specialist was pleased with the progress and put on a new dressing and another patch impregnated with a silver based medication.
Next week there is another appointment and if the good progress continues the next stage of dressing will be used.


WARNING: the link below shows the wound so don't click on it if you are faint hearted.
https://goo.gl/photos/L6NGXQZv6oZAf9YXA 

Mon 31st Jul 2017 Super good news on blood

dsDNA is the best so far.

Complement C3,4 first time ever, except for an anomaly, in normal range.

Inflammatory marker ESR, extremely low.

The blood tells it all and the info from this last sample delighted us.
Elise's ESR told the specialists in the first instance that she had Lupus two and a half years ago. Unfortunately it never dropped to a satisfactory level, only now, for the first time, it's within range.

The wonder of modern medicine in combination with the miraculous human body has brought the levels under control.

We had a disappointment Saturday evening in that there was an accident with a hot water bottle being too hot, resulting in a second degree burn on her heel. Because there is no feeling in the heel, Elise wasn't able to tell it was being damaged and didn't know for over an hour. This resulted in another trip to Monash Emergency - a special dressing and an appointment with a Plastic Surgeon in two weeks time to check on the healing process.

Sun 23rd Jul 2017 Settling in to home life

It as been a few weeks now from discharge and Elise is very happy to be home.

Below is a list of some of the recent highlights and ups and downs.

2 weeks of school hol's
- nearly every day at hosp for physio/OT/clinic appointments/pathology etc.
- overnight stay down the coast ended up at Rosebud emergency with infection
- another overnight at Monash Children's while they tried to work out what happened...
fascinating listening and watching the experts throw around ideas, discuss medical possibilities in a foreign language, having a group of about 6+ specialists discussing ideas is a different world. Result: IV antibiotics, observations, more samples and wait and see approach.

- Friday 7th July was a big day...Jesse's 16th birthday and for Elise, the arrival of her new wheelchair (unfortunately it needed some minor mod's so it was taken away again till Monday - an emotional blow).

- Monday 10th July.  On Monday it was returned, more minor mod's...balance point changed etc. Final weight 14kg, a bit heavier than we thought but it wheels beautifully and will make her life so much easier. She is working on "wheelies"...very practical actually so she can learn to go over small curbs and bumps.

Below is a video of Elise practicing a mono.
https://photos.app.goo.gl/0dzb9ka3vQeBj7rh1

In the afternoon, Elise went out with her new chair to Chadstone Shopping Centre with a school friend, Jessica. First time to experiment with disability toilets and movie theatre seat logistics. All went swimmingly well....a relief for all. Elise now has her own "Companion card", which allows free entry to many things for her companion. A nice bonus, especially as now we will have to do more inside things that cost due to accessibility.

- last Wheelchair skills session with Richard Colman, http://colman.com.au/

Link of the skills session video:
https://photos.app.goo.gl/pXRci4tPSmZxcg0r2






- Thursday 20th July. First hydro session.
Elise has been pushing for hydro for months, finally the hospital agreed that she could go...they wanted her to primarily focus on physio for leg movement, not swimming. But after arguing that her painful shoulders needed more attention, she won out and they organised it. As it turned out, it was a blessing.

Many paraplegics can't swim, their legs and hips just sink. We had no idea what would happen when Elise got into the water, so it was very exciting when everything went fantastically.

https://photos.app.goo.gl/20BIB3g0eN4q652F2
https://photos.app.goo.gl/xBKlKP1TlbpEwdSp2 

In fact it went so well that I have subsequently spoken to our local swimming school and they are keen to take her on. Obviously, swimming would be brilliant for her upper body. We need to keep her exercising regularly to minimise repetitive injury from pushing her wheelchair.

School start
1 1/2 days so far, all went well.  We are aiming for 3 days/week for this term. This allows for all the hospital visits, daily home exercise, horse-riding and everything taking so long.

In summary, we feel very blessed. There is much to be thankful for.

Mon 19 Jun 2017 Party time

A fun pose from some of the group

The chocolate game was a huge hit, as was the homemade food contributions from the rehab team. Elise made a choc-orange cake and we put together some sushi before the party. It was my first time making sushi  - actually I was surprised how easy it was to make, it will be on the Richards' menu here and there from now on. The Rheumatology team arrived a bit late so aren't in the picture and the nurse's decided to have party on discharge day, Wednesday. Note Stuart and boss Barry talking about the merits and disadvantages of a female dominated workplace at the back.

All spelled out - Wish you all the best Elise

Some of the team - Sabine (pink flower in hair) paediatritian, Fiona (beside her) dietitian, Kate (beside Fiona) therapy artist, allied health assistant (blue and pink top), Katrina (pink top) teacher, Amy (white plain top) music therapist, Tanya (one sided haircut) senior physio, Barry boss of rehab, Liz (white top and light hair) social worker, Amanda (moroon top) OT, Mahek (squatting down, black hair) physio, Mel (glasses squatting) and Jodi (beside her) allied health assistants, Katherine (squatting in grey and black top) physio, social worker student (in front of Barry).

Stuart, still recovering from his opp, had his first part-day back at work (with the party sandwiched in-between). He can now stand upright which I am very thankful for, on the mend.

Click below for video links of games
https://goo.gl/photos/bBsRE2ZQcoPUBMvx9

https://goo.gl/photos/SGNoAxEEA9saGLj6A

A silly game

More sensible now

Thu 15 Jun 2017 Six months today

Today marks time of 6 months in hospital. I can't believe I have spent nearly 5 months worth of days in a stark old beige ward and a month or so in the bright new white "hotel".

Plans are continuing for the discharge party on Monday, actual discharge is on Wednesday. Head departments are being told to cook, that will be interesting! Elise has requested the chocolate game....for those who don't know...pick a dice number, sit in a circle and roll...the person who gets the number starts dressing up (hospital gloves, gown, hat etc then commences eating a chocolate block with a knife and fork) all before someone else lands the correct number. Elise can't wait to watch the senior doctors getting into it!

Activities over the last few days...

Saturday
Wheelchair skills program at Royal Talbot Rehab Centre with Richard Colman. I looked him up...an impressive chap, elite athlete and advocate... OAM and multi-medal winner. Best of all he was a great guy, can-do attitude and all smiles.

Wheeling around the cones with one arm only

Unfortunately Elise's new machine hasn't arrived yet, so Richard kindly swapped...Elise loved his super sporty and tiny wheelchair. Something we will look at getting her for sport in the future. Richard was tough... "mono's"...trying to get into her wheelchair from the ground...learning to fall and recover etc.

It was hard and Elise really tried, and failed. Many people never master these skills but we'll keep trying.

Richard's legs are very short, Elise had a bit of trouble fitting her's on!

See the link below for Elise practicing at the wheelchair skills session.
https://goo.gl/photos/WKakRZYGLPmsMgRY9

Meanwhile Stuart languished at home after having an groin hernia opp on Monday - probably too much lifting of Elise and wheelchairs. He is still hobbling around and occasionally moaning. I joke that I now have two invalids to look after! Well, a partial joke ;-)

Sunday afternoon
A bit odd to be shopping on Sunday as I usually avoid it. We went to Horseland and purchased the necessary gear. Will post a pic when she is all dressed up.

Tuesday
Cooking with Rita the OT - Peanut Butter and Chilli noodles. Rita forgot several ingredients but it still turned out edible. We had it for lunch. Looked a bit too much like brains for me.

Peanut butter and chilli noodles

Wednesday
Demo of a simple standing frame, necessary to reduce the high risk of osteoporosis of the legs. Elise will need to stand for a minimum of 30 min per day, ideally 1-2 hrs. Maybe incorporate into homework time? Maybe while doing upper body stretches?  Unfortunately using one's arms to get around means shoulder reconstructions in the future unless Elise does a daily exercise routine. Another thing to fit in. Physio's Tanya and Katherine are going to design a 7-day exercise program. I saw the suggested timetable on Tuesday...GULP.

Physio's are hoping Elise will improve enough over the next 6 months to be able to discard the frame and stand against a bench instead. Hopefully.

A simple standing frame

Elise trying out a standing frame after rejecting the previous one (Rabbit stander).
https://goo.gl/photos/vNRtreiU5htU7DAg8

Thursday
Second school visit in the morning - period 1 and 2. It was fundraising day for Yr 10 Mission Trip so the kids had to dress up with something starting with P or J - Passion for Jesus. Elise, on Stuart's suggestion went as a Patient. The nurses got a kick out of picking surgery gowns, booties, hats and bandages out for her. Despite the clothes, Elise was rather stressed to say the least. The morning was a bit tense with her inner fears bubbling over. She was fine after a few minutes :-) I spent today being a taxi - to school, grocery shopping, home, school, hospital, school then home again. I fear this is going to be a familiar pattern for the next few months - we have to return to the hospital 3 times per week for physio and clinic.