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William

In June 2008, a sequence of events took place that would change our lives

forever. Our beautiful 4 year old boy suffered a severe adverse reaction to

a drug, which set off a string of events, including a 5 week stint in theintensive care unit at Sydney Children’s Hospital.

Throughout the ordeal, we kept a blog as a means of keeping our family,

friends and interested others up-to-date, without having to re-tell our ever-

changing story continuously. Little did we know at the time that the blog

would not only provide us with excellent “therapy”, but it has provided a

detailed account of the journey, which we are now able to use as a means

to convey William’s story whenever required.

By reading this story we hope that others will recognise the wonderfulstrength of the human spirit and that this near tragedy and William’s ability

to overcome brings a ray of hope to all the people who read it.

William’s OrdealPosted on 3/7/2008 at 9:00 PM

Here's a quick overview of the early stages and how we got to the Sydney

Children's Hospital. I'll post an update every day or two. I'll also try to fill in

the gaps up to today.

MONDAY 16 June 2008

On Monday night, William woke with an itchy back. He had about three

spots that looked like insect bites. Mark checked his bed, popped on the

Stingose, and then that was it for the night.

TUESDAY 17 June 2008

By Tuesday, we were convinced that William had the chicken pox. There

was a late night dash to the chemist, thanks to Grandma for sitting with

William while allowing me to borrow her car, to purchase calamine lotion

and Phenergen. We eventually got a little bit of sleep, though no relief ofWill’s high temperature.

WEDNESDAY 18 June 2008

Tried to arrange an appointment with the GP, but couldn’t get in (typical

isn't it?)

We went out to Queanbeyan for our 10:45 licence tests, which was a

complete disaster as Mark was not long enough on his L’s to do the test,

and I failed!!! (Luckily I'm more used to failure these days...) Mark headed

straight home.



Grandma was looking after Will while we were gone. By the time Mark

returned from Queanbeyan, Will’s lips had become extremely swollen and

purple. Mark immediately decided to take William to the hospital. This

involved chasing Pop down the street for a lift to the hospital.

(Of course, throughout this adventure, our car was in being fixed, so wewere relying on Grandma & Pop for transport.)

On duty was a Dr Amir, a paediatrician as luck would have it. They

gave Will Panadol suppositories to address the high temperature and

quickly indicated that he did not think that William had the chicken pox.

At this stage William was still awake and talking to us. He was desperate for

a drink and starving hungry, but his lips and mouth were becoming sorer all

the time, so he couldn’t have anything, much as he tried.

They set Will up with a cannula to give him some fluids as he had been

unable to drink since sometime on Tuesday.

Dr Amir gave a preliminary diagnosis of Steven’s Johnson syndrome. He

explained that this was a reaction to either a viral infection, such as Herpes

(ala cold sore virus) or perhaps a lung bug (can’t remember what it was

called) or could possibly be a reaction to a drug. Will had a chest x-ray to

rule out the lung bug and they took a swab to see if there was any viral

infection.

Dr Amir contacted Canberra Hospital and arranged to transfer Will over

there to be admitted. We once again wangled the loan of Mum & Dad’s

car to transport him there.

As the afternoon and evening progressed, Will quickly became worse and

worse. His temperature remained high, his mouth became more painful,

and the rash continued to spread, particularly over his torso and face. By

the evening, Will had started to lose sheets of skin, through blisters forming

and shearing off. TCH applied a dressing to his torso to protect his skin as

much as possible. They also started him on IV Panadol and a morphine

infusion, as the bolus’ were not sufficient.

Dr Lafferty visited William, with his team of registrars, to discuss Will’s

management. He indicated that he also thought that Will had Steven's

Johnson syndrome and that we may need to transfer to Sydney.

THURSDAY 19 June 2008

3:30am we phoned Grandma and asked her to come to the hospital, as by

this stage we were not coping. We were both emotional wrecks as we

watched our little boy's downward spiral. He was delirious with the



temperature and hallucinating. He was also in pain and extremely

agitated.

Thursday morning, when Dr Lafferty (Paediatrician) visited, the decision to

move Will to Sydney was made. Dr L agreed with the diagnosis given at

Calvary on Wednesday and explained that the best course of treatmentwould be similar to that for a burns patient and that the best place for this

care is Sydney.

They moved William to the High Dependency Unit and commenced the

arrangements for the transfer.

(Throughout all of this, we had a very dodgy registrar poking her nose in. I

plan to write to TCH to voice my concerns…)

Dr Buchannan (anaesthetist) put in a PIC line. This was a very difficultprocess as William was awake and needed to be held still. Not to mention

that this procedure is difficult at the best of times…

A catheter was also inserted, again to an awake William.

The NETS team arrived at around 2pm. They had driven to Canberra in an

ambulance, as when they left Sydney, the weather was not favourable.

However, once they reached Canberra, the weather had improved and

the Care Flight helicopter followed.

The team consisted of Rosemary, the Kiwi doctor, John, the American

nurse, and Trish, the Irish nurse… I’m still trying to come up with a suitable

punch line – there’s a joke in there for sure!

Trish ended up staying behind so that I could travel with William. She

returned to Sydney in the Ambulance with Darren, the paramedic.

It took a considerable amount of time to prepare for the flight. There was a

comprehensive hand over from TCH staff to the NETS team. Then there was

an incredible amount of equipment to sort out. Essentially, William had tobe re-wired onto the portable equipment the NETS team were using. Then

the same at the other end to transfer into the care of Sydney Children's

Hospital. William was strapped into a very skinny yellow bed for the trip.

Just the top part of the bed goes onto the helicopter, the trolley remaining

behind.

Much care had to be taken to ensure that William’s respiration was

maintained, especially at altitude. For this reason, the team were very

careful to minimise sedation, as this can adversely affect breathing. As it

turned out, William freaked out on the flight and had to be sedatedanyway… Becoming delirious and probably hallucinating, William was very



put out by the straps and the ear protection he had to wear. In his febrile

condition he decided to thrash around, pulling at tubes and cords

everywhere. Once sedated, he had a much better trip.

I must say, I was looking forward to having a ride in a helicopter, but I can

only tell you that it was very noisy and drafty. It was slower than I wouldhave imagined, and I really just wanted to get out of my seat and help my

son. I didn’t even look out of the window very much…

We made it to Sydney. The pilots gave William a little pelican toy to

remember his flight – a special toy that is only given to Care Flight patients.

When we arrived, the SCH team were waiting. After transferring William to

an ICU bed, the NETS team gave a thorough hand-over. Then, the team of

specialists – intensivist, ophthalmologist, dermatologist, nursing….. gathered

around William’s bed and discussed what would happen next. Beforeanyone did anything, there was agreement as to what order things should

happen. First thing was William’s eyes. As his eyes had been adhered

together since Wednesday night, Will was not only in pain and scared, he

was effectively blind too.

Next was skin. Enter Ray. Dr Ray, dermatology registrar and all round nice

guy. Ray started Will on the Intra-Venous Immuno-Globin (IVIG), for three

days. This seemed to arrest the disease process over a period of a few

days. It works by stopping the auto-immune process by using a huge range

of antibodies to occupy the receptor cells and effectively short-circuitingthe body's crazy reaction.

Once settled in, Mark arrived, driven by his brother Tony. Tony sat with Will

while we got some rest. During the night, Will began to have trouble

breathing and they had to do an emergency intubation. They had

difficulty getting his oxygen saturation back up and for a while we thought

it was all over. (I've got to say, these few days are easily the worst I've ever

experienced.) Thankfully, they managed to get it all sorted and Will was

OK.

FRIDAY 20 June 2008

Friday he had a tracheostomy, mainly because the oral tube was causing

too much damage to his skin around his mouth. Turned out to be a wise

decision, as 4 days later, his airway down as far as his vocal folds had

swollen so much that the ENT's couldn't get a scope down, meaning that

there was no longer a viable airway.

Will had new dressings today as well. Took 3 hours and lots of drugs.



SATURDAY 21 June 2008

This is the first day that there's not much to say as Will is stable. Thank

goodness for that!

SUNDAY 22 June 2008

Much the same - stable. Dr Lafferty phoned the ICU to see how Will wasdoing - that was nice.

MONDAY 22 June 2008

Today we had visits from the urologist and the pain team. No change to

management.

TUESDAY 23 June 2008

ENT visit. Plan to change trache tomorrow. Has to be done in theatre first

time.

Today's dressing change took 3 hours.

Getting to know the nurses. We know which ones we like anyway!!!

WEDNESDAY 24 June 2008

As I already mentioned, the ENT's changed the trache and found a huge

amount of swelling in Will's throat. Will was responsive today, and when

sedation was lighter, he was responding to yes/no questions with a slight

nod of the head. We wore him out a bit though, because we were so

delighted to see that our little boy was still there!!

Will had a pretty restless day due to tummy pains.

More drugs, different type of drugs, different combinations...

THURSDAY 25 June

Will had a great day. Changed him from morphine to fentanyl, as one of

the side-effects of morphine is itchy skin!!! He had a settled day and

seemed to get plenty of rest.

William's temperature has been consistently high for the past 8 days.

Today, with the help of a cooling blanket, Sally was able to get his temp

down to 36.5. His pulse also settled down to about 110 - 115 bpm.

FRIDAY 26 June 2008

Today William had lots of visitors - Wayne, Therese, Pop, Samantha and

Louise. We had a very emotional day, especially when it came time to say

goodbye...

William's lower left lobe of his lung is beginning to show some congestion.We're keeping an eye on it...



Below is a photo of William while he was having dressings changed.

WARNING - might not want to look at it....

Hi Vanessa

Posted by Jancye on 3/7/2008 at 9:31 PM - Link

Hi Vanessa

It is so good of you to post this as we are all so worried about you all.

Not a day goes by that I do not run into someone who says "Have you

heard from Vanessa?" and "How’s Will doing?"

I have been reading quite a bit about the syndrome and it is so rare.I am not going to say that I know how you feel but I have more of an idea

than some.

I am not sure how much I shared with you about Colleen’s ordeal 5 years

ago when our world was turned upside down one night 5 nights before the

Canberra bush fires. Colleen at aged 17 was diagnosed with Aplastic

Anaemia (bone marrow failure) again a 1 in 1 million chance.

We spent the next 8 weeks sitting by Colleen’s bed with each day being

topsy turvy whilst the team scanned all the extended family for a bonemarrow match. Alas no match to be found so they also used the globin

that Will has had which can cause tummy pain etc and generally makes

you feel very unwell. She had a central line inserted which needed 2 goes

with her wide awake screaming.

All I can say is just take things one day at a time as by now you will know

each day is going to be different.

My life saver was walking when Colleen was having treatment. I would

leave the hospital with my headphones on and just walk and walk and



sometime cry and walk and scream and walk.....You need to rally look after

yourself so that when Will really needs you soon you will be ok.

Thank you so much for taking the time to write this blog and I will jump on

every day. Feel free to ask me anything about the time with Colleen or if

you just want to share.

Best wishes to Mark. Don't forget to hug and kiss each other often. Big hug

to little Will.

Jancye

Thankyou

Posted by Jan on 4/7/2008 at 10:28 AM - Link

Hi Vanessa and Mark

Thankyou for including me in the blog. It’s good to hear what you are

going through, without you having to retell the story over and over. All of

TACT is thinking of you and William. We look forward to hearing some good

news of his progress.

Glad to hear you are giving the medical staff a run for their money. It’s so

hard being on the other end of treatment.

Also thanks for introducing me to the world of blogs!! You know how

challenged I am!!

Looking forward to you all returning to Canberra when might be able to be

of some practical help! Hope you still have a few happy pills left to get you

through.

Cheers,

Jan

Our thoughts are with youPosted by Anonymous on 4/7/2008 at 1:31 PM - Link

Hi Vanessa

It sounds such a harrowing experience! Our thoughts are with you.

I hope everything goes well and you can all return safely to us in Canberra.

Brian

WillPosted by Anne on 5/7/2008 at 3:33 PM - Link



Hi Vanessa and family

Thinking of you all every day.

Take care, lots of love and best wishes.

Anne

Life narrative

Posted by Anonymous on 6/7/2008 at 10:53 PM - Link

Hi, thanks for sharing information about Will. We can only send our best

wishes until you all come home, when we can give more practical help.

Count on it.

Sally

The Next Installment...

Posted on 5/7/2008 at 9:37 PM - Post Comment

Picking up from where I left off a couple of days ago, the following brings

everyone up to date. I've inserted more photos so that you can see the

improvement - please don't look if you find it distressing.

This is William with his prayer hankie, sent to him by Eric, Karen and friends.

He's been holding it a lot of the time. We've got all the nurses keeping

track of it and making sure it doesn't get lost.

SATURDAY 28 June 2008

William’s tolerance to the pain

medications and the sedation is

increasing, so they are constantly

upping the dosages. In addition,

they give additional bolus’ before

giving any intervention.

They are watching his lungs, due to

a shaded area in the lower left

lobe. This is typical for someone on

ventilation who is not moving

around much. The situation is also complicated by the fact that they can’t

commence chest physio due to the condition of William’s skin. Having

taken William off antibiotics – yesterday I think - they have started him back

on a different combination to guard against a lung infection.

William had a visit from Tasha today, which was lovely. Also, my Uncle Tom

and Aunty Margaret came for a visit. Isn’t it terrible that you only tend to

see people in dire circumstances?



Anyway, William was settled today. So much so, that we actually felt OK

about going to see a movie (the latest Indiana Jones movie).

SUNDAY 29 June 2008

William was settled again today. Weekends seem to be quite good in that

there aren’t too many people “doing” things…

Every day we have a visit from specialists in dermatology and

ophthalmology. They are continually monitoring William’s skin and eyes.

They have inserted some special lenses to prevent adhesions forming or

scratches to the cornea, as this may impact on vision. Otherwise, they

scrape his eyes each day to ensure there is no build up of membranous

tissue or adhesions. He also has an eye care regime that has to be

followed to ensure that there is no infection and that his eyes are well

lubricated.

MONDAY 30 June 2008

As today is the last day of the financial year, I managed to spare a thought

for work. (It was only fleeting…)

Dressings were changed today – many hands on deck and a proper dose

of anaesthetic, so only 2 ½ hours. Not bad. Today, they soaked areas of

William’s skin and then gently washed areas of dead skin away. Then they

placed special silicon gauze over William’s face as an experiment, to give

added protection to the skin. The result is amazing. See the photo…



Some concern regarding Will’s eyes and specifically his corneas. Some

scratches apparent and may be drying out due to the special lenses.

Today, William had a visit from his Grandma...

This is the "before" shot:

This is a picture of Dr Ray andKimberley, working on Will's

dressings.



This is Will's skin underneath the dressings - lots of beautiful new skin!

BACK

FRONT

And here is the "after shot", with the silicon dressing on his face:



TUESDAY 1 July 2008

Increase in ventilator pressure to try to inflate the area of William’s lung that

is of concern.

There is quite a lot of blood around Will’s face, particularly his lips and eyes.

And don’t get me started on secretions!!!! Yuck!

Lenses were taken out today, as they were causing too much concern. So

it’s back to sweeping with the glass rod each day.

The dressing they put on Will’s face has not been as successful as they had

hoped. It was tending to come off whenever he moved / was moved, also

seemed to collect the aforementioned secretions (double yuck!).

The upshot is that now we can see the beautiful new skin that was

uncovered yesterday. Everyone passing through the ICU is stopping tocomment on how much better Will’s skin is looking. Here’s another photo:

William has been receiving medicines to assist with bowel movements ever

since we arrived. They’re pulling out the big guns now… Enough said

about that!

William’s femoral line had to be moved this morning, as they only have a

limited life span. They also moved the Arterial line to his ankle. All seemed

fine.

All day today, William was very agitated and unsettled. There was a lot of

difficulty with sedation and nothing seemed to work. Turns out that

William’s femoral line was blocked and unfortunately, Will had not been

receiving his pain relief or sedation for who knows how long. Once this was

discovered, they swapped the lines over and William settled.

William finally seemed to settle this evening – probably exhausted.

William's skin is improving everyday...



This is one of the wonderful nurses who has been looking after Will (and us) -

Tracy. Turns out she's a little camera shy...

WEDNESDAY 2 July 2008

As it turns out William didn’t settle down after all and remained unsettled

until about 2am.

This morning his skin looks amazing! We’ve definitely turned a corner in this

regard.

Today they had to re-wire his femoral line after the second lumen gave up

the ghost, leaving only one line, which was not enough to accommodate

all of the drugs…

They popped a cannula in William’s hand as an interim measure, while

sorting out the central line.

Sedation seems to be much better today. Will didn’t even flinch when they

did his eye care. He even managed a poo!!

Went out to dinner with Tasha – lovely!



THURSDAY 3 July 2008

BIG enema = BIG poo!!!!! Hooray!

Looks relaxed, doesn't he?

FRIDAY 4 July 2008

The ENT’s came and changed Will’s trache tube this morning. There is

some overflow coming out of his nose and mouth when the cuff is down.

This is really good, as it means that his throat is no longer completely

constricted and that some air is able to pass through his vocal folds. This

constitutes an improvement! Only problem is that now he is blowing

bubbles (did I mention the secretions?)

Today was a dressing day. Only 2 ½ hours today, which is good. Will’s skinis looking great. I have been leaving my camera with the staff during

dressing changes so that they can take a few photos of the skin under the

dressings. We try to stay out of the way during this time.

Ray (dermatologist) is very happy with Will’s skin. In fact, they have

decided to leave the dressing off his right upper arm as the skin has healed

well. It will still have to have the special paraffin cream to protect it and to

keep it moist, but this is definitely an improvement.

Lips and eyes are still the problem. There are definitely some scratches tothe cornea. Hopefully they will heal.

Mark had the brilliant idea of trying some local anaesthetic on William’s lips

to try and stop the lip smacking that is perpetuating the bleeding and

interfering with the skin repairing itself. The doctor agreed to trial this

overnight and to discuss the ongoing use on rounds tomorrow.



Check out the improvement on

Will's back, compared to the last

photo...

And front as well. The brown marks are

from the silver dressing they use.

Here you can see the silver dressingsgoing on. I think he looks like a

Teenage Mutant Ninja Turtle!

William's upper right arm has healed

up nicely. They have decided not to

re-dress this area and just to keep the

paraffin up to it.



And here is the loveliest photo of

all. You can really see the

improvement.

SATURDAY 5 July 2008

Will started on some gentle chest physio today. It has to be done gently so

as not to damage his skin.

They started putting lignocaine on William’s lips, a local anaesthetic. Based

on the same principle as the trial last night, but using a different drug.

Will was quite unsettled today and was given many doses of Propofol to

sedate him. Again his tolerance seems to be increasing. When he is not

completely sedated he is tending to try and rub his face. This is bad on a

number of levels – skin, NG tube, trache tube, eyes, lips… So up go the

doses again.

OK, so now I have caught up. I should be able to do an entry each day.Thanks again to everyone, for everything!

Untitled Comment

Posted by Jancye on 6/7/2008 at 7:53 AM - Link

Hi Vanessa

Thanks for bringing us all up to speed. Thankfully I am not the squeamish

type and found the photos interesting watching how Williams skin is

improving each day.

Good to see you did something "normal" and went to the movies- even if it

was such a dreadful movie probably just what you needed.

Let’s hope William’s sedation is ok now and that the lip treatment is

working.

Take Care

Jancye



Untitled Comment

Posted by Liz and Mark on 6/7/2008 at 11:50 AM - Link

Mark and Vanessa - thanks for sharing this with us. We are thinking of you all

everyday and bug Vera and Peter for updates and information. I have so

many people ask me everyday how Will is going. He is looking so much

better now. We will keep praying for his recovery.

Love Liz and Mark

William!

Posted by Evie on 7/7/2008 at 1:25 PM - Link

Darling William, we're all thinking of you all our best hopes well wishes. With

many smiles, hugs and kisses!!

Evie & family xoxoxoxoxoxoxoxoxo

Untitled Comment


Dear Mark and Vanessa

Just wanted to let you know we have been thinking about you and praying

for little William. He is looking so much better and we hope he continues to

improve with every day and you are able to get him home and back to his

big sister Samantha as soon as possible. Sending you our love and best

wishes.Nadia, Jonathan and the gals xxx

We Love you Will


We love you Will, keep on getting better so we can give you a big hug! We

can't wait to play soccer with you. Love Ben and Lara

Progress Report


SUNDAY 6 July 2008

Today has been uneventful really. We have been concerned about

William being uncomfortable, as he has been wriggling around under

enough sedation to knock out a rhinoceros. We are wondering if he has

pains in his tummy... They will do another x-ray to see if there is anything

obvious going on.



Today, William had a visit from Uncle Tony.

MONDAY 7 July 2008Happy Birthday Katie!!!

Today we had a visit from Eve. I hope everyone realises that we're not

going to make a habit of having a sick child, just so we get to see you

all!!!!!!!!!!!!!!!!!!!!!!!!!

William has had a GREAT day! First of all, they have washed his hair!!!! It

took 4 washes, but it was so worth it! This may seem like a small and

insignificant occurance, but believe me, William's hair was disgusting!!! The

combination of skin, blood, secretions and paraffin - not good! They also

gave his skin a really good clean and removed any dead skin they were

able to remove. He looks incredible. He has been so relaxed today. We

are speculating that some of the discomfort may have been due to

itching, and that the wash may have made William feel much more

comfortable.

Here is the "style team" at work, complete with their secret weapon -

strawberry smelling shampoo/conditioner...



How's this for a transformation???????

William is due for a dressing change tomorrow. The doctors are starting totalk about backing off on the sedation, with a view to slowly waking William

up. This is a very exciting prospect, though it is going to be difficult. He will

not be able to speak as he will still be on the trache. It takes several days

before they can take him off the ventilation, as his lungs have to re-

establish themselves.

We were discussing the need for physio when he is better. The thoughts are

that he will probably need some time to get back on his feet - several

weeks.

Eyes are still a worry. This may well be the last area to heal. He will

definitely require follow up when we are back home. He may also require

eye drops on an ongoing basis to keep his eyes lubricated. We can handle

that.

Now, lips. Still a problem area. Had a consult from a maxillo-facial surgeon

today (the dentist is away). He made a mouthguard for William. This seems

to have worked quite nicely, as William is not able to roll his lips together,

thus preventing them from being damaged, bleeding, and not getting

better. Only problem is that William managed to work the guard out of his

mouth! Of course, it went straight back in!

Here's a picture of a very relaxed

William, looking amazing and

holding his "Floppy Dog". We're

feeling much more positive today

as we are beginning to see some

real improvements.



By the way, yesterday's x-ray did not show any problems with William's gut.

As he had such a good day today, the itching theory has overtaken the

tummy theory.

Untitled Comment


Wow Vanessa

Williams face looks amazing today! What a difference with the skin growing

back so lovely and pink.

As I was a dental nurse in the arch ages I am interested in the mouth

guard- not a bad idea as Williams lips do look a mess. Hope the mouth

guard helps.

Lovely photo of William cuddling his teddy too.

Talk soon.

Jancye

Thinking of you guys

Posted by George Cora on 8/7/2008 at 12:27 PM - Link

William is certainly looking a lot better. Thinking of you guys.

George Cora

The Road to Recovery

Posted on 13/7/2008 at 9:30 PM

TUESDAY 8 July 2008

William had a great day. Dressings took a couple of hours. There were only

a few small patches that still required the silver dressings. His right arm has

healed nicely and he no longer has any dressing on it. This is veryencouraging as this arm was one of the worst affected areas. There are still

a few areas of concern and

these will just take time.

This is Will's chest. The brown is

from the dressings. Check out

his skin though - it's completely

intact!



This is William's back. Aside from the fact that he looks a bit like a piece of

burnt toast, you'll see that his skin is intact!

And here is his upper right arm - almost perfect!

William has been having a few abdominal issues and today was no

different. His tummy becomes distended and William becomes extremely

agitated. Today he required two enemas in addition to his regular cocktail

of ‘softeners’ to relieve the discomfort.

Tomorrow they will review Will’s feeds and fluids to make sure this is not

contributing to the tummy complaints.

The doctors have indicated that they will soon be starting the process of

weaning Will off the drugs and the ventilator – this is very encouraging

news!

There have been some problems with the tracheostomy. The stoma has

become slightly enlarged due to Will moving around and there is some



granulation around the site. Unfortunately there is nothing much they can

do about it at the moment, so we will just have to wait and see…


Today William is sitting more upright, which is better for his lungs. The

ventilation has been changed so that Will is initiating breaths for himself,with pressure support from the machine. They have also started the very

slow process of weaning William off the long list of drugs he is on.

Physiotherapy will continue, but increase in frequency as well as intensity,

as Will’s lungs are still causing concern, but his skin has improved sufficiently

to allow more vigorous intervention.

William had a really good day today, perhaps because he was doing some

breathing for himself, or possibly due to another change in drugs - a new

oral sedative to facilitate the transition off the IV drugs.

Over the course of the day, William’s dressings have been getting bunched

up. By this afternoon, they had decided to take them off. Dr Ray came

down to reassess Will’s skin, and although not completely comfortable with

the idea, agreed to trial Will without the dressings, on the proviso that the

skin is kept well-lubricated.

In addition, Paul (you're in the army now), Will’s nurse today managed to

locate a bed that is more adjustable, to help William sit more upright

without fear of him falling out of bed. This seems to be working well so far.

So, all things being equal, we are

hoping to see some steady

improvement over the next few

days.

Here is William (aka Buddha)

relaxing in his fancy bed, with no

dressings and covered from head

to toe in paraffin.


Today we had a move, two bed spaces down. They do this from time to

time to allow for more strategic staffing around the unit.

Paul is continuing to work on lowering ventilation levels with some good

progress. The drugs are also coming down.

They have decided to place a contact lens on Will's left eye, as the cornea

is continuing to get scratched, apparently due to some ulceration under

the eyelids. The Steven's Johnson syndrome affected William's eye tissues in



a similar way to the skin, so the scarring present under the eyelid is due to

the sloughing of the membranous tissues. The idea with the contact lens is

to protect the part of the cornea that, if damaged, will affect vision.

FRIDAY 11 July 2008

The ICU Consultant changes each week on Friday morning. This can leadto a change in the clinical management. This morning, the Midazolam

(sedative with amnesic properties) was halved and all sedation is to be

reduced every 12 hours. This is great!

They are continuing to wean Will off the ventilator, adjusting the settings in

response to his progress. At times we go backwards a little bit, depending

on the circumstances, but overall it's going well.

A urologist came by to change Will's catheter today - all went well. The

condition of Will's skin in this area will need to be reviewed later (enoughsaid about that!)

Will has had a very high temperature today (38-39). We are anticipating a

line change, however it looks unlikely that it will happen today, despite

Paul's best endeavours to impress upon the doctors that this is necessary.

We are expecting to see the pain team again on Monday to review Will's

pain management and drug regime. We also had a visit from the play

therapist, anticipating William waking up a little more. She'll come back

when Will is more alert, though he was a little responsive today. We read"Where is the Green Sheep?" which is one of William's favourite books.

Other highlights for today - in brief: Abdomen - no observable problems.

Skin - good. Healing well. Paul is going crazy with the paraffin - everything

is greasy!!!! Skin looks great! Eyes - good. Opening more easily. Lungs - x-

ray much better. Debate over whether Physio is still required. Will is

managing to cough his secretions all the way up, all by himself - this is

good. Tracheostomy - changed today. Mouth - still a mess, but slowly

improving.

Tonight, Samantha is arriving

with Amanda and Maureen. It's

her Birthday tomorrow. We will

be staying at Ronald

Macdonald House for two

nights...

Here is William - looking better

each day.




Happy 7th Birthday Manta!!!!!!

Samantha made a card for William's nurse, Kathryn - made her whole day.

Today they have continued to lighten Will's medications. They inserted anew line today to replace the femoral line. Will's temperature has already

started to come down since the old line came out. Mind you, inserting the

line was quite an ordeal, with sedation a problem, finding a vessel a

problem... you know, the usual.

Amanda and/or Maureen sat with William for most of today, freeing us up

to spend some quality time with Manta. We had a little afternoon party at

RMH with Ben, Lara and Mitchell (cousins) and a few grownups - Jennine,

Brett, Amanda and Eve. We also had a few random children from RMH

joining in.

After the little party at RMH, we

came up and had cake with

William in the ICU. Farrah (Will's

lovely nurse tonight) thought that

Will's heart rate and breathing

responded while we were singing

Happy Birthday - I'm sure they did.

Needless to say, as this was the

second cake of the night, we leftmost of it there for the nurses

(nurses LOVE chocolate, in all its

forms).

Eve and Manta hanging out with Will...



Close up of Will today - making

great progress.

Overall Manta had a lovely day,

although she became a little teary

tonight as the realisation of havingto go back home, combined

with an exhausting couple of

days and the aftermath of all the

sugar really hit. Problem is we feel

a bit the same...emotionally

exhausted.

SUNDAY 13 July 2008

William looks incredible!

Seven poos and counting...

Will has been having a few chucks as well, probably caused by the blood

and mucous going into his tummy. The doctors have decided to stop his

feeds for a while, just to make sure the chucking is not being caused by this.

Today's big news - temperature is down to 36.6!!!!!!!!!!! PERFECT! William has

had a really restful day, in between moments of intense activity - just to

keep the nurses on their toes I think. His heart rate has been down in the

low nineties for some of the day, which is lovely.

We had to say good bye to Samantha again today - heart wrenching. We

just want Will to get better so we can all go home. Samantha was very

upset, which didn't help us at all. But as we keep telling Manta, we're all in

this together - we're a team. William has the hardest job of all and we just

have to support him - and that's what we're going to do.

So, thanks again to everyone for the wonderful support you've given. We

are fine and there is really nothing we need at the moment, except for our

little boy to getbetter...

Happy Birthday to Samantha

Posted by BrusselsKat on 14/7/2008 at 2:05 AM - Link

Hi Vanessa - I hope Samantha managed to get our present?? I am glad

she managed to get a little celebration in there. You are doing well to

keep your blog up to date, keep up the good work (it's the most I've heard

from your since we left Canberra!). Geno's mum Bej arrived here in Brussels

this morning, she's been awake for nearly 48 hours straight, she leftCanberra Sat morning and arrived in Paris Sunday morning and it's now



Sunday evening and she is still going strong playing school teachers with

Nicola at the moment. Kisses and hugs to you all, we're so pleased to see

Will improving. Love Katie, Geno and Nic

Rehab...


MONDAY 14 July 2008

Today we have begun to see the effects of withdrawal. It turns out our little

boy is a drug addict!!! Unfortunately, the impact of weaning him off the

drugs is that he is disoriented, agitated and can't stop moving! It's a means

to an end though, and it's moving us in the right direction. I’ve found it very

difficult today though, while Mark has been managing beautifully.

We had a visit from the pain team this morning. I could not believe my ears

when they seriously considered Panadol as a way to make him feel more

comfortable!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I'm not sure if I've mentioned it, but we are now pretty certain that the

Steven's Johnson syndrome was caused by an adverse reaction to

paracetamol. We can't be 100% and will have to have discussions with

immunology to try to confirm the causative agent.

The highlight today was that I got to have a little cuddle with William in an

armchair. This was in an effort to find a non-pharmacological remedy for

his restlessness. Worked for a little while...

We have also discovered that Will's ears are full of paraffin, so he is not

hearing at all well. We're waiting on ENT to come and have a look and

advise on how to manage this.

Today his ventilation has backed off again and he is back on CPAP. We

are hoping that tomorrow they will trial him off the ventilator all together -

at least for a little while.

His left eye is getting better and they have reduced the frequency of the

eye care - which is just as well because William wrestles with anyone who

tries to get near his eyes.

He is back on feeds today, after

stopping yesterday, then pulling the

NG tube out this morning.

So, on the whole, lots happening,

but definitely getting better. Here’sa photo...



Out of the Woods


TUESDAY 15 July 2008

Today was a big day for William. He has been taken off the ventilator andis breathing for himself. He still has his trache as his lungs have to build up

strength again, and at times he's needed a little oxygen, but on the whole,

he has done extremely well.

He is a little more settled today, though upset quite often. Without the

ventilator attached, he is able to move more freely, though he is still out of

it.

William is yet to open his eyes properly, and we think they hurt! It could be

a few more days yet before that happens. There is some speculation that

he has become photosensitive - not surprising I suppose, if you've had your

eyes closed for 4 weeks!

Today he started on the oral morphine, and they are continuing to wean

him off the Ketamine. Ketamine causes "vivid dreams" and sometimes

nightmares, so the sooner he is off this one, the better... The Ketamine is the

reason he is not really 'with us'

yet. Once it's gone, we should

start to see the old William

returning...

Thanks for hanging in there

everyone. Best case scenario,

we'll be home in two weeks...

Fingers crossed!

Look, no ventilator...

Planet Will



Not much today. Will is still getting better. He has started to do some

strange things due to the withdrawal and the hallucinogenic properties of

the drugs he has been on. We think he is dreaming vividly. He is also

fixating on various parts of his body and making up ritualistic sequences

with his hands, which he repeats over and over...



William is still unconscious, but he is moving around a lot more, at times. He

is also fighting back when he doesn't want something done, such as eye

care, mouth care, skin care, blood test, suction, repositioning... the list goes

on. He's one angry boy right now.

William's eyes have improved,with a reduction in the

frequency of eye care again

today.

We had more visitors today -

Aunty Meg, Uncle Stevie, Ben

and Manta.

That's it. See you tomorrow.

Nearly forgot - I had a cuddlewith my boy today!!!

Untitled Comment


Hi Vanessa

What a beautiful photo of you and Will together!

It must feel so good to have your boy back in your arms. Wills skin looks so

good!!!Come home soon with your lovely boy back to a very chilly Canberra...

Love Jancye

Our Visit

Posted by Aunty Meg on 16/7/2008 at 9:40 PM - Link

The sign on the bottom of Will's bed reads

Please don't give me

dymadonparacetomol

ibuprofen

and

I am allergic to Aunty Meg! :)

No, Really!



Stop the ride, we want to get off!!!!!



Will had a pretty good night last night. This morning, his temperature was abit high. It quickly rose to 41.8!!!!! He had wet towels and cooling blanket

going to try to control the temp. Eventually, they had to put him back on

sedation so that they could keep the cooling blanket on without shivering.

This also meant that he had to go back on the ventilator, as the sedation

can affect respiration.

This is what the cooling blanket

looks like. It is filled with

refrigerated water at around 10 -

15 degrees Celsius.

They have been taking different

cultures the whole time we have

been here, but there is nothing

obvious at the moment that might

be causing this temperature.

This afternoon, Will developed a

drug rash in response to the Vancomycin (broad spectrum antibiotic).

Mark and I immediately jumped to the worst possible conclusion - the SJS

was coming back!!!

Responding to this new

dermatological emergency, Dr Ray

appeared and reassured us that it

was not SJS recurring and that most

likely it was a reaction to the Vanc.

(This was confirmed on Friday when

the drug caused a reaction

again...).

It's a little bit difficult to see, but this is

the drug rash...

FRIDAY 18 July 2008

Will's temperature eventually came down with the

cooling blanket and remained at a moderate level overnight (Thursday).

By 9am though, Will's temperature was on the way up again. Once again,

the cooling blanket was brought in. Will was very agitated. He had a dose

of Vanc. at 8am, so Mark and I suspect that there is some correlation.



Mark phoned for reinforcements...

Today we had Steph looking after us. Very impressive person, having just

taken her first solo helicopter flight, among other things.

Will had the cooling blanket on all day, which successfully kept histemperature below 40. At 7pm when he had his next dose of the Vanc,

the drug rash reappeared within about 5 minutes and Will again became

extremely agitated. Steph stopped the drug immediately, and fortunately

the reaction didn't progress.

This evening, one of the blood cultures has come back showing evidence

of bacteria in Will's blood. While they wait to confirm exactly what the bug

is, they have started Will on an additional antibiotic which targets 'negative'

bugs. Who knew that there were positive and negative bacteria that

respond to specific sets of antibiotics????

At times today, William has been responding well. He has even been

helping when he can, by rolling over, trying to open his eyes and so on. At

other times, he has not been responding at all... His repetitive movements

are still causing concern for Mark and me.

To assist with cares today, they gave Will a big dose of Propofol. This

allowed the eye doctor to have a proper look at Will's eyes as well. They

are healing quite well, however they are dry, which is not particularly

good. There is no doubt that Will's eyes are sore. This makes it very difficultto carry out the daily care that is required, as Will protests!

Today's conversation was around whether or not to do a lumbar puncture,

to rule out any infection in the CSF. Fortunately, they did not have to go

down this road once a bug was discovered. They haven't ruled it out

completely yet, but I think they will avoid it if they can. They will continue to

observe Will, looking for neurological signs, as this is what will decide.


Temperatures were moderate overnight and continuing today. As the daywore on, we noticed Will's heart rate increasing. His oxygen saturations

were stable, but his heart rate was up around 170+ beats per minute.

The bug has been confirmed as a 'negative' strain, so the antibiotics have

been changed again, including the Vancomycin being stopped (hooray).

This afternoon, Dr Nick floored us both when he explained that the bug has

been identified and their suspicions confirmed. He went on to explain that

it is a particularly nasty bug and that children can “go downhill very

quickly”... However, Will is on the right antibiotic and is showing good signs



that he is winning. His heart and blood pressure are showing no signs of

packing it in, so at the moment Dr Nick is confident that William will be OK.

They put Will back on CPAP for the night to give him a rest. By 11pm when I

eventually decided to go to bed, Will's temperature was down to 37.1,

heart rate 140 and oxygen saturation at 97%. On the improve.

It was the end of a very long day for us all.

Visitors today - Grandma, Pop, Harry, Pat and Manta.

SUNDAY 20 July 2008

William's heart rate was much better this morning, at 122bpm. Oxygen

saturation was at 95% and temperature 37ish. Resting comfortably with the

cooling blanket still on and still on CPAP.

Will has remained stable throughout the day. By this afternoon he is off the

CPAP and back breathing by himself, with no need for oxygen. This

morning's X-ray looks clear as well and his temperature is back in the 36-37

range, so with a bit of luck, we are back on the mend again.

Fortunately, today was made easier by the lovely Dr Cathy, who was able

to explain a few things to us.

We are about to experience a rotation of the doctors, with our current

group of ICU Registrars moving on to their next placement. We've reallyappreciated the help the current group have given us and Will. We will

have to train up a whole new group now...

Never mind!

Visitors today - Grandma, Pop, Harry, Manta, Uncle Tom and Aunty

Margaret.

Stop ride want to get offPosted by Chows on 21/7/2008 at 4:40 PM - Link

Hey chaps, yesterday sounds better than the past few days- what a

nightmare. We have our fingers crossed, our toes crossed and hearts in our

mouths and are wishing upon every star that Will is okay and your beautiful

boy will be up, hale and whole and able to come home soon. Look after

each other- it is a hard road and if you want others to walk it with you we

will. Thinking of you and trying not to worry. xxxx the chows



One of the family...


MONDAY 21 July 2008

Will had a good night, until about 4am when his heart rate and

temperature started to climb again. The rest of the day did not improve

much. We had William back under the cooling blanket, which managed

to control his temperature and by the end of the day, we were back down

in the 37's. Will stayed on the CPAP today, as his poor little body is working

so hard to fight off infection, it's best to help where we can.

Today's eye examination revealed that Will's left cornea, which had all but

healed, is once again scratched, probably due to scarring inside the upper

eyelid. They have popped the bandaging contact lens back in his left eye

to give the cornea a chance to heal. His eyes have been very sore and

swollen and he continues to resist anyone touching his eyes.

William was taken off the Presidex today, so now all of his drugs (except the

antibiotics) are oral. This is a good step.

This photo was taken yesterday

when Will's temperature was under

control.


Today Will's temperature is still around the 37 mark. They have decided to

remove the PICC line and the catheter. Antibiotics will be administered via

the cannula in his left ankle. Will is still receiving oxygen to assist him to

keep his sats up, but this is being slowly weaned.

Sometime this week, Will will have a renal ultrasound to make sure his

kidneys are OK - this is just a precaution due to the type of infection he has.



That's it really. Here is today's photo.

We're nearly rid of all the tubes...

By the way, I've titled this entry "one

of the family" because the staff

included us in their Lotto entry, as wehave been here for so long... We

figure our luck has to change soon,

so maybe this is it!

Good news.



William had a good night. Unfortunately, they had to reinsert the catheter

overnight as a bladder scan showed about 600ml – holding on… We

suspect it hurts to wee.

Will also managed to pull his NJ tube out overnight – twice! He now has an

NG tube.

They did a renal scan this morning. Because of the type of bug he has

(Klebsiella), they just want to rule out infection everywhere. The results

showed that William’s kidneys are fine. Only remark was that they are in

the upper range of normal for size. As William also is in this range overall, it

is not surprising that his kidneys match!

This afternoon, another doctor came by to do an echocardiogram. Again,

to rule out infection, this time of the heart (valves in particular) as the

Klebsiella bug is often associated with this type of infection. Good news is

that William’s heart is fine.

Very exciting news – no pumps!!! All of Will’s regular drugs are now being

given orally, with only the antibiotics going in IV, through the cannula. They

have actually removed the pumps, so it’s looking good! He still has hisfeeds going via NG, so there is one pump associated with that. He is off the

ventilator again, so definitely making progress.

Eye examination today showed some improvement, after having the

bandaging contact lens inserted a couple of days ago. A lens has been

reinserted and they plan to review again on Monday. This is an

improvement from the daily examinations.

The eyes are currently the main thing holding up Will’s recovery. This is

because he needs to be sedated when they look at his eyes and sedationmeans we have to have access to ventilation if required. This in turn means



that they can’t take the trache out. So overall, the eyes are currently

prolonging our stay in ICU. We did have a visit from an eye surgeon today

– wait and see re: further intervention.

Speaking of tracheostomy, Will had his tube changed today. He also had

a bath!!! This was a bit scary for him as he still isn’t opening his eyes. After having eyes closed for more than five weeks, it’s no wonder. Apart from

being sore and still under sedation, he is probably photophobic.

Will was very interactive today. He has been doing lots of nodding in

response to questions. He even did some counting with Mark. Mark asked

him to count to five, so he patted Mark’s hand five times! Just to prove it

wasn’t a fluke, Mark asked Will how old he is, so he patted Mark’s hand four

times!!!

Big news today is that we had a visit from the Immunology team. After along conversation, instead of making a recommendation about

challenging or testing the drug reaction, or even speculating as to which

drug is the culprit, they actually extended the list of drugs that William

should never have again!!!!! So now, it’s simply no paracetamol and no

NSAIDs. Great. They did say that they would contact someone who is

working on drug testing, just to see if they have any bright ideas. Here’s

hoping. So, in future, for pain it will be codeine and for temperatures it will

be the old-fashioned approach…

They are trying to get him sitting upmore and being stimulated to help

him wake up. We also had a visit

from the Physio, who will start on

some rehab as soon as Will is ready.

Here’s a photo of Will after his bath

today. He is looking shiny and new!

THURSDAY 24 JULY 2008Will had another good night. He is

still managing to keep those febrile

temperatures at bay. Hooray

for Willie!!

Here is William giving his Hairy Bear a

cuddle (provisional name). This

lovely bear came from Samantha's

teacher, Miss Briggs and all the

staff of Unit 4 at Weetangera PS -

thank you.



The plan is to wake William up more and more each day, reinstating his

concept of day and night. So, today we’ve had him sitting up and have

been talking to him, reading, listening to music and movies… We have

managed to establish an easier mode of communication, using thumbs up

or down, in preference to head nodding or shaking. It seems the thumbs

are easier.

Willie opened a couple of presents today. He enjoyed feeling the

packages, tearing the paper and exploring what was inside. Thanks to

everyone's generosity, there are many more packages for him to open

over the coming days, as he becomes more alert and awake.

Best news of all though is that

we had him laughing!!!

I bet you're wondering whatwas so funny. We were talking

about what Grandma's secret

weapon would be. Knitting

needles!! Apparently it really

tickled Will’s funny bone as he

had several big belly laughs on

the subject. Good on you Will!

We also discovered that Will has not forgotten his Karate moves. He gave

a big right hook as I said something about bashing Daddy! He was Karatechopping everywhere!! Still not opening his eyes, but we feel we are

getting closer. The Physio, Sarah (ex Canberra person - Weetangera no

less) was pleased to see William moving all of his limbs so energetically. Dr

Nick seems very happy with Will's progress too.

All in all, an excellent day! Hopefully there are many more of these to

come.

Great to see such an improvementPosted by Anonymous on 25/7/2008 at 10:27 AM - Link

Hi guys, here at SHHS we are keeping a close eye on Wills improvement. Its

great to see how far Will has come in the last few days and with such great

care that he is getting from doctors and his PARENTS it is not a surprise. You

guys are doing a great job!!! Keep battling along, and keep on making him

smile.... Thank you so much for taking the time to keep us informed. Take

care

Thomas



Another great day!

Posted on 25/7/2008 at 11:07 PM

FRIDAY 25 July 2008

Today we had a visit from the play therapist, Michelle. She left some toyswith Will for the weekend, among which is a bumpy ball, which he has

been playing with for most of the afternoon.

I did take some video footage on my camera, but I haven't worked out

how to upload it onto the blog, so we'll have to be content with photos. I

was amazed at how well Will played without being able to see!

We had lots of laughing and joking, singing silly songs, bashing people up...for most of the afternoon.

We had a visit from the OT, Fiona (she knows you Tasha... It's true, you can't

go anywhere!) She came back with a little chair for Will. We tried him in it

and it seems to be a good fit. Tomorrow we will try to take Will for a little

spin around the hospital, just for a change of scenery.

Will has not had the necessary

adjustments in this photo (just for allyou OT's who are looking at this

photo...)



Best thing today though... Will has started opening his eyes!!!!!! It's

wonderful!

William has persisted with the eye opening at times throughout the

afternoon and evening. Tonight he was throwing the ball at the nurses, Kat

and Jen. He told them where to stand, watched carefully, took aim, andeven tried to sit up straight, before pelting the ball as hard as he could.

Great fun and a great step.

This evening when I went in to see Will after dinner, he had his eyes

opened. He took one look at me and burst into tears. Turns out he was just

feeling a bit emotional and wanted a cuddle. Of course, I happily obliged.

We are expecting Will to have an LBO in the morning to confirm that his

airway is sound, before they consider removing the trache. As he opened

his eyes today, I think they will consider removing the trache in the next fewdays. We hope so anyway...

Funniest thing today, Will cracking up at the idea of Grandma throwing

potatoes at The Shredder!!!!!! (TMNT bad guy). We had him in stitches - just

had to say "potatoes". Hilarious!

Untitled Comment


Hi Vanessa

How lovely to see William smile. It made my day and I sat here smiling too!!!!I t really looks like William has turned a major corner and we will have you

back in the ACT really soon.

Take Care

Jancye

Still Digesting But In Awe

Posted by Sandra Dehoogh on 27/7/2008 at 9:29 AM - Link

Hey Mark and Vanessa

Sitting here reading through your blog has given me a more completeunderstanding of Wills battle and your journey right along with him.

I have no idea how long I have been sitting here trying to wrack my brain

trying to figure out what to say but desperately knowing I wanted to

encourage you. And then I realised what was especially meaningful for me

when I was there watching my baby struggle to breath was YOU GUYS. Just

been able to "be", to sit and digest events and emotions, to verbalise and

process medical issues, family issues, just the logistics and implications of

being way out of comfortable daily lives and facing unknown outcomes.

Thankyou. ... for being there, for being open and real, and for spreading

yourselves to other people even though you most probably felt way spreadenough.



But most of all its so awesome to see Will moving in the right direction....

your mini Mark is looking so much more like him every day. :D He has come

a long way.

Hiz ..who got home Friday night

Sandra

HiZ Child, Marks best decision and Mumma to [email protected]

Leaps and bounds!



Happy Birthday Pop!!!

Today has been a wonderful day! We started off by going to theatre. I

was able to stay with Will right up until they started the anaesthetic. The

procedure only took half an hour and afterwards the ENT's came to tell us

that Will's airway looked good and that they had taken the trache

out!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! They did say there could be problems, but they

weren't expecting any. So, needless to say, we were delighted.

We noticed on the way down to theatre that William was very troubled by

the sunlight, so later in the morning I went out to buy him a pair of sunnies.

He is looking very cool... He is also able to open his eyes a little more now -

this has improved his aim considerably!

Also note, no trache!!!! Yay!

William is beginning to speak again,

although he is quite difficult to

understand - this will improve in the next few days I expect. We did

phone Pop to wish him a happy birthday. William managed to say "Hi

Pop" on the phone - now that's a good birthday present!

We had to come down and sit with Will overnight as he woke up quite

scared. Fair enough. There's a limit to how brave a four year old shouldhave to be!!



So, the hard work has really started now. It will take a while for Will to get

back to his old self and I expect there will be a few more sleepless nights.

We are just so happy that Will is going to be OK and that he is back with us

again.

SUNDAY 27 July 2008Happy Birthday Aunty Deb and Cousin Matt!!!!!!!!!!!

Will was on fire today! He played for most of the morning. He had a

shower, a drink of milk (still has NG tube, but we are starting the process of

getting him back onto solids), pegged the nurses with his ball... He even sat

out of bed for a little while.

Will has developed a new piano

playing technique...

This afternoon, we popped him in

his special chair and went for a

spin around the hospital. We

visited the Starlight Express Room

for a little while, showed him where

our room is and even went outside

to the Fairy Garden. We came

back in when Will got a

little cold. He was also exhausted! He slept soundly for 3 hours after a day

of serious playing.

Ready to go... Elephant is coming

too!

Here we are in the Fairy Garden

with one tired little boy...

Tried to get William eating again tonight. He had a tiny taste of a few

things (carrot, mashed potato, apple) but nothing really took his fancy. He

managed to drink around 60mls of chocolate moove though - small steps.



This afternoon there was talk of moving Will to the ward. As the ICU is full, if

they were to get a new admission tonight, we would be the first to move.

This is something we've been expecting and if not tonight, then probably

tomorrow would be my best guess. Will is to have a proper eye

examination tomorrow, for which he will be sedated with Propofol, which

they won't do on the ward... Not sure exactly how they will manage this,but we'll find out soon enough.

Apart from the eyes tomorrow, we might be able to visit the physio gym

and really start working on getting Will moving again. We'll definitely have

another walk around the hospital, maybe a visit from Michelle, the play

therapist, or Fiona the music therapist... So much to do, so little time...

We've started packing up, just in case we only have short notice. It's

incredible, the amount of "stuff" you can accumulate in 5 weeks... One of

us will be able to stay with Will on the ward. We'll arrange a room in thenurses’ quarters so that we can each take shifts with Will.

Will had a visit today from Greg who was in Sydney for a gig. Well done

Oliver and Lucas for making such a terrific Get Well card!!!! It's beautiful!

Tonight Will's sitting up in bed with the television on, playing with his Hairy

Bear, his elephant, cushion, and anything else within reach. We are hoping

he'll be nice and tired so that we can all get some sleep...

Woo Hoo! Such improvement!Posted by Sally on 28/7/2008 at 8:32 PM - Link

Terrific to see (and read about) Will's daily improvement. Before we know it,

you'll be back in Canberra. Best wishes from all of us.

Sally

Untitled Comment


Fantastic news!!!!

Love William’s sunnies!!!!!!!!!!!

Hang in there. You will all be home soon.

Jancye

Life on the Ward...




MONDAY 28 JULY 2008

Talk of moving to the ward continued today with Will continuing to revert to

the little guy that we all know and love.

William fighting with Mark - check out those karate moves!!!

Will had a physio session with Sarah. He rode up and down the ICU corridor

on a push along car - much more than I expected, as Will is unable to

weight bear at the moment!!! Check out the photo!

3:06pm



After physio, Will was absolutely shattered! He went straight off into a

sound sleep.

3:29pm

Will had another eye examination this afternoon, which required sedation

(Propofol and Ketamine). Unfortunately, Will’s eyes have not progressed as

much as we would have hoped. He still has scratches on his cornea and

ulcers on his eyelids. They took the lens out of his left eye, as it had not

improved as much as they would have hoped, therefore not warranting

continuation at this time. This on top of the exhausting physio session led to

a very tired William.

This evening we moved to the ward. Will’s nurses took him for a “lap of

honour” around the ICU to say good bye to all the nurses – talk about a

hero!

We are now on C 1 North and we have a lovely window - not that we can

open the curtains yet, due to Will’s eyes. The ward is quite different to ICU,

but a big step in the right direction - closer to home. There are also quite a

few people here that we met in ICU, it’s nice to have so many familiar

faces.

Now that we are on the ward, we have to move out of the parent hostel,which is reserved for ICU parents and has been our home for the past 5 ½

weeks. While we’re on the ward, one of us will need to stay with Will, as we

don’t have 1:1 nursing anymore… We are planning to get

accommodation at Vera Adderley, the nurses’ quarters and we’ll take

turns to sleep or look after Will.


Today, Grandma and Manta arrived to visit for the day, courtesy of our

chauffeur, Michael. Mark and I are already exhausted after just one nighton the ward. So, we negotiated with Pop to let us keep Grandma for a bit



longer. Mark spoke to Sam, our social worker, who helped get

accommodation at Ronald McDonald House for the four of us. So,

Grandma and Manta will be staying with us at least until Sunday, pending

availability of accommodation beyond that date.

We had a visit from the general paediatrician on the ward, Peter, and hisregistrar, Natalie. Lovely folk. There will be ongoing conversations

regarding our return to Canberra and at what point this should happen.

Currently, there isn't really a plan.

We had a visit from the dietician, Maggie, who has suggested that we start

on bolus feeds as a step towards getting back onto oral feeds. We’ll try to

get Will eating and drinking in between times.

Samantha did a great job of playing with William and looking after him

today. She will be a great help in getting William back on his feet. Wespent about an hour and a half in the play room where they did some

serious playing together. This was followed by physio, where Sarah had Will

pedalling a tricycle and doing some weight bearing, which was a bit

painful due to the tightness in Will’s legs. Once again, William was

completely exhausted after physio and went straight to sleep when he got

back to his bed.

Linda, the pharmacist has indicated that instead of a list of drugs for William

to avoid, she will supply us with a FOLDER!!!!! We've also asked her to give

us a list of safe options... Should be fun. Linda had a couple of graduatepharmacists with her, so I gave them the skin photos so they could have a

better understanding of the path that William has been on. In fact, I've

been giving the photos to anyone who has shown an interest, as a way to

help people understand what this condition looks like.

Will was disconnected from his feeds for several hours today, so when they

went to check the NG placement, his tummy was completely empty. This

meant we had to convince an exhausted William to have a big drink of

milk in order to get something in his tummy that could be aspirated. Took a

while, but we got there eventually.

We had a lovely dinner tonight, thanks to our personal chef, Kathleen!

Mark stayed with Will all night. We have to give Will his eye drops every

couple of hours, so it’s a tiring exercise for all concerned, including Will.

Tomorrow I will take Grandma and Manta on a shopping expedition to get

some supplies for their stay.


We sent Mark to bed and Grandma, Samantha and I took over. Will is

having a lovely time playing with Samantha.



Will was due to have a bolus feed this morning. In order to again check the

placement of the NG tube, he needed to drink something. He ended up

drinking his whole feed through a straw!!! What a star!!!

I talked to the pain team about the medicines Will is on and particularly

what they taste like. They are going to replace the oral morphine with avariation that tastes better, so we can try to get him off the NG tube

altogether. Apparently the Diazepam tastes OK… The pain team will

advise on how to sedate Will for future eye examinations, if at all, once we

have a better understanding of what the eye team need to do. I think the

plan is to try some play strategies first and see if we can get Will to

cooperate. Otherwise, the sedation he would have to have on the ward

will knock him out for the day… We’ll wait and see I guess.

Physio this morning had a focus on kneeling. We thought the morning

timeslot might be better, but William tired pretty quickly. It's going to be along process... Will again had a big sleep after his workout.

We also had a visit from Taronga

Zoo, with some animals for the kids

to look at. William wasn't

particularly interested, as he was

sound asleep and we had to wake

him up. Samantha was happy tocheck out the baby snake though.

This afternoon Will had his eye exam,

and with help from the nursing staff and

the pain team, and Will of course, we

managed to get through it with a little

nitrous gas and a story!!! Amazing. Wewere all really impressed with William

and now have a plan for the next eye

exam too.

Last thing today, we moved rooms so

that they could set up a respiratory ward in the room we were in. We still

have a window seat and are back with a full house of 6 kids, ranging in

age and issue...

Can't wait to see what tomorrow will bring...



Show me the way to go home...



Not much new information. Will had physio this morning and the musictherapist, Fiona attended as well. Takes me back to the Good Ol' Days at

EIS...

Will's oral intake is improving each

day. With a bit of luck we will have no

need for the NG tube in a couple of

days. Getting rid of the catheter may

take a little longer, due to the extent of the skin ulceration from the SJS - still

not quite better...

Mark and I had a discussion today about the timing of our move back to

TCH. Having spent a couple of days on the ward, we realise that most of

William's care can be delivered at TCH, so we've asked the nurses and the

social worker to start the wheels in motion to transfer us, ASAP. It will

depend on Canberra accepting William and the relevant specialists being

able to look after William, but assuming this can be achieved, we will ask to

go. We've been in Sydney for 6 weeks, as of today!!! It would be nice to

be a little closer to home.

Amazing

Posted by Sandra Dehoogh on 2/8/2008 at 9:07 AM - Link

He hasn't looked back has he :)

Untitled Comment

Posted by JANCYE on 2/8/2008 at 9:41 AM - Link

Fantastic progress. It is great to see Will improving in leaps each day.

Canberra misses you all.

Jancye



WANTED: ruby slippers...


THURSDAY NIGHT 31 JULY 2008

After his eye care, Will took off his sunglasses and exclaimed “I can see!” It

was very funny.

FRIDAY 1 AUGUST 2008

In physio this morning Will was standing and cruising. His standing has

become steadier. They had planned to trial Will in a standing frame, but

decided he was too good for that and instead tried him in a little walking

frame with forearm support. Needless to say, he was fantastic! They also

decided that due to such fine progress, they would fast-track Will. Sounds

good, but essentially means they will put him on the list for physio over the

weekend – all good. We

swapped our blue chair for a

regular little wheelchair today,

also because Will is improving

and doesn’t need as much

support in sitting anymore.

Will had a rest after physio, but

was awake for a long stretch in

the afternoon. We walked intothe playroom on the ward…

and Will, Manta and Libby played

with the farm house for a long

time!

Then, we played Fish! with Manta and

Grandma (Will and I were a team). I

was not sure how Will would go,

particularly in relation to his vision,

however he did just fine.



This afternoon, Will played on his DS!!!!! All of this is very reassuring as he

can obviously see reasonably well.

One of the little boys on the ward turned 5 today, so we all went and

joined in on his Birthday party in the playroom. Will ate a chocolate frog.

William also managed to eat a little for dinner – carrots, mashed potato

and apple juice. Mmmmm… sounds good doesn’t it?

This evening we had a visit from Dr Eisman. He would like the NG tube to

stay in for another 48 hours or so. He also indicated that they would look at

taking the catheter out on Wednesday. The cannula can come out now!

Today Will managed to have all his feeds and all his meds orally! This is an

important achievement as the NG tube coming out is dependant on Will

being able to have everything he needs orally!

The physios have given William some resting splints, we call them Bionicle

legs. William will be wearing these overnight and at rest times.

SATURDAY 2 AUGUST 2008

We had physio with Mel, in the

playroom. Here’s Will cleaning the

table (it’s amazing what motivates

some people!).

And here he is, relaxing after a hard

morning of gruelling play! (Note the

Bionicle legs.)



Today we got the green light to

take out Will’s NG tube!!!!!!

Hooray!!! Here is a photo of an

NG-free William, looking devilishly

handsome!

SUNDAY 3 AUGUST 2008

Physio again this morning. Today Will is managing to stand on his own for

short periods of time. He’s standing up nice and tall! Today’s motivation?Teenage Mutant Ninja Turtles and a crazy Godmother!

We took William for an outing today, over to Ronald MacDonald House.

Will, Manta, and the aforementioned crazy Godmother had a marvellous

time playing ball games outside.

This is “Manta in the Middle”.

All good things must come to an

end and unfortunately, we had to

say “goodbye”.

Breaks your heart, doesn't it?



MONDAY 4 AUGUST 2008

Physio this morning, and William was again promoted, this time to a

wooden trolley, with four wheels! We phoned Pop after physio to ask him

to make one for when Will gets home as it’s a TADACT design. “Pop the

Builder” is on the job!

We learnt at physio that Will can get himself up off the floor. Excellent work!

We spoke to the Registrar today, Natalie. She contacted urology and

ophthalmology to try and work out where things are up to and when we

might be able to transfer back to Canberra. Urology wants to wait until

Wednesday. This is when William will be off all the narcotic medications.

This is important because these meds can cause retention – this is not what

we want, as if it does occur, he will have to have the catheter re-inserted.

We visited the eye clinic today. Part of the plan is to get Will more used tothe setting, as it is a bit scary. This is something that he is very likely to

experience quite frequently in the coming months. We saw the orthoptist

first, who tested his vision. He has 20/20 vision in his right eye (hooray). He

had difficulty opening his left eye and could not comply with the testing.

Not sure if this was due to fatigue or pain??? We’ll have to re-test this eye.

The assessment of his corneas showed some improvement in the left eye,

with the scratch that was in the centre seeming to have repaired itself. This

is very good news.

Visit today from Aunty Jennine, Ben, Lara and Mitchell. Ben and Lara

played with William while I fed him his dinner. It seems that with just a little

Ninja Turtle distraction, you can get Will to do just about anything!!!

Latest news this afternoon is that we might be looking at Friday for a

possible transfer date. Here’s hoping!

Visit from Dr Ray this evening. Ray will have a look at Will’s skin before we

go, just to make sure everything is OK. There are a few little spots that

warrant a look. This will help us check one more box and feel morecomfortable with Will’s recovery. Next thing is how to keep Will’s skin out of

the sun for the next 12 months!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Untitled Comment

Posted by Liz on 5/8/2008 at 7:53 PM - Link

It is wonderful to see Will looking so.....much like Will again. Can't wait to see

you all back home. Harry can't wait either!

Liz



Wordless

Posted by Sandra De on 6/8/2008 at 8:28 AM - Link

Reading your blog lately always makes me smile. And I'm wondering if you

guys have "exhaled" yet, have you been able to relax in your heart and just

"walk out" with Will the rest of him getting his strength back?

Looking forward to the next blog been published from Canberra

Hiz

Sandra

Getting closer...


TUESDAY 5 AUGUST 2008

Today we visited the Starlight Express Room. Will really wanted a balloon

elephant, which Captain Starlight made for him last time he visited.Unfortunately, today's Captain Starlight did not know how to make it so

that it was EXACTLY the same as the last one. Not for lack of trying mind

you.

We also had a visit from the Clown Doctors today which was nice. Will was

a little tired though.

Will is taking his glasses off for short periods now, as his eyes get more used

to the light.

Here he is without his sunnies - we

were playing Go Fish!

WEDNESDAY 6 AUGUST 2008

William's catheter was removed this morning - finally, no tubes!!!!!!!!!!!!!!

William is able to move around much more freely now. He decided he was

going to walk on his own this morning, and took off!!! He walked for several

metres on his own, then we proceeded to do a lap of the ward with his

trolley.



By the time we had physio at 10:30, he was beginning to get a little tired...

That didn't stop him though. Turns out physio is much easier without a

catheter bag in tow. He helped Sarah set up an obstacle course and

insisted on it going right across the room. Then he went over the course - in

both directions - several times. When he reached the end of the course, he

climbed up on a giant block and struck a triumphant pose.

Check it out...

Today the Sydney Roosters visited

the hospital. William was asleep

when they came around the ward,

but we managed to get to see

them downstairs in the physio

gym. Here is a photo of William

with Willie Mason and the verylovely, unusually tall and extremely

talented Dr Natalie...

And here is Willie showing us his

muscles, sporting his new Sydney

Roosters cap.

William has become quite good at

wheeling himself around in his

wheelchair too. Not so good on

the corners, but there is definite

potential. Even though he is

beginning to walk, he will need assistance for a while yet. We'll need to sort

out equipment somewhere along the way...

So, with Will's catheter out, we are just waiting on the "tick" from

ophthalmology and hope this will be tomorrow when they review Will'seyes. Once we have the tick, along with the required management plan



and referrals, Dr Natalie will make the necessary arrangements for us to

leave the hospital. We are still hoping that this will be very soon, but we

have learnt not to count our chickens before they are hatched! So, we'll

keep you updated. Hopefully we'll see you all soon. We're planning a

party when we finally get home, so keep that day free...

Will, Will Sutton - Agent 004 1/2

Posted by uncommondezign on 7/8/2008 at 9:45 AM - Link

Good to see Will has dressed for the occasion in his 'formal' t-shirt.

He strikes a very handsome pose.

So debonair!

love

Aunty Meg

Heading home - at last...


THURSDAY 7 AUGUST 2008

We have been here at Sydney Kids' Hospital for exactly 7 weeks today!

We will be heading home to Canberra tomorrow!! We have managed to

link in with the relevant teams in Canberra, so we will be discharged to

home, not to the hospital as originally thought. HOORAY!!

So, apart from that wonderful news, here's what has happened today...

William has been a bit grumpy, on-and-off today. Not sure, but may be

having some withdrawal issues, as he had his last dose of Diazapam last

night, so now he's off all the nasty drugs! Might just be that he is tired and

has had enough of this whole hospital thing! We certainly feel that way.

William had physio this morning and is coming along nicely. We have our

homework to go on with when we get home.

William had his eye review today, and they managed to link us up with an

ophthalmologist in Canberra. In fact we have an appointment lined up for

next Wednesday! We will be returning to Sydney on 18 August to see the

eye team again, and will probably have to keep coming up for reviews for

a little while. We also have a physio appointment on Monday at TCH. So

everything is pretty well sorted. We are waiting to hear about which

paediatrician we will be going to - it will probably be Paul Jenkins. We will

return to Sydney for a review with the dermatologist in a couple of months.

Today I've started thinking about all the thank you's we need to send - it's a

long, long list and it may take a while. All the people we've encountered

throughout this whole experience - people we know and people we have



met - have been absolutely amazing! Some of the people we've met

who have been going through their own experience with a sick child have

been truly inspirational. Apart from the horrible circumstance that has

brought us along this path, everything else has been wonderful.

We have been inspired and uplifted by people who are truly remarkable -but they don't even know it. This has been a life-changing experience for

us, in many ways, and we will take a lot away from it. Most importantly, we

still have our William and we will be taking him home with us tomorrow.

We look forward to seeing you all very soon.

Untitled Comment


Welcome home everyone!

Hope to see you really soon Vanessa. Try and rest....

Know exactly what you mean about a life changing experience. I am sure

William has also touched and inspired people in many different ways also.

You are an amazing family. Hang on to each other tightly.

Jancye

Home Sweet Home


FRIDAY 8 AUGUST 2008We arranged our transportation home yesterday evening, so spent much

of last night and this morning packing up what we could. It's amazing how

much you accumulate in such a short space of time.

We had a physio session this morning and then just had to wait for all the

final arrangements, discharge summaries and so on, before we could set

off for home.

We promised Samantha we would pick her up from school, so we were

working to a very strict deadline.

It was obviously time to leave, because my camera ran out of batteries in

the middle of physio! How's that for a 'sign'?

Just to complicate the final moments of our stay in hospital, we thought

we'd mention that William seemed to be experiencing some withdrawal

symptoms.... Perfect timing really, as Natalie had just managed to finalise

and print Will's discharge summary (sorry!). Anyway, after a dose of diaz,

William was good as new - pity we can't say that for the discharge

summary!



We said our most important farewells - to Dr Ray and Dr Natalie. We didn't

visit ICU before we left, as we promised we would, but as we will be back in

Sydney on 18 August, we will be able to do it then. Hopefully Will will be

able to do a few Ninja fighting moves by then.

We all managed to fit in the car....JUST. Will travelled reasonably well,

although it was challenging trying to keep the sun off him.

We arrived at the school with about 1 minute to spare. Mark was

determined to get there, so there were no toilet stops, not even to save a

kidney.... It was lovely, if a little emotional, to see so many familiar faces.

Will also got to see Matt and Sally from Preschool, and Miss Briggs,

Samantha's teacher. It was terrific. Unfortunately, Harry wasn't there today,

but we'll see him soon.

Then home! The dog's and the bird are very happy, as are we.

I had to go to the pharmacy to get Will's diazapam. Unfortunately our local

pharmacy doesn't stock it!!! Neither do any of the nearby pharmacy the

pharmacist phoned!!!!!!!!!

Anyway, after much toing and froing, Jenny, our local pharmacist,

managed to devise a cunning plan to get the drug from the hospital to a

nearby pharmacy! Turns out the hospital won't fill our prescription as it

doesn't come from TCH!!!! However, they will loan the drug to another

pharmacy so they can fill it! Anyway, all worked out in the end. As it turns

out, Will didn't need any this evening anyway!

So much for the prospect of having a sleep in our own bed - Samantha

negotiated to sleep there, and William just fell asleep - hard to argue with

that! It didn't matter anyway as it was the lack of beeping machines and

crying babies that really counted. Will had a good night sleep as well,

which is probably the main thing.

Samantha had an emotional evening. She is tired and she misses

Grandma!!! I know she'll be OK though. She's tough! (she has to be)

SATURDAY 9 AUGUST 2008

Samantha and William have been playing all morning, since Manta

returned from soccer. It's lovely. They seem to remember that they like

spending time together. Manta is "Miss Helpful" and is looking after William

beautifully.

The plan is to relax for the rest of the weekend (in between opening mail,

unpacking, cleaning...), ready to start the next round of appointments on

Monday. We will be trying to see as many people as possible as well over the next little while and will be popping in to see people whenever we can.



We are planning to take Will to preschool on Monday morning for the first

session and see how he goes. We'll try to build up the time he spends there

as he gets stronger. He has a busy day on Monday, so we'll try not to push

him too much.

I will keep 'blogging' throughout William's rehabilitation, so stay tuned...Bye for now!

Home Again

Posted by BrusselsKat on 17/8/2008 at 3:25 AM - Link

Hi Guys - glad to hear you're all home and William's looking great in the

latest photo you posted.

We've been cruising the Baltic and North Sea for the past two weeks and

so have been off the air with no internet access. We just got back tonight,

so I will write a Letter from Belgium tomorrow to provide an update. Katie

xxx

Update from home.


SUNDAY 17 AUGUST 2008

How slack, over a week since my last update.

It’s been a very busy time since we arrived home over a week ago. William

has had numerous appointments, along with visitors, and recuperation in

general.

We took a couple of days to unpack and remember where we were.

We’ve had this strange feeling, as though we’ve been ‘transported’

between placed and time…

On Sunday, we attended a couple of church services to thank the people

who have been praying for us over the last couple of months. Monday was

appointments – paediatrician and physio. Of particular note however,

William went to preschool for an hour or so in the morning. Aside from the

fact that he has some mobility and vision issues, it was as though he had

never been away. He had not wanted to go in the morning, but shortly

after he arrived, he announced that he wanted to stay all day! So on

Tuesday, we set out intending to stay as long as he wanted. He made it

through to 1pm before his muscles packed it in – not a bad effort though!

He had a lovely time playing with his mates. Harry and Noah took excellent

care of their friend, rarely leaving his side.



This is Noah helping William climb

into the sandpit.

And no, you can never have too

many hats!

Wednesday we visited the

ophthalmologist in Canberra. It wasquite a different environment to the

clinic at the Prince of Wales - much

more relaxed and child-friendly. Willie did well, though we are still unsure

about his left eye… We also visited our local GP in the afternoon to catch

her up on the saga and to get a fist full of referrals for all of these specialists.

Thursday was physio again. We will be having physio twice a week for the

next little while. It’s really hard work for William, but he is getting stronger

every day. He’s walking on his own more and more. Given the right

motivation (or distraction - it depends how you look at it) it’s amazing whathe can do. He tends to crash and burn afterwards though!

Saturday night William was complaining of pain in his eyes. It is not unusual

for William to have difficulty opening his eyes, or tolerating the light, but this

is the first time he has been woken with pain in his eyes. As you can

probably imagine, this has caused us some concern, so we are keen to get

to the eye review on Monday at Prince of Wales.

Aside from the highlights mentioned, each day is just about managing life,

trying to keep William happy (which can be difficult at times) andencouraging him to eat, to open his eyes and to use his muscles. Coupled

with this is helping Samantha to feel good about everything and to not feel

that she is getting a raw deal. She has been amazing – she helps her

brother and is so kind and gentle. It does get a little difficult at times

though, when it’s one rule for Will and another for Samantha, but hopefully

that will not be the case for too long.

Tomorrow morning we are off to Sydney for our review at the eye clinic.

We will probably stay overnight, as it will be a long day for the kids. We

hope we will have time to catch up with a few of the people from Sydney



Kids while we are there. We will definitely be back on Tuesday as we have

a physio appointment at 2pm…

Quick update from Sydney trip


TUESDAY 19 AUGUST 2008

We visited Sydney on Monday for a review at the eye clinic. William was

extremely uncooperative, despite everyone's best efforts to encourage

him! We had a second try a little later, with Michelle, the play therapist

there as well - still no good though. As we are quite concerned about Will's

eyes, it was extremely important that the doctor could have a look. We

ended up having to stay overnight at Ronald McDonald House so that

today they could sedate William today in order to get a good look at his

eyes.

After much protesting from Will and with the help of some laughing gas, we

managed to calm him down long enough for the doctor to have a look.

(Also seems I'm getting very good at making up stories involving mild-

mannered family members who defeat "the Shredder"! The power

of GOOD vegetables is far greater than the power of the EVIL Shredder.

The added bonus is that the outcome of the contest is often a nutritious

soup!!!) We were able to get enough of a look at Willie's eyes to determine

that there has been some improvement. We will be returning to Sydney for

another review in 3 - 4 weeks. Meanwhile, we will continue to see the eye

doctor in Canberra on a regular basis.

We managed to touch base, albeit briefly with some of our favourite

people - Tracy, Julia, Mary-Lou, Paul, Natalie, Ray and Sarah. It's a little

weird now that we aren't in the hospital as you tend to feel a little bit out of

place, but it was certainly lovely to see these excellent folk! We even

managed to have a game of cricket in the physio corridor, with Sarah -

that was fun! I was in trouble for Natalie for not updating the blog this week

- so I hope you are reading this now Natalie...early update, just for you!

Next problem is William waking up during the night crying, throwingpunches and saying "I can't", among other things. This is along with the

extreme behaviours that are emerging in relation to his eye care. It seems

to us that there are a few things happening. One is that he is remembering

bits and pieces from the past couple of months, also that he is

experiencing some frustration at his body not working as it should, and

possibly he is attempting to exert some control over what is going on

around him. All of this is completely understandable, but difficult to

manage when the things he doesn't like (like the eye care) are really

important! So, tomorrow I suppose I'll be back to see the GP to discuss a

referral for some counselling for Will.



I will also be popping in to work tomorrow to touch base there and start to

talk about plans for returning...

That's it for now!

Untitled Comment

Posted by Sandra De on 21/8/2008 at 1:17 PM - Link

Hi guys

Just letting you know that I am still peaking on your blogs and enjoying

seeing Will overcoming. Was going to say that it would be great when

normal happened for you again BUT, considering I don't think I walked

away from Sydney the same, normal may not be on the cards for you

either. More like "profoundly changed"; perspectives sharper; life simpler.

Feel free to contact me

Hiz

Sandra Dehoogh

[email protected]

0411752976

Untitled Comment


Hey there Ness, Mark, Manta & WILLLLLLLLL!!

Will, you look fantastic and love seeing your smile!

I haven't been on to the blog for a while and it's just phenomenal to see

Will's wonderful progression.

Keep up the amazing recovery! You're my new superhero - Super Wi-i-i-i-i-i-l

!!!!!! Go the Super Suttons!!

Hope to see you soon,

Evie x

Long overdue update...


16 September 2008Well, thought I'd better get my act together and provide a bit of an

update, for anyone who is still following Will's progress via the blog.

We've had a pretty good few weeks, with a few ups and downs along the

way.

In relation to eye care regime, we're now at the point of making threats!!!

Saddest part about it is that it actually works... Will has turned a corner and

is cooperating for eye drops now!



Despite his cooperation, William's eyes seem to be getting in the way of him

returning to life as usual. He is frustrated at not being able to do things. He

only lasts a short time at preschool because his eyes get tired and sore. On

Sunday he exclaimed "I can't do anything" as he threw himself around in

the car - he was frustrated because he was having trouble opening his

eyes due to the sunlight and glare.

Will had to have his most recent eye examination under anaesthetic. This

was on Friday 12/9/08. It was a very long day! All the nightmares that he

had been having, which seemed to be starting to fade, came back with a

vengeance following this little adventure. Unfortunately, Will also had a

granuloma on his left cornea, which had to be removed. Needless to

say, his eye was a little sore afterwards. It really highlighted to us how

difficult it is going to be finding pain relief, as when we got home and

William started complaining of pain and we had nothing to give him. We

eventually figured it out after a quick trip to the GP, that thedexamethasone drops (a steroid) would provide relief. We will really need

to get a plan together though for future reference, so that we always have

something on standby.

So, yesterday we were supposed to go to Sydney for an eye review,

however, following Friday's examination, there was no need for us to go.

So, instead we decided that we would do something nice! We went to

Sydney anyway and stayed for a couple of nights at Darling Harbour. We

spent yesterday at the Aquarium, which turned out to be a good idea, as

most of the exhibits are dark, so Willie managed to open his eyes.

Here are a few photos from our lovely day...



After a lovely day

yesterday, Willie had a bad day

today, in terms of eyes. His eyes

were hurting a lot - not sure why.

So, he ended up sleeping a lot.

May have been too muchexcitement yesterday... We have

an eye review on Friday.

Last week we had an immunology consult. Willie had a bucket-load of

blood taken to start testing for various antibodies in a vague attempt to

find a possible viral cause for the SJS. The whole debate about testing thedrugs will continue for some time I think, possibly never actually reaching a

conclusion. Anyway, we wait for the results which should be back in about

6 weeks.

Willie has been doing hydrotherapy at the hospital, with his physio, Alyson.

He's loving it. Here are a couple of photos from the first session on the 4th

September. He did have very tired legs the following day however...



Most exciting news of all is that William made a triumphant return to

PeeWees on the final day of the season. He even managed to join in the

soccer game, running around on the field and kicking the ball a couple of

times too! He was able to collect his trophy, which made us all very proud,

not to mention a little teary! Here are some photos of William at PeeWees

and getting his trophy!

Speaking of teary, Samantha got a special principal's award a couple of

weeks ago at assembly for displaying resilience and for helping her family

while Will has been sick. Well I tell you, I was very emotional, as were quite

a few others I would say. Good on you Manta!

I will be back at work next week, but I will still try to keep the blog going, so

tune in from time-to-time for an update.

Untitled Comment

Posted by BrusselsKat on 20/9/2008 at 5:07 PM - Link

Hi Vanessa - i have been checking your blog regularly and was pleased to

see an update when I logged in this morning. Poor Will. We all feel so sad

for him to have to go through this, I cry everytime I read your blog.

Samantha's looking so grown up. Nicola is almost up to my shoulders now,



she's become a giant child, with long skinny giraffe like legs. She is the

tallest girl in her third grade class with only two boys being a bit taller.

Whenever we measure her she asks me if Samantha would be taller than

her! She's very concerned that Samantha and her cousin Sam might be

taller than her which would be wrong seeing as they are both a year

younger than her!

Anyway it's a nice sunny day in Brussels today, though cold, but the sunny

part doesn't happen often, and not often on a weekend so I need to get

out in it and get some Vitamin D before the long cold winter really sets in.

Katie

Untitled Comment


Hi Vanessa and Mark

I am still following your journey and Will's progress from afar. Hang in there -

seems like there are different challenges in this part of the journey but great

everything is still moving forward. Yeah to Sam for being a big girl and

managing all the upheaval etc. Take care

Cheryl Barson

WA

We're Back On Line...

Posted on 15/11/2008 at 10:15 PM

Saturday 15 November

Hi everyone. We've really dropped the ball as far as keeping the Blog up to

date. I thought I'd better just give a quick up date on the current situation,

then one day I'll go back and fill in the blanks!

Tomorrow we are heading up to Sydney (again). Willie will have eye

surgery on Monday. The current status of his eyes is this:

• His left eye is probably permanently damaged, but the extent of this

is still an unknown;

• His right eye should be OK, with normal vision retained, though

chronic dry-eye may be a life-long problem;

• He still has an active ulcer on his left cornea;

• He has scarring to both eyelids (inside);

• He is probably experiencing "stem cell failure" in his left eye.

So, off to Sydney. On Monday, the specialist will be grafting amniotic

membrane to William's left eye ball. The ocular plastic surgeon will also be

taking a look and if the inflammation has settled down, he may operate on

Will's eyelids to address the scarring.



Eyes

Posted on 18/11/2008 at 9:03 AM

Tuesday, 18 November 2008

Well, Willie had his eye surgery yesterday. He was, as usual, completelytraumatised by the whole ghastly experience!

We started the day off with a play at Ronal Macdonald House (I hope

everyone bought their Big Macs on Sunday!!!) and then a short trip to the

Starlight Room. I say "short" because Willie became very upset when we

had to leave after only half an hour to go and book in at ambulatory care.

This was just the beginning... Then we had to weigh and measure, take

pressure, get bands on, talk to lots of people about what was happening...

You know, all the stuff Will loves!

We did manage to go back to the Starlight Room after checking in, so this

made him a bit happier. He had a dance on the stage, which was

broadcast on the hospital Starlight channel - very cool. He also taught

Captain Starlight a few of his Ninja moves. Captain Starlight was a

surprisingly quick learner too.

Will was well and truly drugged before being taken to theatre. Not one,

but two hefty pre-meds. Seemed to do the trick though. They did the graft

on his left eye. Two layers. One over the cornea, the other over the first

graft to protect it. He also had surgery to both of his lower eye lids to

address the scarring and to (hopefully) arrange his eyelashes so that they

don't irritate his corneas.

Will has a patch on his left eye and a cannula in his left hand. He is also in

a considerable amount of discomfort. They started him on a morphine

infusion in recovery, so he's pretty out of it, but still complains of pain when

he wakes. He had a pretty restless night, on and off. He insists on sleeping

on his tummy, with his face planted in his pillow. This is now his default

sleeping position anyway, but I'm not sure if it is really the best sleeping

position post eye surgery.

We had a visit from Dr Natalie this morning (you know, the basketball

playing, supermodel, paediatric registrar???). Phew, am I lucky I updated

the blog the other night, or I might have been in real trouble!!!

We are taking turns sitting with Will. I had the night shift, so I'm off to bed

now for a rest. I'll update the blog again as new information comes to light.

Hey, how about Australian Idol?!!!!!! Wes and Luke!! Wow!!!!!!

OK, so stay tuned...



Just give us plain ordinary thanks!

Posted on 19/11/2008 at 8:00 PM

Wednesday 19 November 2008

Well, we're really a bit tired of Will being so special. The latest is that thestuff going on with his eyes is rare, rare, rare... None of the specialists have

seen it in a child before, and the literature relates only to adults. I keep

telling William that we know he's special and he doesn't have to prove it

any longer, but it doesn't seem to be working!

So, today we had visits from the dermatology team, pain team,

immunology team, eye registrar, a Pirate, Snow-White, the Tooth Fairy,

Batman, a Storm Trooper, Mrs Santa Claus, a few pets as therapy dogs....

We also did a couple of laps around the ward, and had a skin swab taken.

A busy day! Just like old-home week!

The steroids seem to be making Will a bit agro, which is completely out of

character for him, so that is a challenge. The team of specialists are all

talking to each other and deciding what is to be done. That's good, but it

also means Will is INTERESTING and I don't think interesting is something you

ever want to be when you're in a hospital... The consensus was that they

would give William a very large dose of steroids (Prednazone) to begin with,

and then keep him on steroids for a few weeks, while introducing an

immunosuppressive. This is to address the continued auto-immune

response in an effort to save some of the sight in his left eye.

William seems to be in less pain, with the morphine infusion being slightly

lowered today, though he still has a sore eye - the left one in particular (the

eye with the grafts).

His tongue has been the cause for some discussion. The dermatologists

seem to think that the tongue is nothing to be concerned about, but have

taken a swab anyway to check for any nasties. The immunosuppressant

can't commence until the bloods and the swab come back, as they need

to make sure there is nothing else going on, as well as establish a baseline

on enzyme levels, among other things.

Willie will require regular tests while on the immunosuppressant, as the main

side effects are suppression of the bone marrow, and damage to the

liver. The test will alert the doctors to any adverse side effects very early, so

that appropriate action can be taken.

We don't know how long he will need to be on these, but it could be 12

months or more. The main thing is to stop the auto-immune process to give

his eye a chance to heal.



Samantha's been going to school today and yesterday. She's loving it!

Between the Starlight room, Hospital School, play room and play therapist,

and Ronald Macdonald House, she's in 7 year old heaven!!!!

So, on we go. One day at a time. We expect to be here until Friday at

least... I'll keep you informed of any developments.

Back home.... again!

Posted on 25/11/2008 at 9:15 PM

Tuesday 25 November

We are constantly amazed at how many people still read the blog - it's

extraordinary!

We spent much of Friday in the hospital, WAITING to be discharged, while

the task of coordinating information, drugs, letters and so on, was

undertaken. The poor registrars. Honestly, they are the hardest working

people I've ever met. I'm pretty sure they don't sleep.

Anyway, we finally got the green light to go, after pharmacy had

dispensed all the hospital-only medications and the results of the tongue

swab came back. Good news is that the results were negative, so it seems

poor Will has common old mouth ulcers, probably related to stress. I might

add though, they are extremely painful and all over his poor little tongue,

which is worse for wear due to scarring as well as these horrible sores.

There's nothing more to be done either. He's on a systemic steroid, so

topical steroids aren't going to help. Anyway, the pathology results gave us

the green light to start the immunosuppressant on Saturday.

We made it home on Friday evening and Will seemed to feel much more

comfortable in his home environment, almost immediately. By this stage

however, we were all totally exhausted! It's really weird. You go on for a

while and can be really resilient and deal with anything, but every so

often, you just fall in a heap. Well, Friday was one of those days. It didn't

help that over the course of the week, Mark and I had both become really

sick. Some days we just feel broken.

The weekend was good. It was lovely to be home, not sleeping in a chair

and being kept awake by beeping machines, among other things. We just

decided to do nothing! It was lovely.

Over the past week, William's auditory skills have taken off - they were good

before, but they're amazing now. He has also developed a number of

other skills, such as jumping on the trampoline with his eyes closed, a feat

Mark tried himself and found to be very difficult! Yay Willie. (I was going to

insert a picture, but they are too dark. Unfortunately I haven't been able totake a decent picture for ages, due to not being able to use the flash on



reduced. This is a good indication that the drugs are working! As well

as that, the amniotic membrane had dissolved and Stephanie

removed the bandage contact lens inserted at the last visit, which was

bunched up in Willie's eyelid. She also removed a couple of rogue eye

lashes, and scraped some keratinous (?) tissue from the lid margins.

Overall though, the reduction in inflammation is outstanding news,

meaning that the topical steroids can be reduced and that the

immunosuppressant is beginning to take effect. This is moving along

the road to a more comfortable eye for Will. The vision in his left eye is

another story all together, but one for another day...

We will be back up to Sydney in 4 - 6 weeks for another review.

Willie has not been opening his eyes at all since the surgery a month

ago. However, just yesterday he has started confessing to "peeking"from time to time. He also has a stick now, so he can get around fairly

independently, with or without peeking. Anyway, it's encouraging to

hear that he's at least trying to open his eyes sometimes.

That's a bit of a rushed and garbled update, but I hope it makes sense

and gives a bit of useful information.

Once again, we want to thank everyone that has assisted us

throughout this very difficult year. We really value your support and

we will never forget it. We must confess though, we are going to be

very relieved to farewell 2008 and welcome in 2009. I hope 2009 turnsout to be a great year for everyone!

Have a wonderful Christmas!!!!

Happy New YearPosted on 17/1/2009 at 6:38 PM

Saturday 17th January 2009

Well, I'm pleased to report that Will has been using his eyes for a whole

week now! He started of Friday 9th, the day after his birthday! We're notquite sure what made the difference, but whatever it was, Will has decided

to start using his eyes again and it is the best news ever! We are so

relieved, as we were beginning to think that he was never going to open

his eyes again! His eyes have been a little bit sore over the past couple of

days, but it's progress none-the-less.

We are all having a lovely holiday, just relaxing at home.

Willie has been sleeping in his own bed consistently for a week or so. Mark

built him a TMNT Cowabunga Bus bed for his birthday - it's very cool! I think

everyone knows, Will is a major TMNT fan! We had a Teenage Mutant NinjaTurtle birthday party last week. It was lots of fun.



Mark will be able to work downstairs (and make some money!) without

being too far removed. This will alleviate the anxiety all around, as well as

make the situation somewhat safer.

So, that's all for now. We're looking forward to a wonderful 2009!!! We wish

you all a great 2009 as well.

New chapter


8 February 2009

Well, it's been an interesting month. William has gone from strength to

strength.

On 26 January the local lawn bowls club hosted a charity day to raise

money for Will. First of all, I've got to tell you, lawn bowls is HEAPS OF FUN!!!

I'd like to do some more and will try to make it for lessons when the weather

cools down a little. The lawn bowls club is called the "friendly club" and

nothing could be truer. We had a great day. William lasted until after

lunch time, long enough to hear Mummy give her little talk. The day

included music from a wonderful band (thanks Ange, Dan, Aaron, Phil),

and an auction, as well as the bowls. All in all, it was a great day and the

club raised a tidy sum of money to help Will.

We had a trip to Sydney for an eye review on 2 February. Stephanie was

happy with Will's eyes in that the right eye had not deteriorated at all

(yay!). The left eye has finally healed over. There is a small granuloma, but

she didn't touch it on this occasion as she just wants Will's eyes to settle

down.

Unfortunately, Will's left eye has had stem cell failure. The eye has healed,

but with the wrong sort of tissue, so he can't see out of his left eye. There

will be options to consider in the future, but they won't attempt anything

until we can be sure that the autoimmune process has run its course. The

good news is that Stephanie doesn't want to see us for 2 whole months!!!!

The 2nd of Feb was to be William's first day at big school, however we were

in Sydney, Samantha missed her first day on the 3rd as well, as we

didn't get home until that afternoon. Mark had taken William up to the

school on the previous Friday to meet the teacher, find out where he would

be sitting, and so on. This went pretty well, though William was unable to

cope with the lights - a bit of a problem, as we can't expect the whole of

kindergarten to live in the dark, just for William......or can we???

Anyway, Wednesday 4 February was both Samantha's and William's first

day. Here are some photos of this momentous occasion:



Check out those muscles!!!

You'll notice that William is wearing

his mask. We thought that this would

be the go for school, but much toour delight, he managed really well.

He even had his glasses off at times.

The first two days William managed

to stay until lunch time. On Friday,

he managed to stay ALL DAY!!! His

eyes were pretty sore on Friday

night, but William is so happy. He

loves school. We couldn't be

happier. He's even managed toplay outside during recess and

lunch, as long as he is wearing his

glasses and hat.

We've had a couple of melt-downs,

but nothing like we could have

expected. William loves his teacher

and says she is very funny. His

itinerant teacher is working with him

in the mornings. Will is having troubleseeing the board when seated on

the floor, but seems to be able to

when at his desk - we know he has

trouble looking up. Aside from that, I

think he's doing OK.

The constant tearing is a bit of a

problem - just gets in the way really -

but he's managing.

Mark has to go up to the school at

least once each day to give William

his eye drops. This is a bit disruptive

for Will, but nothing we can't live

with.



Samantha is also very happy. She's been keeping an eye on William, which

is wonderful. She is in a 1/2 class with her friends and her teacher is lovely.

She's so grown up!

So that's it really. Another update soon...

Untitled Comment


Sorry I haven't commented earlier, but I have been in a rural area helping

underprivileged kids by teaching them modelling, high jump and

basketball!

Thank you for your blog and for keeping me updated.

Hope you are all ok and we will def have to catch up next time you are inSydney!

Love Natalie



April Update

Posted on 25/4/2009 at 1:06 PM - Post Comment Saturday 25 April 2009

I am still amazed when people tell me they have been following the blog!

Each time, it renews my resolve to keep it going, so here is an update!

There are even a few new-comers!!!

The kids have made it through term one without too many disasters.

William was in the wars a bit towards the end of March. He had a spill in

the playground, giving his shin a hefty wollop. When he returned to the

playground after having some first aid in the front office, he proceeded to

be on the receiving end of a soccerball in the nose!!! After a blood nose,

he recovered OK.

We kept him home the following day, but when he returned to school on

Thursday, he had another spill, this time injuring his arm! They say these

things come in threes, so we hope that's all for now. Just shows how difficult

it is for William to be outside... Will's had a couple of visits from Kelly, from

Guidedogs. Hopefully she will be able to help William avoid further spills in

the playground.

Both Samantha and William have won an award at assembly this term.

William in particular is very proud of his award for showing confidence in

the playground and for making new friends. They also had cross country, in

which they both came towards the back of their class (I think secondlast?) but it's a long way and they both gave it their best shot which is

wonderful.

We started Korean Martial Arts this year, as a family. Mark has decided that

it's not for him, but Samantha, William and I are continuing. It's great for

William because it's a small group and we're indoors. For Samantha, I think

she is beginning to feel more confident, and that's a great thing. For me,

the aspects of physical fitness as well as self defence are great!

Recently, I was doing a bit of surfing on the Internet to try and find out whatWilliam's vision would be like, to help me understand a little better. I found

a website with a really useful example. Here is a picture of a car. When

William looks at the car with his right eye, he can see it. I asked him what

the picture looked like with his left eye and looking again with his right eye,

he chose the second picture as the closest to what he saw with his left

eye. It was quite an interesting exercise.



Right Eye Left Eye

We are back to Sydney tomorrow for Will's appointment on 27 April for

an EUA. Will is using his eyes really well, so we are hoping for some good

news. We also have a vision assessment booked with Vision Australia on 1

May, as we still haven't managed to get an accurate assessment of what

Will can actually see. Hopefully he'll be up to it after our Sydney trip.

We now have a staircase inside our front door, courtesy of the Belconnen

Lawn Bowls Club. It's absolutely fantastic! It allows William to come and go

from the house much more easily, as well as allowing Mark to get on with

working downstairs without having to worry about being too far removed

from the kids. We've had the most wonderful assistance - thanks so much

Geoff!

I discovered a system called "Tranquileyes" which is a set of goggles that

you can use to apply heat, cold, moisture, or just to provide darkness. Will is

calling them his 'boobies' because that's what they look like - I'm not so sureabout that - but he's wearing them at night time and when his eyes need a

rest. Hopefully we'll start to see recovery time getting shorter as a result.

One thing is certain, he is sleeping really well. Not sure if that's to do with

the total darkness, being able to keep his eyes closed more easily, or just

feeling more comfortable - or none of that... It's good, whatever the

reason. Here's a picture:

Happy (belated) Easter to everyone who continues to follow Will's progress

via the Blog. I'll provide another update after our Sydney trip - hopefully it

will be all good news.



The most exciting news of all this time is that William officially weighs

21.4kgs. Our last visit, on 2nd February, he weighed only 18.6kgs, so he's

gained nearly 3kgs and is back up to the weight he was before he

became sick last June. It's onwards and upwards now. We've turned a big

corner...

As for the business of the day, after fasting from 7:30, William didn't get to

theatre until after 4pm!!! Poor little bloke. We had our regular round of

visitors, except we didn't see anyone from dermatology this time. That's a

first.

Doctor Stephanie was happy with Will's eyes. She said the left eye (the one

he can't see out of) looks the best she's ever seen. The right one hasn't

changed, however she will be interested (as we all will) to see how he goes

with his vision assessment this Friday. We will hopefully find out if the scarring

on his right eye is impinging on his vision at all.

The next EUA is in 3 months, however we're going to try and get William

used to the eye clinic in between. We have to get him over his fear

response some time, as he will have a lifetime of eye examinations and he

can't keep having a general anaesthetic each time!!!

Yesterday's anaesthetic was eventful. The anaesthetist came and spoke to

us in the waiting room to let us know that he thought William might have

aspirated sometime during the procedure. It's hard to tell because

William's base line is a rattly sounding chest / throat due to the constantsecretions. Given that the consequences of aspiration can be very nasty, it

was decided that William would stay in overnight to be monitored.

Here he is in recovery. He was still

pretty out of it when this photo was

taken.

As it turned out, he was absolutely fine. We didn't get out of recovery until

after 7pm though. And as he'd had a nap in ambulatory care in the

afternoon William didn't get to sleep again until after midnight!!! Between

the awake boy, the beeping machines, the family with the television on

until who-knows-what-time, the crying babies and the not particularly



comfortable chair I had to sleep in, I was feeling a little weary the next day,

to say the least.

William was given a special bear on this visit, courtesy of Julie in Ambulatory

Care. It's a Manchester United bear, called "Furry". You'll see Furry in the

picture of Will in Recovery (above). Furry and Floppy Dog got their owntags too, just like Will!

We all sat up on the ward to

watch the final of the Biggest

Loser, because William is a big

fan. Samantha decided to

have a lie down in Will's bed.

These two are the best of

friends...

William was very funny when it came to take the cannula out this afternoon

so we could come home. He was OK with it until the bandage came off

and he actually saw it!!! I think that must be the first time his eyes have

been working at that crucial time. He freaked out completely! If it hadn't

been so distressing for him, it would have been hilarious.

I took a couple of photos this time. William had asked me to take a photo

of the theatre so he could see what it looked like, but I thought that might

be a bit weird... maybe next time. I did take a few photos throughout the

day though - just one hospital setting after another.

Thursday 30 April 2009

We managed to get Will into the Outpatient paediatric clinic at Canberra

Hospital. We felt it was important to follow up after the events on Monday,

just to be on the safe side. Mark took Will to see the Registrar, but

managed to get to have a chat to Dr Jenkins, which was a real bonus.

There are some frustrations about the communication between the Kid's

Hospital and our local care team, so hopefully we will be able to get these

straightened out. I'm trying to keep a full record, as far as possible, so that

helps a bit, but we still need Will's doctors to be talking to each other.

Hopefully, the consultant from immunology at SCH will be speaking with

Stephanie about Will's eyes and immune response. With a bit of luck, the

next round of intervention may happen towards the end of the year,though we don't know what this may involve. It will also depend on the



status of Will's immune system and the disease process. Whatever it is, it will

be a difficult time for Will as it will involve surgical procedures, but we will

worry about that when the time comes.

I will be phoning Dr Stephanie on Monday to have more of a chat, as we

only got to speak briefly after the last EUA, so I will be asking a few morequestions then and hopefully will know more for the next Blog entry.

FRIDAY 1 May 2009

William had a vision assessment at Vision Australia. He did really well. He

has some significant difficulties due mostly to the tears and the light, but

under ideal circumstances (short period, dim lights, high contrast, and

illuminated target) his vision in his right eye is perfect! Unfortunately, these

conditions are hard to come by. The assessment will point to some good

strategies for other situations.

William also has a new pair of glasses to try. They are the darkest available

and specifically designed for people with photophobia. They look a bit

obvious, but he seems to manage in the sunlight a bit better when he

wears them, which is really great.

That's it for now. Stay tuned.

Sent: Tuesday, May 05, 2009 9:49 PMTo: M & V Sutton

Subject: Thanks for updating the Blog

Hello Vanessa and Mark,

I just read the blog (yes, I'm still a faithful blog reader too) and I am thrilled

that things are improving. While I see both Samantha and Will often, its so

lovely to be able to keep up with where Will is at. I think I became very

attached to you all and to the outcome! So please, keep updating it

when you can if you don't mind people knowing the information. I knowthere are many people who were and are really rallying for you all and

who care to follow Will's (and Samantha's) progress.

Keren

It's time...

Monday 21 June 2010

The last time I attempted to write an entry for the Blog was after our visit to

Sydney on 31 August 2009. It's now nearly 10 months later, and the longer I



that was the case, then they perhaps did not have the right vehicle, as ours

has a mobility parking permit permanently affixed to the front windscreen,

Anyway, to cut a long story short, we turned around and headed back to

Centennial Park. To his credit, the Ranger who had issued the infringement

notice was very apologetic. He photocopied the pass and cancelled the

infringement. It took a couple of hours out of our day (and possibly severalyears off Mark's life) but was all sorted out, thank goodness.

So, we headed off to Jennine's to catch up, which is always nice.

Unfortunately, the big kids Ben and Lara were not there, but it was nice to

see Jennine and Mitchell.

Sunday, we were planning to visit Luna Park, but decided to stay at Ronald

Macdonald House, as Saturday had been a very big day. The kids ended

up having a great day as they made some new friends (Brooklyn and

Kaitlyn) and they all played hard!!

OK, so today, Will had to fast from 6:30am, so Mark got up early and

cooked him fried eggs (his favourite) for breakfast. We had to wake Will up

to eat, but I think he was in eating heaven! Then back to sleep for a little

while.

10:30am we reported to Ambi Care and saw lots of familiar faces. The play

therapist Irene had a student, Johnathon, and I think Samantha and

William might have given him a run for his money! Will weighed in at a

massive 25.2kgs today, and is 122.5cm tall. He's growing heaps. I wasunder strict instructions from Will to negotiate with the Anaesthetist for a

story when he got into theatre, as he hates it when the gas mask is pushed

onto his face while we all try and hold him down. He prefers it to go slowly.

As luck would have it, today our Anaesthetist was the self-professed 'Master

of Storytelling'. We've now decided to give each Anaesthetist a rating out

of 10 for their story telling ability!! Unfortunately, Will says he didn't even

hear the story. I'm pretty sure he did, because he was going along with it

(blowing away the smelly green aliens for example). The more likely

scenario is that the Midazolam actually worked and he was too out-of-it to

know what was going on, not to mention the likelihood that the amnesicqualities were actually doing their thing! He didn't have the Ketamine

today and I think this was probably good, but it's always hard to tell, given

the different variables on any visit. Unfortunately, despite all of this, he

woke up ANGRY!! I think that he was actually trying to fight with the mask,

but wasn't able to muster up the oomph to do it! He settled down

eventually and made a good recovery.

The feedback from the doctors was good. We didn't get to talk to

Stephanie today, but news was that Will's eyes look good. They are less

inflamed every time she sees them. There is a small 'sac' on his left eye (thebad eye) which I guess she will just keep an eye on. The right eye looks OK,



Eyes:

- Will’s left and right eye are both healthy and have corneas intact.

- The left eye has had complete limbal stem cell failure which has resulted

in vascular tissue growing over the whole surface of his eye, meaning he

cannot see letters out of this eye. He would still be able to see light and

possibly movement

- The right eye has had partial stem cell failure, to approximately the top

1/3 of the cornea. This has led to vascular tissue encroaching on the

surface of Will’s eye, over the top third of the cornea.

- To date, the tissue has progressed very slowly and has not impinged on

Will’s vision, however it is continuing to progress and may grow over his

pupil in the future.

- If the growth continues to advance, then surgery will be required to pull

the tissue back. This will involve a surgical procedure to remove the

tissue. An amniotic graft would be placed over the eye to assisthealing.

- We would be hoping that the existing, healthy stem cells were able to

divide to replenish the damaged area at the top of the eye. If not, the

abnormal tissue may recur, meaning this procedure may have to be

repeated periodically.

- There is no plan to intervene with the left eye at this time. If we were to

intervene, an implant of stem cells would be required and Will would

have to remain on long term immunosuppression, which is not good for

his overall health. However, if the right eye does regress, or it sustains

further damage, the left eye could still be operated on to restore somefunctional vision. The left eye has been described as a “spare tyre” to

reflect this potential outcome. I am open to considering therapy for the

left eye but it would be a major undertaking that would have

implications for Wills health and development. As it would cause further

discomfort, require frequent visits and EUAs and necessitate long-term

immunosuppression. Further due to the lid scarring it is likely that stem

cell transplantation to this eye would not be successful long-term.

- If the tissue on Will’s right eye remains stable and does not progress, then

there will not be any need to intervene at this time.

- The current plan is to return to the eye clinic in six weeks. We will monitor Will’s vision in the meantime, as this is the main indicator for progression

of the abnormal tissue growth.

- Following our next visit to the clinic, if warranted, Stephanie will order the

amniotic tissue and we will plan to do the procedure in 2 – 3 months.

That will be approximately October – November.

- Will may have to remain in hospital for approximately 1 week. There is

no definitive timeframe for when he will open his eyes, or when he will

be able to see – this is dependent on how long the graft remains in situ.

- The procedure will be painful. But can be managed with analgesia

under the supervision of the paediatric pain team whilst in hospital



August 2009, the Falcon made an almighty BANG outside Ronald

MacDonald House, frightening the life out of us and the people sitting in

the dining room trying to enjoy a relaxing breakfast!!! My first instinct was to

look up, as it sounded like an anchor had landed on the car. We had to

stay an extra night in Sydney, waiting for NRMA, for parts, for mechanics...This was the first (and only) time I've ever come up to Sydney with the kids,

without Mark. That was really the final straw – it was time to buy a car! We

found a great deal eventually and bought a 2005 Nissan Murano from a

guy in Melbourne. Mark flew down to pick it up. It is lovely! It's the nearest

thing to luxury we're ever going to experience. Leather upholstery, heated

seats... I love it.

We've had a few trips to the eye clinic, still with very little benefit, but still

about familiarisation as much as anything. We've also been up for

examinations under anaesthetic, the most recent being today...

And there you go – that wasn't so difficult, I guess we're up to date now!

So here we go... we came up early so that we could have some fun, still

aimed at making the trip to Sydney less about the hospital and more about

having a nice time together. We went to the wood show on Saturday at

the Entertainment Quarter, near Centennial Park. We parked in an

accessible car park, as Will still struggles with walking long distances as well

as moving around in the sun. In fact, we parked right alongside Pop's car!

Pop, Scott and Ian had made the trip up from Canberra to go to the woodshow that morning.

The show was good. Mark enjoyed checking out all the power tools and

gadgets. We found an interesting stall with Indigenous art work and

managed to while away a bit of time there whilst we decided which

beautiful objects we liked the best. I had to talk William out of the

boomerang (William with a boomerang? I don't think so...) and managed

to talk him into a dream rock instead. Samantha chose a lovely little

necklace with the message of “harmony” relating to balance between

people and the environment.

So, all was good until we went to get back in the car, only to find a traffic

infringement notice on the windscreen!!!!!!!! Mark was a little annoyed

(understatement of the century). He had a long and heated discussion

with the Ranger on the phone, to no avail. As we were driving out to

Concord to visit Jennine, the Ranger got back to us and indicated that the

5 photos of our vehicle did not show a mobility parking permit. I suggested

that if that was the case, then they perhaps did not have the right vehicle,

as ours has a mobility parking permit permanently affixed to the front

windscreen, Anyway, to cut a long story short, we turned around andheaded back to Centennial Park. To his credit, the Ranger who had issued



the infringement notice was very apologetic. He photocopied the pass

and cancelled the infringement. It took a couple of hours out of our day

(and possibly several years off Mark's life) but was all sorted out, thank

goodness.

So, we headed off to Jennine's to catch up, which is always nice.Unfortunately, the big kids Ben and Lara were not there, but it was nice to

see Jennine and Mitchell.

Sunday, we were planning to visit Luna Park, but decided to stay at Ronald

Macdonald House, as Saturday had been a very big day. The kids ended

up having a great day as they made some new friends (Brooklyn and

Kaitlyn) and they all played hard!!

OK, so today, Will had to fast from 6:30am, so Mark got up early and

cooked him fried eggs (his favourite) for breakfast. We had to wake Will upto eat, but I think he was in eating heaven! Then back to sleep for a little

while.

10:30am we reported to Ambi Care and saw lots of familiar faces. The play

therapist Irene had a student, Johnathon, and I think Samantha and

William might have given him a run for his money! Will weighed in at a

massive 25.2kgs today, and is 122.5cm tall. He's growing heaps. I was

under strict instructions from Will to negotiate with the Anaesthetist for a

story when he got into theatre, as he hates it when the gas mask is pushed

onto his face while we all try and hold him down. He prefers it to go slowly.As luck would have it, today our Anaesthetist was the self-professed 'Master

of Storytelling'. We've now decided to give each Anaesthetist a rating out

of 10 for their story telling ability!! Unfortunately, Will says he didn't even

hear the story. I'm pretty sure he did, because he was going along with it

(blowing away the smelly green aliens for example). The more likely

scenario is that the Midazolam actually worked and he was too out-of-it to

know what was going on, not to mention the likelihood that the amnesic

qualities were actually doing their thing! He didn't have the Ketamine

today and I think this was probably good, but it's always hard to tell, given

the different variables on any visit. Unfortunately, despite all of this, hewoke up ANGRY!! I think that he was actually trying to fight with the mask,

but wasn't able to muster up the oomph to do it! He settled down

eventually and made a good recovery.

The feedback from the doctors was good. We didn't get to talk to

Stephanie today, but news was that Will's eyes look good. They are less

inflamed every time she sees them. There is a small 'sac' on his left eye (the

bad eye) which I guess she will just keep an eye on. The right eye looks OK,

but Stephanie wants a vision test to make sure everything is OK. Apparently

the tissue growing on Will's eye can affect the physical structure of the eye,potentially distorting his vision. So, in the interests of efficiency, we have an



appointment at the eye clinic at 8am in the morning! Then we have to

wait until about 10 to pick up the very special drops from the pharmacy

and after that we'll head home.

Different this time was that we also had Will's ears sorted. We visited the ENT

in Canberra recently and he assisted us to coordinate with a Sydney ENT sothat we could have Will's ears cleaned out under anaesthetic, with the

possibility of inserting grommets if required. Turns out his ears were

impacted with wax which had probably been there for a long time (about

2 years would be my guess...). So they cleaned them out. Will's ear drums

looked thin and kind of frail I guess, so they elected to wait and see how he

goes, rather than insert grommets at this time. I think this is great news as we

already have enough to think about without adding issues around ears to

the list. We will have to have another hearing test and an ENT review in the

next 4 weeks or so, but I think it will go OK. Already we are noticing a

marked improvement in Will's hearing (no more whispering things that wedon't want him to hear!). Add ear drops to the regime for the next five

days, three times a day... but they're pretty easy!

So in a nutshell, eyes are much the same, ears are much better! Yay!! We

decided to go out for dinner to celebrate (not that we can afford it, but

hey, it's only money). So we found a little Thai restaurant at The Spot, just up

the road from RMHouse. For some reason there are about 6 Thai

restaurants in very close proximity to each other. Not sure why that is, but

whatever the reason, dinner was yummy!

Anyway, it's 8:30pm and the kids are just about asleep, the Blog is just about

updated, and now I can continue to provide regular updates.

I've been handing out my little 'cards' all over the place lately, so I'm glad

to finally have brought you (sort of) up to date.

Thanks for continuing to follow the Blog. Look out for another update soon.

The Suttons.

Sunday 8 May 2011 (Mothers’ Day)

There is no more Blog as Blognow, the host, is not operating anymore.

None-the-less I am going to keep at it with a view to one day posting all of

this on the Web. I’m also planning to make a little booklet specifically for

doctors which will include all of the photos of Will’s skin during the acute

phase, and hopefully some of his eyes, plus the medically relevant

information. In this way I can have something to show the doctors when in

hospital that is lighter. Currently I carry around a big, heavy bag and it’s

just not sustainable, and the doctors don’t really want the whole narrativeeither.



Sonic Sega All Stars racing for Wii is the other game Will would like.

While waiting, Will and Mark started writing messages to each other. We

often spend time insulting each other, just for fun, so here’s what they had

to say:

Mark – William is a bucket head.

Will – Dad is a banna head (banana head)

Mark – William has a grubby face

Will – Dad is chubi (chubby)

A few games of noughts and crosses, then I tried to get Will to write about

his visit to the eye clinic. He wouldn’t be in it, however we give a rating to

some of the features of the visit. Out of a possible 10:

Time with family – 8

Play DS – 10

Eye test – 0 2 6

Eat cookies – 10 9

Walking – 0 1 2

Car trip – 0

When asked what questions he has for the doctor... no questions!

Over the course of the morning, Will has come up with a few ideas he’d like

to put in his ideas book at school, so I’ve written them down for him. They

are:

Mosquito catching robot

Leaf rubbing

Funny words, made up words.

1:00pm Back in the eye clinic now, waiting to see Dr Watson (we think) or

someone.

Dr Wilscek was great. He wants to look at Will’s eyes asap, under

anaesthetic, so he will probably have an EUA in either 4 or 6 weeks (21/3 or

4/4). After that we’ll know more. It does seem likely that there will be someintervention. The main complication is the graft site, due to scarring and



also different types of tissue bieing deposited where they shouldn’t go, it

might not work. He is hoping the hard palatte will be OK though... So now

we wait and see.

1:50pm – still waiting for our 1:00pm appointment. RMH have been on the

phone, wanting us to clear out of our room, so Mark’s gone back to sortthat out. Will’s getting a little impatient nhow... We had a sandwich at the

Garden Coffee Shop for lunch and also bought Sega Sonic All Stars for Will

(the other game he wanted was too expensive)

I paid Bobbie for my sewing maching too while we were up the street. Very

exciting! Mark cancelled his 4:50 pm doctor’s appointment at Hawker as

we clearly will not be back in time.

2:45pm – still waiting...

3:15pm – moved over to the adult side of the eye clinic. Hopefully Dr

Watson will see us here and bump us up the list.

Finally in to see Dr Watson at 4:10pm!!! Out at around 5pm.

Will did really well. It’s the best I’ve ever seen and given how long we

waited it’s a really exceptional effort. Stephanie was happy with his effort.

We have our appointment for the EUA – 4 April... Just happens to be my

40th birthday. Never mind, hopefully it will be good news – that’s a birthday

present I’d love to receive.

Given it was quite late, we went for a run around on the beach and had

dinner at The Spot so as to miss the peak hour traffic. We left Sydney at

around 7pm and managed to make it home by around 10:30.

Prior to this visit, Dr Jenkins, Will’s paediatrician in Canberra, had written to

all the relevant doctors. This has really helped this time, with a much higher

degree of communication than usual. Even immunology are in the picture.

Thanks Paul!

We picked Manta up from school on Wednesday after camp. She had a

pretty rough time, being homesick and feeling anxious. WE could tell this

the moment we looked at her because she had obviously been biting her

lips – a habit she has when feeling worried. This was the worst I’ve ever

seen though, and I immediately felt very guilty for talking her into going on

camp. Next year we’ll listen to her wishes and not push it. She ended up

staying home for a couple of days as her lips were incredibly sore, not to

mention that she was traumatised and suffering from separation anxiety...

Bad parents!

Monday 4 April 2011



Mark and the kids have gone to the Starlight room for a quick play whilewe wait...

Dr Wilscek drew a diagram when we spoke a couple of weeks ago. I need

to scan it in and here is where is will go:

xxx

Plan is that we will go to C 1 North after the procedure, but we’ll wait andsee. There seems to be an expectation that Will would not need to stay in

hospital – may just be precautionary.

So, Naroosha (no idea how to spell it, but lovely) came by and spoke to us

regarding the procedure. She also drew this lovely arrow on Will’s

forehead. I wanted to right above the arrow – “insert brain here!”



We’re in the waiting room. I left Will at 2:30pm. It’s now 3:30.

We’re staying with Ronald MacDonald House, but we’re not in the main

house. Instead we are staying in a separate house just down the road. It’s

nice, but not as much fun for the kids. Feels a bit more ‘exposed’ because

there are not as many people around. This house is usually used for peoplewho have to be here long term. The other family, staying upstairs, is from

Leeton. They’ve been here since November 2010 with their son, Percy, who

is 6 years old and has cancer. The previous family who were living

downstairs have just left, after a very unhappy ending (9 year old with brain

tumour). Reminds us of just how lucky we are.

I spoke briefly to Dr Wilscek just before William went in. He reminded us

that he might need to take some tissue from Will’s palate or lip.

Will has IV anaesthetic, this time inside his elbow. Didn’t hurt like last time inthe hand, but unfortunately there was a little bit of a lapse in time, so Will

got a bit scared and upset... Still far better than the gas. I spoke to the

anaesthetist later in recovery and checked that he thought this approach

was acceptable, which he did.

Induction with propofol originally... bit scary.

They always shoo me out just as he goes under because I think it gets a bit

scary when he stops breathing on his own... machines beeping...

Manta has just written her Dad a long letter with a list of things she would

like to do (movies, popcorn, hang-out, sleep in the big bed...)

Later...

Here we are. Me and Will on C 1 North. It’s nearly 6pm. Will woke up in a

fair bit of pain (10/10). They gave him IV Fentanyl (eventually) and he’s

good now. He’s on IV fluids and has a bandage over his right eye. I

expect we’ll be here tomorrow night as well, but you never know how

things will go. Might be out tomorrow...

Dr Wilscek seemed happy with how it went. He didn’t need to take a graft,

so that’s a positive. I sense that the eye is quite a mess, with scaring etc,

but he seems reasonably happy. There was a ‘pocket’ on his eyelid too

which he did something with to make it more comfortable and hopefully

minimise opportunity for mucous or any kind of collection.

Dr Wilscek did say that it would look very bad, but with a bit of time it will be

fine. There are stitches all over the place apparently and they will take a

while to fall out or dissolve and may look pretty yuck, but that’s OK.



And this is a very funny dance at Tasha’s place, filmed on Mark’s iphone.

Insert iphone footage here.

The kids are complaining about being bored so they’ve started playing 20

questions. Will just guessed Samantha’s in 2 guesses! (Cat of course).

Manta took 20 guesses to guess hippopotamus.

OK, eyes. Will has been mostly pain free. The bandage has been sticking a

bit and I think he’[ll enjoy having some more lubrication when the

bandage comes off. We have to get the wheelchair back to OT

somehow. We can’t take it home to Canberra because it won’t fit in the

car. There’s no-one around the hospital, so it will be interesting... We’ll

figure something out.

Will is now playing 20 questions except the answer is an invention! And the

answer is... a robotic service machine that does all your eye stuff with a

robotic eye.

Tuesday 26 April 2011

Taking the patch off on Saturday was a bit traumatic for Will – he was

scared, understandably. Hughie (the eye reg) took a photo of it to send to

Dr Wilscek and he also sent it to us, so it provides a useful tool for explainingwhat has happened.

After the bandage came off, Will had difficulty opening his eyes. He

managed to get them open a tiny crack on Sunday evening, using both

hands to pry the lids apart – one hand on his cheek the other on his

forehead. Poor little guy. It looked very difficult. Not surprisingly. The

upper eyelid now extends past the lid margin by about 4 mm. This has

reduced as the swelling has gone down, but the result is that Will now has

to open his eyes an additional 4mm in order to be able to see.

Opening eyes/lids has been difficult for Will for some time. He hasn’t been

able to look up effectively since he got sick in 2008. We had a few

moments of sheer panic that he would not be able to operate his lids and

therefore would not be able to see ever again, however we’ve now

realised that the stitches and swelling were the main impediments and we

now feel confident of a good outcome and improved functionality of that

right eye.

On Monday and then today, it has gradually become easier for him to

open as the swelling has reduced. There is still a way to go, but his eye

seems quite comfortable.



He’s wearing his thermoeyes at night, for 2 nights now, with the heat pads.

They seem to be quite soothing, so we’ll keep that up. I ordered a few

spare parts as well as a new type of heat pad – beads. They’re

microwaveable, so should be simpler than having to reset the gels all the

time.

Will and Manta are playing Lego together. We’ve been hanging out in the

sunroom for a couple of hours now. I think that Will’s right eye may actually

be managing the sunlight (it’s overcast) a bit better –it’s too soon to tell for

certain, but I think this could be significant. It will be very exciting if that is

the case. We’re back to Sydney on Monday to see Dr Wilscek, so we’ll

hopefully have good news then.

Monday 2 May 2011

Waiting for follow-up appointment with Dr Wilscek scheduled for 10:40am.We set out from home at 6am this morning and timed it beautifully.

When we came up to Sydney for the procedure on 18 April, we had dinner

at the Mittagong RSL on the Saturday night, as Mark had a gig in Bowral

that night. Will received a letter in the mail a he was one of the winners of

the Kids Activity Book competition and he won a free kids meal. So we

hope to get there for lunch or dinner today so he can claim his prize!

Will’s eyelid seems to be going well, but look a little red and inflamed this

morning. Hopefully nothing to worry about.

Today is the first day of Term 2 (of course). Manta’s diorama of space is

due in tomorrow and not complete at this stage.

Saw Dr Wilscek and he is happy, mostly. He’s prefer Will’s eye to look

better, but he thinks there is a noticeable improvement in the surface of

Will’s eye as a consequence of the work.

We will see Dr Wilscek again in 1 – 2 months, to coincide with a visit to

Stephanie. We also need to visit the immunology outpatient clinic aboutthis time.

Dr Wilscek would like Stephanie to see Will to advise what next, so we

made an appointment for 1pm today to see Stephanie, since we’re

already here...

We got to see Stephanie at around 2:30. She’s happy with Will’s eyes. Will

did pretty well on the slit lamp, though Stephanie only ever sees the bottom

part of the eye, not the area that is scarred. Nonetheless, she is happy that

Will’s eyes feel more comfortable. We spoke about the next steps. I think

that after a month or so, when she is satisfied that there has been no

increase in inflammation or other side effects, she will talk to Dr Wilscek



about doing the same thing to Will’s left eye. Apparently Dr Wilscek

wanted to do the left eye first, however Stephanie wanted the right eye

done, with a view to maintaining vision in that eye.

We expect this year will be quite eventful in terms of Will’s eyes. We also

spoke to Stephanie about other plans in the future, which she didn‘t ruleout. She keeps her cards close to her chest.

On the way home, in the park at Mittagong.

Thursday 5 May 2011

I popped into Guidedogs office in between meetings today. Judy has

been trying to get in touch with us, and my attempts to phone have been



futile, so I figured I’d just pop in. The receptionist phoned Judy on her

mobile and we arranged for her to call in this afternoon with Will’s new

cane, which she did. So now Will has a beautiful red and green cane with

a red ball which is significantly longer than his old one.

Saturday 7 and Sunday 8 May 2011

William has learnt to ride his bike without training wheels over this weekend.

He is still having trouble getting started, and stopping (his technique

involves taking a dive), but he’s going great. I had been thinking of

applying for a quality of life grant this year for a tandem bike, but not sure if

it’s necessary anymore... We’ll wait and see how he goes. All depends on

the day I expect, the level of light, etc.

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