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