February 12, 2008
What follows is the ordeal that Corwin went through as I originally blogged it. The entries are in reverse-chronological order, so you need to go to the bottom to start at the beginning.
This record is being kept intact as part of a memorial for Corwin, a tribute to his courage and determination, and in the hope that others can learn from our tragedy.
In the time that has passed, we have discovered that Corwin has had a large impact on the lives of hundreds of people locally. A pohutukawa tree has been planted in his honor at his Kindi, which the children water every day. Newcomers are introduced to it as "Corwin's tree". And I have overheard children in Orewa Beach Playground refer to it as "Corwin's Prayground".
This page was archived on September 29, 2007.
Thank you to the many people who have offered support over those fateful two months.
A note to the press: I Have moved the press license down here (sidebar), please read it. Thank you.
I have received a contract from New Zealand Womans Weekly for an exclusive. Interview on Thursday. The contract basically commits us to keep materials used in their story, not already under another license, exclusive to NZWW until the carrying issue finishes it's run.
I intend to hold all unreleased materials proprietary until, at least, the interview date. Any material, after that date, whose release could compromise the exclusiveness of the story will remain proprietary. This also means that I will not be commenting on anything not already released... except with regard to remaining true to the readers of this blog.
That covers the next 15 or so days I guess... I doubt there will be anything especially Corwin-related in that time anyway. Though NZWW will, thus, be first to break news of his ressurrection :)
The blog license still holds. I understand there will be articles in the Sunday Star Times and the Herald on Sunday, based on previously released material and, probably, something about the funeral (as journos from both papers were there.) If NZWW handle their story cleverly, SST and HoS will sell their mag for them.
Tributes streamed in via internet.
Huh... as I wrote this, one of Corwin's electrical toys (a truck) started up by itself and took some effort to shut it off. "brrrummmm-brumbrumbrum..."
Well... I carefully aid out my suit last night, so the cats could shed evenly by morning. Took hedge-clippers to my beard. Looked out over the coast, smelled the coffee and tried to work out what I could say without choking. Maybe I won't say anything...
People have been wanting to practise their "bits" for the funeral on me. I would rather go through the funeral only once, thank you.
I have received the following in another forum:
You have taken tragedy and used it for change in a positive way. There is no greater legacy for your son. I offer my sympathies and understanding to you and your family, as I also have a son who is autistic.
Thank you for sharing this part of your family's life with us and what you have learned.
Than you Kath, for your support.Thank you all for your messages of support. This page is now closed. Please now send all messages directly to Simon and Cathy.
There is a contact link in the sidebar. Please do not be offended if I do not reply to everyone. Put your name at the bottom and I'll try to include you in the "thanks" list. I will probably miss some people - apologies - and some people are missed out at their request. Naturally, if you don't want to be included, or you want to be removed, do speak up.
There is to be a Coroners Inquest into Corwin's death. Just got the letter today. The hope is that there will be something to be learned from all this which will help other children avoid the same fate.
A beautiful day today, and still a bit surprising that I can still see that beauty what with everything. About Orewa with Cathy I am struck by tender feelings for the children I see. The weather looks to continue fine for the funeral tomorrow.
It seems there will be a small press contingent at the funeral. They are coming as members of the public and have agreed; no photographs and no interviews. As long as they remain as the public, I cannot see any reason to exclude them. (They didn't have to tell me thay were coming, and could have hidden their presence.) The same goes for any spiritual mediums, evangelicals and such like: remember you are guests.
There will be a point where procedings will be family and freinds of the family only. Please don't be offended if you are asked to leave.
I am a little nervous about the press part - it's like a celebrety funeral almost. However - I guess Corwin won't be much bothered by paparazzi.
We've just dropped off clothes and music as well as files for the presentation. Everything should be set now, though we expect to be out and about tomorrow with last minute things. Tonight will be a quiet evening in, looking out over the sea, and watching Battlestar Galactica (SFC remake.)
Some people have asked where to send flowers. Net-savvy readers will understand our reluctance to put our physical address on the internet. PO BOX [removed 2008], Whangaparaoa should be fine, it is intended for hard (non-electronic) mail. If you are reluctant to send flowers there, I am sure courier to: "[removed 2008]" will work. At least it'll keep them on their toes. Good timing would be 1:30-2:00pm on the 27th.
[added 2008] Adresses are no longer current, so have been removed.
We'll follow with set speeches and an open mike. There will be a period for people who want to, to pay their final respects.
The Herald Obituary went out today, the Rodney Times will have a story tomorrow. I've had interest from Sunday Star Times and (again) NZ Woman's Weekly. I'll let you know how it turns out.
Organising the funeral is quite simple. Mostly the running around is to make sure everyone is on the same page.
Bridge, Corwin Samuel. On September 21, 2007 peacefully at Middlemore Hospital as the result of a tragic accident; aged 4 years. Dearly loved son of Simon and Catherine. Dearly loved grandson of Carol Martin and Richard Bridge. Will always be remembered. A service for Corwin will be held at the Chapel of Faithful Funeral Services, 35 Red Beach Rd, Hibiscus Coast, on Thursday September 27, at 2pm, followed by a private cremation. Special thanks to the staff at the Middlemore Hospital ICU for their wonderful care. All communications to PO Box 305, Whangaparaoa.
I spent yesterday evening at Middlemore. Corwin was lying in state in the Adult Short-Stay Unit's Bereavement Room. He's had a remarkable number of visitors, as he was well loved by everyone who came in contact with him. I spent time with everyone too, as well as stealing some time alone with him.
He's gone yellow and cold, like a doll, but his expression is serene. He was under his favorite old blanket and surrounded by toys, balloons and tokens. This is a memorial site for the living to gather - Corwin is definately not here.
Cathy says that some souls only visit for a little while, fulfill their purpose, and leave. Corwin was certainly keen to get here, and got the absolute most out of every waking moment.
There is an emmense release from no longer needing to be brave for Corwin. People have said I'm courageous - it's all an act, sorry. I'm a total coward and I so did not want to go look at my dead son. It's hard to describe: imagine if you... no... don't imagine... don't even try, if you don't know, I would not wish this on you, not for a second.
My father drove up from Wellington to pay his respects. Then it was off to bed (about 8-ish). I took a pill and the world went away 'till morning.
This morning was all about organisation. Trying to sort out a funeral director this afternoon to start Monday. The service itself is expected to be on Thursday (27th), then everyone will have an excuse to take the day off on Friday. (Thank me later...)
Anyone who wants to come is welcome - special invites are going to particular people as well.
Corwin has been a donor recipient, so the prospect of donating was considered. Corwin died of septicemia... making his organs too septic to be harvested. I have spoken about donating organs before. Even if they were harvested, we could still have had an open casket funeral because the way they are removed does nothing untoward to the outward appearance of the corpse.
Corwin's body will be cremated and the ashes scattered in the sea - at one of his favorite spots.
The major toys are not ready to be taken down yet. We feel the gifts received at ICU should stay with Middlemore. Some to children in the ICU at the time and the balance to Kidz First. Toys that have been in contact with Corwin are an infection risk and will be properly sanitised first. The toys at home, we'll find worthy causes for. This year would have seen Corwin on Waiheke Island for the annual Teddybear's Picnic (children bring a toy to donate or exchange) so that is a likely recipient.
We had brunch at Sylvia Park foodcourt. Pancakes, bacon and banana with fake maple syrup, banana smoothie. We found a quiet place to eat just outside by a decent playground. It was a good, non-frazzling place. Must remember, next time, to bring Corwi...
Yesterday saw a wide-awake and active day for Corwin. He's been drifting in-and-out, roughly hourly, most of the week but he seems to have chosen Friday as his big day. So, he had lots of treats, lots of long cuddles, and another trip to the gardens. He's also been playing with everything: piano, straws, cuddly animals, the works. Overall, a hugely enjoyable day.
I missed it :( I had popped home Thursday night for maintenance and spent Friday with a huge migrane. Even if I'd made it, I'd have been useless for anything.... oh well.
At 8.50pm last night, Corwin gave a few hitched breaths in his sleep, and died peacefully.
|
We've managed to keep our last promises...
He's had marshmallows - just one, didn't want any more. But he contiues his intake of ice-cream and ice-blocks. He can have as much as he wants, we tell him, because he's been so good and so brave.
He's got his sipper bottle - an old freind, he always felt better knowing where his water is (people with small children know about this). He would take great big drinks of water, but lotely he has been having trouble swallowing and only manages little sips.
He's bitten through his bite-block!
He's had long cuddles with Mummy and Daddy. This is clearly enjoyed and he looks happier for it. I had him on my lap today and rocked him to sleep... when I asked the nurse about a cuddle, he clearly tried to reach out for it. So we did it right away instead of waiting.
He's had excursions outside into the hospital gardens. The hospital has a special trolly, and garden, for just this purpose.
He enjoys the sky, the trees, and the flowers. (Pictures on the way.) The play-therapist has made a giant paper tree for his room. Cathy and I swung by the Zoo for a big poster of a baby elephant (favorite animal), now stuck to the ceiling. It looks more like a kids bedroom now.
There has been some discussion about a possible train ride and a visit to a beach. It depends on how well Corwin is and how long the support staff can be spared. A train ride is more likely as the station is right outside and it need only go to the next stop and back. Beach is less likely, requires a van (doable) and the time (tricky). And I havn't promised him.
Since Corwin can have anything he wants, there was a (warmly greeted) suggestion that he may like to watch the Rugby World Cup. Such sessions were likely to be well attended, but, sadly, there is not enough room. Maybe "Bob the Builder", if he's up to it.
Nurses going off-shift (for their few-days a week off after their gruelling 12-hour shifts) have been visiting to say goodbye - tears all round. This is in case he is not around when they return. Nurses on their breaks have been known to ring to see how he is doing.
The doctors tell us that Corwin's tests show he has taken a turn for the worst after holding steady for a couple of days.
Corwin has had his medication reduced (3ml/hr) so he can sit up and interact more. He had an ice-block yesturday, a lond drink of water today, and some ice-cream.
While he was enjoying his treats, we recalled the time Corwin got nto the freezer at home. He fished out a litre box of ice-cream, opened it, got the ice-cream out in one big lump... carried it to the table and tucked it. Things had gone quiet so I investigated... Corwin was covered in ice-cream but no mess I could see: just an empty box on the kitchen floor.
First priority was the bath... after that, I found half the ice-cream still in a (runny) lump on the table.
Medical advice is that he can have as much as he wants of whatever he wants.
His vitals remain strong, but albumin is low causing his scrotum to swell up like a balloon. Dressings are being changed in ICU, but less frequently. The bandages have been bound differently, giving his arms and legs more freedom of movement, though he resists moving them as yet. Cathy was able to cuddle Corwin yesturday, and he went to sleep on her lap.
Kath has made a range of balloon animals for Corwin, he was quite puzzled to find them all over him when he woke up and was most interested in a balloon dog (it's red).
Tomorrow should see some painting - Corwin has been too weak to hold anything so we'll probably be doing it under his supervision. As he gets used to being able to move more, he'll play more actively.
It seems I can face all this right now by not thinking about the longer term.
Cathy and I are home tonight. We'll be back at Middlemore tomorrow night, and I have work on Tuesday and Wednesday, so expect a delay for the next post if I can't sneak computer time while I'm there.
The skin culture is invisible, but the bactigras mesh over the area provides an indicator of progress. About 60% is "sticking". Of the remaining, IIRC 30% of the artificial skin is sticking... but there is a huge serface infection. The more superficial burns around his face are healing "somewhat".
On balnce, it has been decided to change the emphasis of his care. The focus now is on keeping him "clean and comfortable" (a phrase we have always used during nappy changes). He'll get higher doses of painkillers, get extubated, and be allowed to wake up for a bit. His dressings will be lighter and more flexable.
Everybody has been coming in to give him hugs.
We plan a day or two of activities. He'll have his promised marshmallows. He will have water from his sipper bottle. If he can sit up, perhaps paint, play his piano... maybe even have a swing if he is up to it. Sing him good-night, then we'll knock him out for the duration.
Come the next crisis, they will not resuscitate.
Monday, he had to be treated for a fungous infection, but that stayed clear for Tuesday's session. His regular infection has stayed steady - it responds to the antibiotic but Corwin seems unable to get rid of it.
About 2/3rds of the skin culture seems to be working, but there is no way to tell if this is going to pay off. Ruoghly 2/3 of the artificial skin on the rest of him is doing OK. ICU says his overall condition continues to get worse. What we need is another clear run like a couple of weeks ago.
Last night he was very wakeful and active, waving his arms and legs about, despite increased sedation. Gran thinks he was trying to get out of bed. In theatre, his blood-pressure dropped and he received blood, extra fluids, and noradrenaline. He stabilized quickly after theatre though.
He still has that bacteria infection from way back, responding to antibiotics but not actually going away. It has been explained to me that the sulfamyalon irregation is only needed when a silver nitrate dressing is being used. It ain't, so the irregation has been stopped. (I'm used to silver nitrate being a nasty poison...)
Though he spent the day on five times his normal sedation, he still managed to surface long enough for a hello and a good chew. Some music, and away he goes again.
Cathy is having a break tonight. It's hard for her to be away from Corwin for any length of time but she needs sleep and time away too.
I'll be home tonight and heading back in the morning. Cathy and Gran are at Middlemore.
I'm back at work on the 11th, and Software Freedom Day is on the 15th. So I'll have plenty to distract myself. I've been fiddling the website some more: IE users will find the white borders around the images reappearing. The mp3 player is history: it took up too much space and not all browsers (IE) could see the right playlist. A shame because it made a nice slideshow.
Nurses have taken to picking him up bodily (instead of rolling him) to change his bedclothes. It's more efficient, gentler, and gives them an opportunity to give him a gentle cuddle. He'll be missing his cuddles, but we daren't disturb his dressings.
The operation on Wednesday went well; more skin was harvested from his scalp and any other place possible (without spoiling his good looks) as containment for the skin culture that was sprayed onto his chest and abdomen. An arm was considered, but needed cleaning in patches and there wasn't enough skin to harvest to stabilise the culture anyway.
We'll know in a week if this works. If it does, not only will it improve his survival odds substantially, it will bode well for the treatment to the rest of him. Cross everything, touch wood, be nice to cats, and whatever else anyone can think of. All goes well, the next treatment is on the 17th. Corwin is booked into theatre every day for the next month.
The irregation tubes have been removed and sulfamyalon is being applied in theatre. Partly to avoid washing the culture away and partly due to an allergic reaction that was observed on Tuesday. As Corwin is in theatre every day, such intense irregation may not be needed... I am personally quite nervous about this.
Corwin seems to have latched onto one of the soft toys in particular: a plush Red Panda. He has been squeezing and stroking it, and took it to theatre with him. (It came back with a name tag, like a patient.) The ICU staff have been discussing how to clean his toys, since nobody wants to have to take them away.
Meanwhile, Cathy and I are exploring the area around the hospital, finding the best places to grab a bite to eat and so forth. We've, thus, discovered the luxurious cinema in Silvia Park: leather-ish couches! Movie: Bourne Ultimatum.
Corwin has E.Z.Derm on his legs and back, while the integra everywhere else seems to be holding. He is otherwise lively and determined. I think we would all have given up ages ago but that Corwin is just so determined to get better.
The way the infections always hin the back and thighs bothers the physicist in me... Corwin's dressings are irrigated regularily with an antibiotic thingy (sulphur-something miocin? cannot find the product online, I'll have to check.) However, there don't seem to be irrigation tubes underneith him (understandable). At the end of the day, the dressings in the thigh and back are saturated... this means that no new solution can enter that area (like you cannot pick up water with a saturated towel) which must reduce it's effectiveness in those areas.
I'll have to mention this.
Corwin has managed to bite through his breathing tube, so it was moved to his nose. (Curious: he is fed through his nose and breaths through his mouth...) Wounds continue clean enough. Crunch-Day is Wednesday (5th)... should he follow his previous pattern, he should be ready to receive the skin culture. Then that has to avoid infection.
I start work again on the 11th.
He looked very grey with red veins showing oround the eyes, which seemed a bit sunken. If I didn't already know, I'd conclude that he was very sick. He was awake and responding to people around him, had stories and songs, and went to sleep looking more peaceful.
The internal bleeding, from before, has been identified. Corwin does not have any ulsers, it appears that his nasogastric tube has been taking bits out of his stomach lining when it was aspirated with a syringe. Solution: aspirate gently.
I'll be spending the night and tomorrow at Middlemore.
The integra on his legs and back has failed, though his chest still looks good. He is being treated for the infection tonight and the next 48 hours will be critical. He's been fighting a long time and he is very tired.
Come Wednesday (5th), the skin culture will have arrived. The idea is to take Corwin back to theatre every day in the hope of getting him back to the condition he was in on the last Wednesday. In preparation, skin has been harvested from his scalp (again) to go over his kneck (for tracheation) and various places on his chest where sensors and other lines need to go.
And only yesterday we were discussing getting him on solids and working out a play routine. Those who have been following this know we've been here before. The situation is better this time in that some of the treatment remains successful. It is worse in the sence that Corwin is now very tired - we can only hope he has the energy for another big push.
Meanwhile, Corwin's outstanding kindy fees are hanging over us. The matter is complicated by a period that Cathy was ill and Gran had to take care of him while I looked after her. We understood incame support would be picking up some of the tab but they have just been providing endless red tape in response to queries.... c'mon guys, surely there must be something to handle the circumstances?
Cathy and I are home overnight since we're more likely to get some sleep here. Corwin has theatre tomorrow... we'll time our return for his. Gran is doing vigil. (Cathy and I have both had overnighters with Corwin now... we're nackered!)
I just keep remembering: Corwin's always been lucky.
He had to endure this three times last night, a process that leaves him trembling. It may be better to increase his dose rate, or go back to the infusor - at least overnight, where the biggest delays occur. I'll have to ask about this. The rest of his injuries are doing quite well. It has been hinted that they are doing so well that the next stage of his treatment could start early. But I cannot say more at this stage. By the dice-roll analogy earlier, he's managed to roll a few double-sixes in a row.
Tuesday evening (28th), Corwin had another bout of bleeding (issuing from the mouth). An ulcer is suspected this time and his next theatre session will see this checked with an endoscope. He has been given blood on Wednesday, monitored closely, and has been stable all through. His medication (morphine, vitamin C) is now bypassing his stomach, JIC.
But there is confidence that he will be started on solid foods in the next few days... he's looking forward to his marshmallows and is dying for a drink of water (he gets all the fluid he needs, but his mouth dones't know that.)
I mentioned some concerns about "standard of care", earlier. This mostly involved attitudes that we have observed as a family but also some specific observations involving routine care and huygene. Our concerns were brought to the attention of the burns consultant, who took immediate steps to rectify the issue. We saw marked improvement within ten minutes.
Meanwhile, Whangaparaoa Primary Year2 Students have made cards in class, after one student brought the RT in to discuss. Corwin has seen them and has responded to the pictures and messages they contain. It is good to see the message in the publicity taking effect. The strong concerned/compassionate responce from 6-yaer olds(?) is reassuring for the future too.
I've got to head back now. Cathy has been with Corwin all day, and has said she wants to be with him tonight. I'll try to talk her into a good night's sleep instead and I'll do another night (I had mine this morning). Failing that, I want to be available should she need me.
Corwin should be in theatre right now, I should learn how much my concerns were grounded by the time I get back.
Anyway, Corwin has been watching cartoons on his personal TV (never been much of one for TV before) and we were able to locate and set-up a CD player for him. There is also a large shelf for his toys and books. I was able to read his a story, sing a song, and he went to sleep looking very peaceful at about 18:30.
The room is bigger than our master bedroom at home, appointed like a five-star hotel room (sans kitchenette and minibar). His bed is a special air-bed (designed for burns patients) which makes an aweful noise. There is a spare bed and a lay-z-boy chair for all-night visits. (If there was a minibar, I'd be there tonight!)
I have halved the music in the player due to space constraints. I only get 30MiB off ihug - they charge at $1 per additional MiB. But that's fine - all the music is available for download at various places with varying legality.
The sore throat is still a problem, as is diarrhea. However, he has been playing with one of his balloons (I've tied the string to his finger) and the play-therapy people have found him a musical toy. He's even given some of those soft toys a squeeze. Nurses say he has been a model patient, and very co-operative. Mostly, though, he is very bored.
The Warehouse pyjamas have been tested and found to have met the labelling standard. Homever the standard is being reviewed. I have asked that Corwin's spare PJs got the same testing, to see to what extent the fire-retardant properties have lasted the 2-3 months since purchase. The standard itself is being reviewed.
I have suggested that a label which allows consumers to compare fire-resistance in garments should be considered. Something similar to the SPF factor for sunblock. I believe it would be a simple matter to include some indication as to how well a garment meets the requirements[1]... then it allows manufacturers to compete on safety as well as style and price.
Perhaps there could be a study done to see how well various brands retain their compliance over time? After all, there is no point buying fire-resistance which washes out with the first[2] wash. Consumer perhaps could do this?
Meanwhile, the Warehouse has been behaving properly. They withdrew their product pending the investigation and made no attempt at spin. I have received a nice email from them, and Corwin has received a large hamper stuffed with toys, books, and music, including a Teddy Bear almost as big as he is!
There are far too many toys for the foot of his bed. Some of them have found perches on bits of equipment and ledges around the room and he seems curious about all these animals with googly eyes watching him wherever he looks.
Cathy and I are home tonight, and we will be celebrating his room "upgrade" with a bubbly brekky tomorrow morning before heading off to help him settle in. We've had precious little to celebrate so far so we're taking our opportunities where we can.
Cheers Corwin, you are an unbelievably brave and strong little boy.
Amended:
[1]... i.e. LFR(6,36): LFR means it meets the current standard for "Low Fire Risk"; the first number is the time is seconds to ignite a standard sample; the second number is the time in seconds to completely consume the sample. The burn test is actually done now, so no additional compliance cost is involved. I know this example is full of holes: I am a scientist and I know the surrounding issues. I can write a more scientific standard if asked.
[2]... that is: "second wash": the standard already calls for one wash. The above example does not adress this issue either, but at least allows for a reasonable comparison.
There have been objections to filming in the ICU so the interview didn't happen today after all. Some doctors think that it is a good opportunity to highlight the tissue-bank problem... so maybe next week... we'll see.
There has been some talk of moving Corwin to the Burns Unit too. I guess the feeling is that he is stable enough not to require 24 hour intensive care, though his condition remains extremely serious.
The story is to focus on the tissue/organ shortage, but is expected to show some footage of Corwin if we can do this without exposing him. And iff ICU folk agree. Basically, if it were anyone else I wouldn't even be discussing it.
I had a day with Corwin today. He has been removed from his sedative and the respirator is disconnected. He's breathing completely by himself now, and the integra is right on track. It's quite exciting after more-or-less resigning ourselves for the worst. I daren't even whisper the hope for fear of jinxing it.
Corwin's scalp has almost grown back (the dressing is off and the area is pink.) The burned area of his face is a bright peach colour. Both very good signs.
He isn't happy with his situation. The sedative has had an amnesiac effect and between that and the trauma his last memories are probably of playing next to the heater. He'll have no memory of going to bed and now he wakes up there and unable to really move. Naturally he's upset. So Cathy and I have been spending quite a bit of time with him. He hasn't been talking, but he has been responding a bit to being talked to. And he's still on morphine, which is keeping him pretty mellow.
The Rodney Times has run their followup, an online version is here. They also did a related article about the shortage of tissue donors in NZ. The paper went out on Tuesday (yesterday) and (I heard) by this afternoon the hospital had received two calls from people offering Corwin their skin.
I mean: what a wonderful offer! Who would have guessed: I get misty thinking of it.
With regret, we have to refuse these unprecedented offers. The skin shortage concerns cadaver skin. So unless you happen to know of the location of a well-preserved dead body someplace, or where one is going to turn up...
Live skin donation has been considered and there is no shortage of willing donors right here. (Should this become a problem, I will let you know. Stay healthy.) Right now, Corwin's body is busy encorporating and converting the integra layer. When this processes reaches the desired state (which takes about 3 weeks) new grafts are added. The idea is to use skin from his scalp as well as using the cultured cells from Australia. If it is deemed appropriate, my skin may also be used.
The trouble with tissue donation is that you have to be dead first. So add this to the list of things you can do. Put it in your will. Put it on your drivers license. Tell your relatives. Look at your skin and think how many Corwin-sized patches there are: that's how many Corwin's you can help, maybe save, after you are dead. Alternatively, it's worm food. Speaking for myself, this is not a hard choice.
More information about organ and tissue donation in New Zealand.
More related news: http://www.stuff.co.nz/4172797a10.html
I have been hunting for any sign of this treatment ever having been used on anybody Corwin's age (and extent of injury) before now. I have yet to find anything. I have also been looking up methods of calculating burn risks.
The rule of thumb is to take the percent of lost skin and add the age. This is the chance of dying. For Corwin this is 94% (but that was at the start of treatment). In other words, the chance of survival was 6% ... much better odds than my dice-rolling analogy would suggest.
However, with the integra and other care, a 70% burn usually ends up as 50% survival. Then Corwin's survival starts to look like 26%. OTOH: good statistics are really hard to find. Most studies, for example, seem to lump everyone under the age of 20 in the same group. And I have yet to find any study following treatment through. Everyone seems to agree that the rule of thumb is usually too pessimistic. In the end, every patient is unique.
You need Macromedia Flash player 7 to use it. Firefox users can install this as an addon (tools > addons), everyone else will have to go visit Macromedia.
The atmosphere in ICU is positive and Corwin's music has been playing all day. He hoisted his eyes open when I came in and managed a faint smile. I massaged his feet and and told him I loved him and am very proud of him. Cathy was there and repeated the message. And all the nurses present also. The promise of six marshmallows was repeated (nurses orders) for good boys who get better.
He is actually looking really good for the first time in ages. He is recovering quickly from theatre, he is pink and wriggly. He is breathing unaided (the respirator is just supplying a more oxygenated mix of warm air) and strongly. The burn around his kneck looks pink and clear (previously blotchy with dark plum patches) which looks good to my untutored eye. Only the little finger on his left hand is still black.
As I enter and leave the ICU, I pass an extended family all camped out in one of the waiting rooms. I am reminded that there are other people also in trouble though everyone seems to know about Corwin. I try to give what encouragement I can. In their turn, they add Corwin to their prayers.
There have been a lot of expressions of support. People offering daily prayers, incantations, etc. number in the thousands (conservative). Some peaple have asked if there is anything they can do. There is: wherever you live, an ICU, a Burns Unit, part of a Hospital, needs your help. Burns treatment is very expensive. Donate something... anything; money is always welcome, but time and labour is often appreciated. It won't be glamorous, but time you spend pushing a broom can be time someone more skilled can be helping save a life. Fundraise, toys for play-therapy, whatever. If you don't know what you can do, ask.
There was a small item in the Herald today including a statement from the Warehouse, which is where we got Corwin's pyjamas. I have, also, a letter enquiring about Corwin from the NZ Woman's Weekly. So, media attention is hotting up, hence the "notes for the press" comment at the top. Anyone with PR experience, please feel free to offer advise.
Meanwhile the Rodney Times will be printing a followup story which includes comments from one of Corwin's doctors. This should be a relief to all those in Rodney/Northland who read the first story.
A related artical online: http://www.stuff.co.nz/4170393a11.html
I'm back at home tonight - cats, maintenance, blog, you know how it is. Gran and Cathy are staying behind. It's been quite full-on so I'm welcoming a bit of solitude.
Corwin is completely covered with integra right now, and it is still looking good. Everyone knows this is his last chance, so they are being extra cautious. Dressing are changed every morning in theatre, so I'm writing this around lunch time.
AFAIK: the plan is that the integra is to form a base layer which will eventually become part of his natural skin. The cultured skin, which I haven't any word on yet, will be applied over the top of this. I have been picturing the culture as a kind of big sheet, but this turns out to be incorrect. In fact, it will be a sludgy liquid - and it will be sprayed on. I gather that it will be a week before the integra will be ready, and an infection can hit any time, rendering it all moot.
The spare PJs have been picked up by the Commerce Commission and they will be handling the labelling issue side of things. I have heard that the Minister of Commerce has been breifed. I've warned ICU people about this so they can brace for the media interest.
The existence of the blog and the RT article has produced some ire in the hospital. I havn't been making a secret of the blog or anything, but it seems some people have trouble realising what it means. This is the internet... people are going to find out. Should I just shut up and risk a less sympathetic journalist getting the story first?
Corwin had a good night, though he has dark rings around his eyes this morning. He was heavily sedated in preparation for his trip to theatre for a dressing change. Good luck Corwin.
Corwin now has a row of stuffed toys at the bottom of his bed which go everywhere with him - including (the trip to) theatre, apparently. Sort-of cheery, nestled amongst all the equipment. I've sometime wondered about these gifts when the outlook is so bleak, but then I see hom his eyes light up when he sees them and I figure they are helping.
Some people have sent money - I have thought about this quite hard and I've decided to open a bank account for Corwin. One of his favorite activities is shopping and I'm sure it will delight him to have his own spending money. If he doesn't get to use it - well, I'll think about that later. Financially, we are doing OK. The biggest single expence is the petrol cost of travel between Red Beach and Middlemore - which is being subsidised by the health broard responsible for the hospital. Medical costs are nil (something that seems to amaze USA-folk). Not only do we not have to worry about the cost of Corwin's treatment, but there is no insurance hit for us either.
A couple of days ago I used the analogy of a climbing accident to illustrate how someone can be healthy, yet be in a bad way. We shouldn't really be surprised at this, the long term prognosis for all of us, no matter how healthy, is just as bad. (How many of you realistically expect to see 200?) It's just that "long term", for Corwin, is rather closer than that.
Well, I have another analogy for you:
It is easy to get overwhealmed by dramatic wounds. There is a strong temptation to give up, and spend time, effort, resources, on someone who is more likely (in the long term) to benifit from them. However, there are actually quite a lot of individual steps that make up that long-term probability. For each individual step, the odds are better.
So, treatment is a bit like needing to roll a dozen sixes in a row. The odds of succeeding are about 1:3,000,000,000. But, the odds that the next roll will be a 6 is 1:6 ... and each six rolled improves the odds exponentially. This is why it is always worth giving first aid.
In Corwin's case the dice are loaded - in his favour. Corwin is very young and very strong and he wants to get better. Something external actually has to interfere to prevent a six being rolled. Also, some missed sixes are recoverable: ther usually just mean we have to roll an extra couple.
With this sort of thing, there is usually a point where each roll can only lead to worse odds afterwards. We havn't reached that point yet (at time of writing: I could go back this afternoon and discover...)
For those who feel I've been a bit bleak, this is the kind of hope we can have. ome people have wondered if this is a "false hope". I'm not sure. The danger of a false hope is that, having come to expect the best, the actual outcome is crushing. I don't think this kind of hope leads to that kind of result.
This evening two of the doctors had a chat with us about Corwin's condition and plans for the future. Corwin is doing very well considering. In fact, as far as the integra is concerned, this is the best he has ever done. His dressings are being changed every day, and in theatre. The doctor who has been seeing to this over the week is giving up a planned weekend with his family to see it through.
This just in:
I have made a page that anyone can put messages on, to leave good wishes and prayers for Corwin and your family. If you'd like to make this link public to those you'd like to know about it, they can leave messages and graphics and I will upload their messages onto the site (I'm afraid I couldn't figure out how to let them upload their messages directly).I'll be putting this link in the sidebar as well.http://iblog.net.au/koolkatkiwi/
Positive thoughts and good wishes wending their way to you . . .
I've lost count now how many religions have chipped in with prayers, mantras, dances, insence etc. Nobodies offered to sacrifice a goat or a cockeral... yet. The Sikhs neer Middlemore have been praying too. Total strangers have been offering some sort of comfort. Even a little girl in Orewa, "Are you Corwin's daddy?" told me, breathlessly, that she hoped Corwin will get better soon - but not too soon because she's been getting lots of treats.
Yesterday afternoon and this morning Corwin was in and out of theatre being wrapped in integra. So I didn't get to see him much 'till this evening. Read him stories and sung to him while he squeezed my hand. All his vitals are good and the integra looks fine so far.
This is a bit like having one of those climbing accidents where you end up hanging onto someone dangling over a long drop. You can see they look fine, fit, and healthy. All their vitals are good - pulse and respiration a tad on the high side, but this is expected. The trouble is, they are slipping. The only ropes are slick with ice, and there is a blizzard coming ... any time now. They are expected to stay healthy ... all ... the way ... to ..... the bottom.
Short term, Corwin remains stable. Long term prospects are still very poor. He's being thrown some rope but he's gonna have to climb up it himself... there's a time limit: he's racing the next infection.
In other news: Another small child has been seriously burned in a similar accident involving, possibly, the same kind of pygamas from the same supplier. (I don't know any more than that, not everyone has a blog.) The Commerce Commission is investigating. I'm supplying Corwin's other pair so the link can be confirmed. If it is, The supplier has agreed to pull the entire line. If this happens, it'll no doubt be big news and you'll hear about it in all the (NZ) Dailies.
Caveat: Even with PJs that genuinely meet the standard, there is no way to tell if the treatment is still there after a few washes (OK: you could set fire to a spare set and time it). Treat all pyjamas (indeed: all clothing) as if they have no fire retarding properties at all. Nuff said.
Now for some sport: Sitting up with the night nurses is an education all by itself. We are regaled by tales of previous patients (who mostly lived). Such as one patient whose heart would stop beating every time they suctioned his breathing tube. After the initial panic, they discovered that his heart would restart itself a few seconds after they would normally intervene. This was so reliable that they would use him to tease new residents and visiting doctors.
And finally, the weather: It is a dark and stormy night. Really: it's pelting down out there! Can we cut to commercial now? ...
There was also some concern that there is something wrong with that tube. Though he is breathing fine, it is proving difficult to clean. He's in theatre again this afternoon, so they will look at it then. Chances are he'll end up with a new one.
This approach has quite a different feel to it. Before, the team was fighting with Corwin helping. Now it is up to Corwin, and he is putting up a hell of a fight. The team is helping him.
His overall status is as follows: nobody on the team thinks he will make it. That said, right now he is showing signs of healing in places. Fresh integra (artificial skin) will be placed on those areas in the hope that will help.
This is a situation common in intensive care: the patient is looking good right now but their long-term prospects are slim to non-existent. This round of theatre will be the last for a bit. There will be a meeting of the entire team in a few days to reassess the situation. If they feel there is no positive change, they'll wake him up completely so we can be together at the end. We have a big bag of marshmallows for when his mouth-tube is removed.
After the ICU shift change starting at 7am we all went back to the whare to rest. I finally got some shuteye on the understanding I'd be woken for breakfast at 8:30. But they let me sleep, instead, until after 12!! This was a work day! (Oh well, boss was warned: I've sent off a contrite e-mail.)
So I went to see Corwin again at 12:30-ish (having had lunch provided: didn't feel much like eating but you should never refuse calories at a time like this. Open mouth, insert food, close mouth, chew, swallow - repeat until food gone.) He was much improved over last night - even the feet getting back to the right colour.
Corwin's room looks like Xmas all over again with the decorations and presents that have turned up. He nom has two stuffed toys (one that chatters if you squeeze it's tummy - which he has responded to) a plastic action figure and two new books ("Peter Rabbit" and "The Velveteen Rabbit").
He spent some time trying to spit his mouth tube out - pushing against the binding with his tougue. He needed it for theatre today, but the anaesthetist says he can have that out if he can breath unaided afterwards. This will be a great relief to him, and I will be taking him marshmallows.
Cathy and Gran are holding up quite well - we are sitting with him in shifts, reading stories, massaging his feet, holding his hands, singing to him' and playing hi CD.
Corwin's ICU mix is:
Gayatri Mantra BSG
-- (Main Title Opening music from the Battlestar Galactica tv series remake);
Jumping Jack Flash, She's a Rainbow -- (Rolling Stones);
Besame Mucho, I've Got You Under My Skin, Just the Way You Are -- (Diana Krall);
Bob the Builder -- (BBC Music);
Long Long Journey, Carribean Blue -- (Enya);
Being Green, Sence of Wonder -- (Van Morrison);
Moment of Peace -- (Gregorian II);
Misty, Mood Indigo, Hush-a-bye -- (Jazz for Lovers).
There have been more e-mails...
All my love and all my support for you all, I wish things could be better. Thinking of your lovely vibrant boy, he has a strong spirit.. . . . .
Mother just sent me a link to your blog about Corwin. I really hope Corwin is able to get through this and I’ll be able to meet him when I finally make it over to New Zealand to see you and Cathryn. He looks like a really cute kid.. . . . .
Anyway I just wanted to let you know that I am thinking of you all and this lunch time I will go to the local shrine and throw a 5 yen coin in for luck for Corwin.
(03:35 - still no sleep): Just received word from Gran at Middlemore:
Corwin's bloodpressure keeps dipping dangerously. As soon as I think I can drive safely, I'm on my way.
I should be there now, not writing this. There is just no way of describing what this feels like.
(00:43 - can't sleep): I just got this, thought I'd share:
Simon, I have been following your blog. You are all too brave for words. I have a sister in Canada who's very religious. She belongs to an internet prayer group, and there are people all over the States and Canada praying for Corwin (and you all). They usually make websites for people, with things like that candle you had, and all their wishes and prayers on it. I was hoping Corwin would get to see it, because I told her he loved balloons, and I'm sure there will be lots on the website.No link provided.
Corwin is basically stable and holding off his infection. However, the remaining bacteria are growing resistant to the antibiotics. The graft on his back is failing. His body has rejected all the temporary coverings. Unless the raw body surface can be cleaned of bacteria by the time the cultured skin arrives, that will be rejected also.
The team is going to have one last big effort getting him cleaned up. There is nothing left after that to clean, the surface will be down to bare muscle. This is so we can say we've done everything possible. Corwin is dying and there is nothing anybody can do. It's all up to him now. Either he throws off the infection or he doesn't.
Sweet DreamsLie soft little boy - lie soft
Your pillows are propped - lie soft
Sleep and sweet dreams
Tomorrow, we'll hold you, tomorrow.The flames are all gone - lie soft
Slumber in peace - lie soft
Can't reach your hands, so we're
Holding your feet, holdingWho's a brave little boy - lie soft
A future in joy - lie soft
We all love you, we're here now
Safe to sleep now, safeSafe now - lie soft
Heal up now - lie soft
Sweet dreams
Corwin is thriving on his yokult and milk-stuff diet. He was active, looking around, wriggling all his limbs, exploring his breathing tube (in his mouth) with his toungue and mouth, reaching and holding and looking around him. Generally a positive feeling all round.
There is concern about the circulation to one leg, the foot is quite mottled, but the big wriggles should help as well as his heparinized saline (salty-water with heparin in it to prevent clots). The other risk is that arteries can pinch themselves off for all kinds of reasons, which has to be watched for. Circulation is being closely monitored.
There is some disagreement about the five-day time frame for the new skin. Apparently it normally takes more like ten days. We'll find out tomorrow when Corwin's burns consultant nurse returns. His dressings are being changed every day now. There seemed to be no concern about todays change which we are all very pleased with.
Cathy has had some retail therapy and is much better for it. I'll have to remember to tell her how nice her new clothes look on her ;) and I expect to have her home with me on Monday (tomorrow) and Tuesday. This is quite hard for her because the first time she was persuaded to rest, Corwin got very ill (August 4 entry). Once home she has hot, herbal baths, meals cooked for her, long lies in, and massage. Housework is forbidden, shopping encouraged.
I'll be taking my camera in, group/family photo coming soon.
The infection has responded to antibiotics' and he is considered "stable", though still vulnerable to further infections. I understand his inner bandages have been soaked with a targeted antibiotic and he is receiving broad-spectrum antibiotics to his blood-stream.
I am told that Corwin has "an immence inner strength that has been carrying him through".
The lab in Adelaide has received about 25cm2 of skin and has started growing enough to cover his whole body. Not only are they proceding with this quite quickly, they are also not charging for it. I am told the process is very expencive and the lab has waived the cost after hearing Corwin's circumstances. I don't know how they're squaring this with their boss or their other commitments, but thanks people.
We expect the skin next week. Provided that it "takes", things should be much better after that. Even so, we are still expecting weeks of intensive care. Meanwhile, the country has been combed for more cadaver skin and I have been approach about the possibility of donating some of mine, JIC.
There has been fun with diarrhea, so yoghurt has been added to his diet (yokult) through his nasal feeder. It tastes quite nice so it's a shame it isn't going by his mouth.
Gran finally got a chance to read the RT article. She is upset at the innaccuracy of the report of her involvement... something she is taking quite to heart, though I'm not sure I understand why exactly. I mean, the paper basically says she's a hero and she's upset?
It seems she is concerned, for example, that some people may think that she had a wool blanket around Corwin while pouring water over him. This was not the case: the water was poured directly over his burns and surrounding skin. She did not use a bucket, her description of "pouring buckets of water over" him was supposed to indicate quantity rather than method. And she didn't use a blanket to put the flames out (an appropriate responce BTW) as Corwin was not on fire when she got to him. (Which goes to show how dangerous the garment and hot the fire.)
She is very worried that people will think poorly of her as a result of reading the article. She is also upset with me, that I didn't consult her before giving the initial interview. I can sort-of see that one. She had an opportunity to set the record straight early an, which she declined, and a week to make her concerns known, which she didn't do. She knew about the blog, and made no objection to that.
The story dosn't identify her by name, neither does this blog. The only people who will make the connection are people who know anyway, so I don't see the damage. B'sides IMO the paper's version of events makes her look better than her version anyway.
Many things contributed to my decision to approach the press, the way accidents were going, the desire to get some positive outcome from this, to name two. I was also aware that there was (is?) a fad for "child gets hurt/abused" stories in the dailies at the time so I figured it was only a matter of time before the story made it into the press. What then?
This way, I got to choose the paper that breaks the story and influence the direction of the story. I got an older, more sympathetic, journalist who was very mindful of the feelings involved. We were both concerned that the story was about fire safety, and corwin's condition was to drive the message.
I think the importance of this message (fire-resistant labels don't really mean anything much, pilot lights are also dangerous, don't use cabinet gas heaters, this can happen to anybody no matter how careful) and the net benifit of the publicity outweighs her personal reasons (as she has related to me so far) to avoid this. If she wants to resent me for something, let her resent me for that.
Of course: I may just be an insensitive sod. So anyone wants to e-mail me to that effect, I'll take it as a reality check.
Corwin was scheduled for theatre at 9:15 this morning and wasn't out until 6pm. Even then, I didn't get to see him until 6:30... massive infections. ICU were still going flat out to control the infections and get him stabilised against the risk of septicemia, which will be difficult to treat. The next 24hrs will be crucial.
Cathy and Gran are staying overnight, I will rejoin them first thing tomorrow. Expect the next post to be late again: I tried adding to the blog from Middlemore but Windows XP does not have an FTP client (blog.html is edited at home and sent to the web-site by ftp) normally and I'm not permitted to install one. My laptop is fubar'd so I cannot use that.
This is a roller-coaster ride and writing this stupid blog is keeping me sane. It seems as though every time I spend a day away, Corwin gets worse! That's an illusion, of course. It's just that Tuesday is work-day and Wednesday is theatre. Any trouble will always be found on a Wednesday... which is when I next look in.
On the upside: I asked earlier about skin cultures. It seems someone more senior has got wind of the enquiry and has given the go-ahead. Skin from Corwin's scalp has gone to Adelade for culturing, and they have promised enough skin for his whole body in five days. So, if he lives that long, there is skin for him (fingers crossed).
Corwin's room in ICU has a bunch of red balloons from Gran, and somebody has left him a foil helium balloon saying "We love you". Corwin loves balloons.
Cards etc. addressed to Corwin c/o ICU, Middlemore Hospital, seem to get there. He's received a very nice one with a picture of Pohutukawa blossoms (his favorite).
This was a work day today - the students all have an assessment today so I couldn't tell them anything. However, those without assessments took the opportunity to ask deeper questions. I also delivered that Linux tutorial. These are always interesting: most students arrive feeling aggreived that they need to know about this, but end up enjoying the sence of freedom as they find themselves trying things they wouldn't normally even have thought possible.
Cathy came into the CBD with me, then took the train to Middlemore to see Corwin. He's had another good day. She says he woke for her visit, made eye contact, and gave her finger a squeeze. Is he trying to reassure her? "I'm going to be OK Mummy."
Tomorrow morning, more grafts.
Now he is strong again, so removing the dead/infected tissue seems to have been the right thing to do. It means, however, that the last site for harvesting skin is from his sclp. The idea is to take some, wait for it to grow back, take some more, meanwhile continuing the use of cadaver skin.
I asked about skin cultures. The doctors all felt that this was not a good idea. The procedure is lengthy and gives poor results. OTOH: Corwin's sedation seems a bit lighter now, allowing him to wake for a few minutes and look around. He has been responding to our voices today, and last-night he woke up when we were singing to him (Besame Mucho and Under My Skin).
Cathy is feeling positive, though a bit run down: she is staying home tonight and will have her "day off" tomorrow. Gran is looking positive for her rest.
I was sent a candle in my e-mail today. Actually quite sweet. (Link updated 8/8/07.)
Thank's to all those who have sent support. Here are some samples:
Just to let you know we've been thinking of you and was relieved when Athol [Corwin's Uncle] sent me the link to the blog. Such and amazingly positive idea ... it gives us a chance to follow Corwins progress and send special thoughts, prayers. I'm sure it means a lot to Ath and others who are far away to be able to follow his progress.
My thoughts are with you in this astonishing situation. I picked up the news yesterday but found it impossible to convey my feelings about this straight away yesterday - you have all my support and warmest wishes from 12,000 miles away, but no words are equal to this situation.
All best and give that little monster a mental hug from me. I went home after talking to you and cuddled my little 2 year old daughter till she became thoroughly pissed off with me.
Next post may be late.
I got to Middlemore at 1pm (NZT), Thursday, to learn that he was in theatre to check his progress and change his dressings. He got back to ICU around 2, so Cathy and I went to see him 2:30. We waited and waited, and it became clear that something was wrong.
As it was getting dark, the burns sugeon came out to see us - looking tired and anxious. He recounted the history so far... which told us that his news was very bad. Here's the situation:
Corwin has had skin grafts from both thighs to his back and one hand. The grafts are mostly fine - just a bit around the waist needed cleaning up. He has had artificial skin to the rest. All the artificial skin had become infected and needed to be replaced. They are now using cadaver skin everywhere there are no grafts.
During all this, he suffered a small renal (kidney) failure and the circulation to one leg had stopped. Investigating this (a specialist was called for this) was causing the delay. The circulation started again during the investigation and the opinion is that the artery was pinched off. Corwin's circulation has been monitored frequently since then.
However: it was noticed that the donor regions (the places the skin grafts were taken from) were an unusual dark colour, like very bad, deep, bruising. Investigation showed that the site was not healing - nobody can say what has caused this, it is supposed to be very rare. At this point I feel like I'm in an episode of House!
Corwin had to have the dead tissue from the donor region removed (or die). This was bad because the renal failure meant that he would likely not survive the operation. Even if he did, there is not enough skin to harvest to cover all the raw areas... (effectively as if he had been burned to 95% instead of 65%) making his long-term survival unlikely. The anaethesiologist said we should say our goodbyes.
We all accompanied Corwin into theatre, then stayed in a spare room at Kidz First to wait.
Very late that evening, we were informed that Corwin had survived. His condition was not considered stable and it was clear he could die at any time. We saw Corwin in ICU right away to offer our congratulations to his sleeping form, hold his hand and so on. He was obviously in a bad way, and there was a lot of concerned activity around him. Then we went off to try get some sleep, reflecting that Corwin has always been tough.
This morning, Corwins condition was "slightly improved" and the ICU staff seemed more hopeful.
His circulation problems have completely cleared up. You test by squeezing something so it turns white and then timing how long it takes to turn pink. On thursday it would take his toes 6 seconds, this morning 2, and this afternoon it was instant.
The pulse in his extremeties (fingers and toes) is very strong. And the kidney problems seem to be clearing up. Possibly these were related to the condition of the donor sites and the infection. Let us hope so.
Blood pressure is lower, from memory 94/40, temp high (38.3C), oxygenation low (95%). But nothing anybody is concerned about. He is getting 1ml of morphine solution (16mg in 50ml) each hour - lucky guy - and another drug I can't remember. He's eating well ... he's getting 100ml of his nutrient-milk each hour. This is effectively 2.4 litres of Up-n-Go a day!
The surgeons are happy enough with his progress to attempt what grafting they can tomorrow morning. This will be skin from his scalp, to his chest (does this mean a hairy chest later on?) I intend to ask the surgeons about cloning/growing some of Corwin's skin to help make up the deficit.
The plan now is to use scalp skin and, when it has healed sufficiently, the back skin (remember, that's a graft too) to cover the rest in time. Meanwhile cadaver skin is to be used. This extends his hospital stay considerably. We are warned that it is unusual for anyone to suvive this extent of injury. OTOH: it is unusual for anyone to survive that last operation.
Throughout the entire hospital staff have been very supportive. The nurse liason stayed after his (12 hour) shift last night and was diligent keeping us up to date. After bad news, we were not allowed anywhere alone. People ordered meals for us during the day today. The ICU team seemed affected by the turn of events and, we were told, those with the inclination have been praying.
Corwin has been promised lots of marshmallows upon recovery.
Cathy and Gran are in situ. They tell me that Corwin has had a restful day listening to music and being read stories. We're taking the opportunity to read to him quite a bit while he cannot run away :)
Meanwhile, the Rodney Times has been kind enough to ask consumer.org about gas heaters, sleepware, and children. Basically, this is what they have to say:
We think the radiant type portable gas heaters are very dangerous, and are not suitable for heating rooms where there may be young children. If there is no alternative, they should be used with a suitable fire guard to ensure children cannot get close enough to get burned. Wall and fireplace mounted, radiant style models should also be fitted with a fixed guard.So there you have it. Cathy will feel vindicated since she has been advocating the use of a fire-guard for a while. But where from?However, the main issue here seems to be the flammability of the pyjamas. Flammability is covered by a mandatory standard, and all children's nightwear must comply. This link explains a bit more, and the Commerce Commission may be interested in investigating whether the pyjamas comply with the rules.
I will be relieving Gran on Friday, involving a John LeCarre style handoff of the parking pass, so she can have a Day To Get Things Done. So my next blog may be a tad late.
Cathy is very much better for her enforced rest; she's staying overnight at Middlemore tonight. So it's just me and three cats here.
I've been talking to a journalist from the Rodney Times this morning. Hopefully this experience will provide help other families realise the risks: we are going through the coldest part of winter and the nurses tell me this is the season for bad burns. He seems sympathetic and unlikely to sensationalize the story over much. We'll see...
Since I'm doing so much posting to the blog, I have installed an ftp client (fireFTP) to firefox. But, apart from that, I'm not using any special software. All the pages are tested in Mozilla Firefox and should look fine in any standards compliant browser (not IE, it seems - I'll have to see about that.) For those who have asked, I am using: Ubuntu Linux 7.04 on a custom-build intel core2 duo machine. These pages are edited with plain old gedit and image manipulation is by The GIMP. But that's enough of that - this blog is about Corwin.
Middlemore has been quite pushed with a large influx of patients. Corwin's team, since he's doing well, was reduced for a while.
All his tests have come back negative, he's keeping cool (temp 37.5C you see) and really sucking down his neutrients. Four more hours in theatre tomorrow, grafts to the hands and a total bodywrap change. We'll see him in the afternoon. Everyone says he is making a slow but steady recovery... the only cautionary notes concern some diorrhia (which has cleared up) and funny brown urine.
Cathy is with me again tonight and tomorrow morning. The stay at home has done her good. But I've had insomnia a couple of nights now so it is early bedtime for me. TTFN.
One side effect of the blog is that it is read by people we don't know. I've received a message of support from a US Marine unit in Afganistan for eg. I think this is kinda neat. I hope nobody minds the lack of formal recognition here - or personal replies.... I'd just get swamped.
Corwin's fever seems to have broken properly today, but he's being kept on antibiotics anyway. He's been "in theatre" again, mainly to change his bandages and to have the grafts looked at. He woke up for a few minutes while I was there, long enough to squeeze my finger (ahhh).
Gran is looking better for a night away and I've got Cathy here for tonight and most of tomorrow so she can have a recharge. After that we'll see about staying with Corwin in shifts. (Hopefully I'll be able to edit the blog by remote from a public terminal at Middlemore - there's a n OpenSUSE machine in the cafe!)
Corwin had a fever early this morning. It is normal for burn victims to have a high temperature, but this was more serious so there has been a battery of tests and an increase in antibiotics. When I saw him this afternoon, his temp was still high but not enough to worry - test results are not back yet. In any case, they take cultures regularily and see if anything nasty grows. Infections are spotted very early this way.
When he heard my voice, he opened hi eyes and reached for me. He made a very determined effort to get up too. While soothing him I delivered all the good wishes that have been sent from around the world. Thank you all for your support, it means a lot to us here.
The nurses were immediately taken by early photos of Corwin I provided. It helps them to see what their charges look like when they are not ill... I chose shots of Corwin climbing trees, having a bath, cuddling with Mummy and rough-housing with Daddy. They also appreciated the CD compilation of Corwins favorite music.
Cathy is showing the strain. I am going to try and get her home tomorrow night and pamper her - hot bath, dinner, bed and no arguments.
Gran too... she is quite short tempered now. But she is staying home tonight so she should recharge very well. It is very hard for her of course because she was looking after Corwin when he was burned.
As for me... everything hit all at once last night. I finished off the entry, got a voip call from Grandad (my father), and selected music for the CD. I was listening to Diana Krall's "Under My Skin" ... which has been Corwin's "magic" bedtime song forever - I have sung this to him every night... and I sudddenly needed a drink.
Should be fine now. I only got a little moist when I left him: "Goodnight Corwin, sweet dreams."
Corwin's dead skin has been completely removed and the raw part covered, either with skin from his thigh or artificial skin. So now he is completely bandaged, except for his feet. The team is very happy with his progress, especially as it has meant that they could do so much so soon. He's going to be resting until Wednesday, when they are going to try to replace some more artificial skin with the real deal as well as give him fresh dressings.
As you can see, he is completely bandaged and intubated. His right foot and head are the only parts we can touch, and he likes them stroked. I tried "This Little Piggy" and he looked alarmed when he thought he was going to be tickled.
The first picture is just a closeup, you can see that Corwin's kneck is burned raw - under the chin, one cheek and the bottoms of both ears. The second shows the setup and a very worried Mum.
I waited for him to go to sleep for the pictures. When I came in, he wriggled a bit, tried to reach for me and talk. So he's far from comatose. Every time he wakes he is being told what a good brave boy he is and he's doing so well...
Cathy and Gran look really haggared. The staff are concerned that we should get as much rest as possible since the hard part is yet to come. So I am off to bed.
July 27, 2007
Corwin had a good night: he caused a small fuss by trying to roll over. He had managed to pull out of his splints and disloged some tubes. Apparently he fights the drugs so as to stay awake. That's my boy - never did like bed-times. I'm inclined to see this as a good sign.
His sedation has been increased, but he hasn't needed anything to control his blood-pressure or his temperature and his kidneys continue fine. He's done so well that the surgeons have started skin grafts onto his back, so he has something to lie on. So he spent almost eight hours in theatre today. Thus, no photo - sorry.
He is expected to spend all day tomorrow recovering, so I'll be able to see him then.
Cathy is holding up well. She has settled-in to "The Whare" (koha accomodation from the Maori Health Unit across the road) with the latest Harry Potter. She also has a big book of stories; she and Gran will be reading to Corwin in shifts.
Corwin's aunty Cathryn arrived this afternoon with a welcome supply of hard jubes and a plan to save Hector's Dolphin. This is the first time she has been able to visit Corwin in four years! She will be staying with freinds and providing moral support for for the weekend - then she has to go back to being a government lawyer in Wellington.
I'm back here trying to work out what else needs to be done. Now I am by myself with nobody else relying on me for a bit, I'll be able to get drunk and have a manly sob over the whole thing.
July 26, 2007
A very long and difficult day.
Corwin is in critical condition in the National Burns Center ICU at Middlemoor Hospital. He has deep burns to 2/3 of his body, from the chin down after setting his pyjamas on fire investigating the pilot light on a gas heater earlier this morning.
He has had 6 hours surgery to clear dead skin from half the burns. Another session is planned for the next few days. The burns conultant tells us that Corwin will need weeks to months to graft skin from the unnaffected areas, which he will spend intubated under heavy sedation - basically unconscious.
Everyone has been telling us how brave and well behaved he has been during preparation for surgery. When we were finally able to see him, he was looking around unfocussed and unable to move for the bandages. He seemed to be struggling to stay awake, and responded to being stroked.
We are warned that his injuries are life threatening. He is strong, has shown no sign of any organ failure this kind of injury can produce. The biggest risk now is from infection.
Cathy and Gran will be staying at Middlemore in the interim. I will be keeping things going here and visit frequently. The staff at Middlemero have been very supportive and helpful. We are confident that everything that can be done is being done. Corwin has always been strong, with a positive outlook on life. We are confident for the best.
July 25, 2007:
Finally started a weblog :)
I've been getting stuck in with organising some sort of business (HBCLinux) a lcal LUG (HBCLUG) and some sort of Software Freedom Day events - though that isn't until September.
UALUG have conned me into a third linux tutorial and not a peep so far on getting ECE to actually pay for these. I've managed to wrangle 4 hours a week (Tuesdays 10-3) paid tutoring in the Department of Physics though.
Corwin has been a happy chappy. He's starting to experiment with talking again - mostly just with me at the mo - which is encouraging. Today, he has said a few words to the world in general when Cathy was here... he said "talk" and "five" (meaning "high-five", asking for a hand-slap: you know). And he continues his schemes to get at the bag of marshmallows at the back of the pantry.
Lois Robinson;
Sam Young;
Linda Stanworth;
Linda and Philip;
Veryan Del Moro;
Bill & Kath Worsfold;
Tony & Judy Laity
Rosemary Cullen;
Kate Bevis;
Connie Hamelin;
Eleanor Burne-Jones;
Athol & Tom Wells
Barry Peck;
Nelly Toia;
Helen Ruston & family;
Niki & Mitzie O'Brien;
Sue Young;
Robin Capper;
Ant & Ali Laity
Marlin, Deb, Eli, and Nate;
Rob, Emma, Marni and Freddie Brewis;
James (8) Daniel (6) & Cameron (4) Henderson;
James, Cat, Hugo, Anton, Viggo and Noel Brewis
All the parents and children at Orewa Private Kindy;
Year 2 class at Whangaparaoa Primary School
Mike Bishara;
Everyone at the ICU and NBC; ... and many more, you know who you are.
Please understand:
This blog is a collection of my thoughts and impressions about what is going on. It should be read with common sense engaged. I will get stuff wrong. If you spot something, please let me know.
Simon Bridge
2008
