Wednesday Wrap-up

Josh returned from Melbourne Sunday afternoon.  While in Melbourne he started on 2 hour blocks in the Oxygen tank, twice a day, and built up to 3 hours twice daily, over the 4 days he was in Melbourne.  In total he did 20 hours, so together with the last lot of HBOT, that's 40 hours in total.  The goal is to do at least 200 hours... And as I wasn't there, that's about all I can tell you.

Josh stayed with me Sunday afternoon through to Tuesday morning.  Josh is "well", though, interestingly, he seems to have a bit of a high temperature when he wakes up, and it drops quite low, often around 34.? (celcius) when he is sleeping.

We had a followup appointment with the respiratory doctor today, who provided some feedback on the recent sleep study for Josh.  Overall, his sleeping is quite good.  He does miss a couple of breaths, however has good lengthy periods of REM.  He could use CPAP whenever he sleeps, but the Doctor doesn't think Josh has to use it, and, since the decision is ours, we've decided not to use that for now.

We also will be stopping the antibiotic we've been administering via the nebuliser for a while; it was given through the neb to help keep the bug psuedomonas at bay.  We'll take a sample of Joshy's sputum next week which they'll test to see how dormant the bug is, and reassess.

I had a chuckle when the Doctor wanted to book Josh in for another sleep study, a year from now, and he asked me what night would be best!  I dont know what Im doing in the next few days sometimes, let alone in a year! :-)

Comments?

I invite anyone who reads this blog, "professionals" or laymen, to contact me direct if you have any comments, opinions or ideas regarding what you read here.

Uncle Toby's Big Splash Swimathon

The 4 kidlets and I went to Waves Leisure and Aquatic Centre this morning in support of the Swimathon that I talked about here.

It was a nice way to spend the morning; kids swimming and having fun.  We got to meet Cate Campbell (who is such a powerhouse swimmer!), and the kids received some Swimathon gear.  Melie did a few laps, and Paris did an amazing 40!

The goal was to collectively swim a total of 2009 laps in the 4 hour period, however, this was the total at 12pm!  What a great effort!

Apart from the support of a worthy cause, one of the most amazing things was the support for my Jojo.  A group of swimmers had Josh K on their bodies (see here and here).  Thank you!

This is the piece from the Hills Shire Times, and below is the article from Hills News.

  

 

Afternoon Tea

You know you have those days sometimes, when youre so busy, but at the end of the day, there's nothing much to show for it? Among other things, I was meant to meet up with some school friends for lunch, but instead, my car needed to be towed to the mechanic, and bla bla bla, there was my day gone.

This was the best thing I did all day: at Maccas, with babycinnos, cheesecakes and icecream with Kayla and Kane! Mmmm!

Kayla: poser!
Kane: what do you mean you dont drink cinnos through a straw?

Not. Swimming.

For a few weeks now Kane has resisted swimming lessons, but eventually, he swims. (Actually, even Kayla has not really wanted to go either...). But! Not today! There was just no way Kane would get in the water.


How do I explain why learning to swim is so important, without scaring him! Or should I be a bit soft, especially considering what they've been through this year? And then, conversely, its the very reason they need to swim! So, round and round it goes...

Melbourne

Josh was meant to leave for Melbourne for another round of HBOT Sunday morning, however the week before last he had high temperatures on and off, and then again on Friday, when I picked Josh up, he battled with temperatures again for the rest of the weekend except for when sleeping...

We saw our local GP yesterday to get his opinion... Josh had some bloods taken to check his white cell count etc, however since Joshy's temperature had stablised and been "normal" for 36 hours, Josh left for Melbourne early this morning anyway. I rang to get the results of the blood tests and they show that his white cell count is normal and so are the reds basically also! That just means that there is no obvious infection present just now, so treatment can go ahead for the next few days!

Big Splash!

Uncle Toby's, together with Royal Life Saving Society Australia, will be holding a national fundraising event on Sunday the 6th December to raise funds and awareness for child drownings, called the Big Splash Swimathon.

Belgravia Leisure Centre, which my kids are members of, asked me this morning to give a little speech in support of this worthy cause.

Now, for those of you who know me, I am a reserved person. I don't "talk" for the sake of talking, but if I have something to say, then I will. I do not like being the centre of attention.

I ummed and ahhed however, and then agreed...

So, at 7pm tonight, Josh was with me while I shook my way (literally; I couldn't hold the paper. A lovely lady ended up holding the sheets for me!) through the first speech Ive had to give publicly (my mum's funeral aside) since high school. It certainly was way out of my comfort zone.

But you know what? If that meant no more child drownings, then I would do it every day. (And surely in a couple of years I would no longer shake?? :-) )

Take Care

The following article appeared in today's The Daily Telegraph.

Maybe this story is about us - there are so many similarities. Or maybe it's someone elses. Perhaps its a compilation of cases attended. Either way, it does give an understanding of what Joshy went through, and it is our story. Don't let it be yours.

By Dr Steve Walker,The Daily Telegraph,November 26, 2009

A river of tears for children lost

It was another hot afternoon in Sydney. The sort of weather that we have come to associate with children drowning. They don't understand that pools are dangerous - only that they are fun and offer respite from the heat. We have been to so many drowned children the last few summers. A few of them survived, but a lot did not. They are the jobs we hate most.

Less than an hour to go until the end of the shift and it is starting to look like that will be it for the day. A case comes up on the triple-0 screens: "Toddler found unconscious in pool. Not breathing. Frothing from mouth. Father doing CPR."

The location is only a few kilometres away. As the four of us (pilot, air crewman, paramedic and myself) walk out to the helicopter, we are all thinking the same things. Not another one!

We are airborne in a couple of minutes, and the location is just a few minutes away. A few minutes to think. How long was the child missing before he was found? Don't know. How well can the father do CPR? Don't know. But these factors will largely determine whether the child will live or die.

We run up to the ambulances and then see people waving and calling out to us. Down the side of a house and into the backyard. It is always the same. A small child lying motionless in a puddle of water beside the pool. Sometimes a little girl, but more often a little boy. Not moving. Not breathing. Frantic parents crying.

The paramedics are now doing the CPR and are putting an oxygen mask on the boy. I observe white froth at the mouth, which means some water has gone down into the lungs. I kneel beside him. He is pale - almost white. And cold. Very cold.

We quickly dry the child, attach a heart monitor and stop CPR so we can see if the heart is beating. Nothing. Just a flat line.

Continue CPR. One of the paramedics carefully puts a small plastic tube down into the child's lungs so that we can administer oxygen more effectively. Not easy to do with all that froth. Nor with the distraught parents looking on. Not easy at all.

We need to get a needle into a vein so we can give some adrenaline to try to restart the heart. Another paramedic uses a cordless drill to insert a thick needle into a bone in the child's leg. From here drugs will quickly reach the heart. It looks brutal but the child is beyond feeling anything.

A dose of adrenaline and we wait for the CPR to pump it round to the heart. I notice more paramedics and police arriving. The police look young and are visibly shocked - perhaps their first drowning?

Some children are standing around. They look frightened but look too young to fully understand what is going on.

The father keeps asking what is happening and is he going to be OK? How do you say "I don't think so"?

Still a flat line on the monitor. A second dose of adrenaline and drug to try to stimulate the heart. More CPR. And we wait. I can hear the parents screaming and one of them seems to be blaming the other. I know that the guilt and blame will endure for days, months and years to come.

Still no response. A third dose of drugs and more CPR. I have never met most of the paramedics I am working with, but we are working well as a team. Everyone is operating well outside their comfort zone.

We stop CPR again. Still nothing on the monitor. How long now? Ten minutes since we arrived. Plus five minutes for us to get here. Plus however long he was in the water before he was found.

What now? We have tried everything and nothing has worked. We talk quietly among ourselves. At some point hope has to give way to futility and we are now very close to that point. How do you tell the parents that you are sorry but their boy is dead?

A fourth (and final) dose of drugs and more CPR. We wait and watch. Something shows on the monitor as the heart finally starts. Slow and erratic - please don't stop.

One of the paramedics can feel a strong pulse and other monitors tell us blood and oxygen are now flowing around his little body. But it has taken a long time for his heart to start - was it too long? Apart from a pulse, the boy shows no sign of life. We wouldn't expect anything else yet. It is far too early for him to wake up. And he possibly never will.

We transfer the boy on to a stretcher and out to the waiting ambulance. Over short distances the ambulance is faster than the helicopter. I dial the "Batphone" (an emergency phone which is always answered immediately) at The Children's Hospital at Westmead so they can prepare for us. Even through the phone I sense the thoughts of the nurse - not another drowning!

A 10-minute ride in the ambulance. The heart keeps beating strongly.Not much else to do now. I contemplate a life lost and a family in grief. Why does this keep happening over and over again?

We arrive at the hospital. Perhaps 20 staff waiting in the resuscitation room. We hand over care to them and then start packing away our gear. I notice the parents in a corner. The mother is sitting crying while the father paces around in anguish and looks like he will collapse. They face a long wait.

They are told things are very serious, but there is a chance. There are no tests that can predict the future. Only time will tell. It will probably be several days before they know whether he will live or die. And if he lives, longer still until they know whether life will be good. Will their boy still be able to walk and talk and play? One hell of a wait.

After we have finished, all the paramedics involved join us at the helicopter base behind the hospital. There is a mix of older, experienced paramedics and younger officers for whom this was their first drowning. Sadly it will not be their last. After such a case it helps if staff have an opportunity to wind down and discuss what they saw, did and felt.

They need to understand this experience will live with them for a long while to come and that it is quite normal to be affected by it.

At home that night I lay awake, replaying what happened. I hope the boy will make a miraculous recovery. I think of the parents keeping a bedside vigil throughout the days and nights ahead.

I visited the child in hospital several days later. He has lived but has brain damage.

When people hear of a child drowning, often their first thought is to blame the parents and to think that they must be irresponsible for this to have happened. Perhaps this belief is a mechanism that helps reassure parents that such a fate will never befall them. But this isn't usually the case.

I met the parents several times over the next few weeks and they seemed like good, responsible people. Dad had worked that day and had come home to look after the children so Mum could get a few hours sleep before she worked a night shift.

A normal family with both parents working and a few kids - like millions of other families around the country.

It can be difficult to supervise a family of kids - they are so quick and you can't be everywhere. This tragedy arose from a momentary oversight, not because of bad parents. It can happen so quickly.

There are always a lot of victims when a child drowns. Someone will feel responsible for years to come. Marriages will often end in divorce due to the intense guilt and blame. Siblings will miss their little brother or sister, they will struggle to understand what happened and they will wonder why family life has forever changed.

And to anyone who thinks this can't happen to them, please understand that the parents of every drowned child once believed this too.

Dr Steve Walker is a CareFlight emergency physician

Sleep!

Josh had a sleep study done Wednesday evening of the 11th... we went up to the room for him to be "wired up" at 4.30, and it took awhile to place all the monitors in the right place. This is a pic with only about half done.

The study was arranged months ago, and was meant to be done while he was an out-patient, but since the date had come around, they decided to go ahead anyway. The purpose was to monitor things like his oxygen levels, and heart rate while he was asleep. Josh had not slept properly, especially not through the night, for about 2 months, so I was interested to see what kind of results would be obtained.

Realising I was in for a long night, I took along the portable DVD player, but was told that once Josh was asleep properly, and monitoring commenced, that all devices, especially electrical, would need to be turned off. So that included the DVD player. And my phone. And the TV. Josh was in a bed with an air mattress, and on IV, and technically these both may have interfered with the reading. (As it turns out, this was indeed the case, and we may need to re-do the study soon).

As soon as Josh went to sleep, around 10pm, I figured Id try and sleep too, knowing I was in for a long night with suctioning etc. And whaddayaknow? Josh slept all night! Unfortunately, Ididn't, because there were problems with the IV and his feed and it kept beeping intermittently, and as there was no nurse actually looking after Josh, they had to call down to the ward each time, and wait for someone to come up.

Thursday afternoon, we we got the okay for Joey to go home, since his temperature had remained stable for a few days, and all else seemed fine. We didn't get home until 8.30pm though. Sigh.

But guess what? Josh has slept all night every night since!

That can only mean that he is indeed feeling "well" and the infection(s) have cleared!

He still gets ventolin and hypertonic saline through a nebuliser twice a day, but now he also receives an antibiotic this way as well.

So, while sleeping is brilliant, another important thing has taken (quite a few) steps back. Josh is still extremely stiff, and is not much fun to get in to his pram, or car seat. It makes moving him around anywhere extremely difficult, not to mention trying to put his splints on, or do any exercise or movements with him.

This pic was taken toward the end of October and shows the stiffness in Jojo's legs. We're working with the rehab team to try alleviate this...

Bugs

His chest xrays came back no worse than previous ones from the day before., but we now know that Jojo has a couple of different bugs, common to kids like him with a compromised immune system and decreased lung and respiratory function.

psuedomonas aeruginosa

haemophilus influenza (not type b)

streptococcus pyongenes and

adenovirus

Say them 5 times really fast. Okay, try just saying it once.

The first infection in particular, is one that will no doubt remain in his system now that he has it, and may or may not cause continual problems...

Also, my Jojo DID smile yesterday AND made a noise while I was talking to him, but of course, when I raced to get my phone to take a pic, he was finished.