Thursday, 15 January 2015

Bravery?

Fred Nile has created something of a storm by suggesting that the hostages of the gun wielding nutcase in Sydney last December do not all deserve awards for bravery.

Fred has a habit of oversimplifying complex situations, or perhaps the media merely misrepresent him in this manner, but I want to pick out one point he made.

We do not know what the hostages endured in that horrible situation, nor can we accurately assess how realistic a chance they had to act against the cowardly gunman. I don't want to play down the horror all of them endured that day. I am sure that there were some brave actions by individuals in the siege which deserve awards, but let us reward that bravery specifically rather than equate it to simply being in the same place as everyone else.

I agree with Fred Nile on this particular point. I agree that handing all the people in that place an award for 'bravery' for simply being there would cheapen the meaning of bravery. Bravery is not merely surviving a situation. A bravery award usually recognises that an individual has knowingly placed themselves at risk of serious harm in order to save other individuals from serious harm.

A man who took the first opportunity to run for his life, leaving all the others at risk of the gunman's rage, does not seem to meet this description.

Please note, I am not suggesting I would be any better. I certainly hope I would be brave enough, but bravery is easy to talk about sitting safely behind a keyboard. Until I am in such a situation, I will never know how brave I really am. But I can say this; if my courage does fail me and I flee at the first opportunity, I certainly hope nobody hands me an award and calls it 'bravery'.

Courage is not the absence of fear, but the judgement that something is worth risking, or even giving up, my life for. The brave may not live forever, but he has found something worth living for, and dying for.

Saturday, 10 January 2015

Albert resists

Albert moves at Albert's pace. This is a lesson we keep learning.

The stomach peg has been a good thing for Albert's general development. His face is no longer covered by taping and tubes, his  hands are no longer covered in socks and prevented from grasping at those tubes. Since he came out of his latest surgery he has impressed us all with his range of expression, his responsiveness to faces and voices, and his progress in grasping things around him manually. He continues to display remarkable dexterity in his legs and feet, interfering with his feeding apparatus with remarkable speed and accuracy on a regular basis, much to the frustration of his parents and siblings!

We were very blessed to be able to take Albert away on our family holiday this year, where he was stimulated by double the usual number of children clamouring for his attention.

Unfortunately the gastric peg has not been all plain sailing. The wound itself has developed granulation. I will tell you that this is a build up on fleshy material around the outside of the wound, so that you do are not tempted to Google 'granulation' and spoil your next meal. While not ideal, granulation is a relatively common occurrence in wounds of this sort and his parents have learnt yet another new skill set in caring for Albert. Still less fortunate is the fact that the wound has developed a staph infection (no, not golden staph) and thus has added antibiotics to his daily intake. This has been complicated slightly by test results which show that Albert is resistant to Penicillin and Amoxicillin (another common antibiotic). We seem to have found an antibiotic that works now.

We are hopeful that 2015 will bring continued improvement, at Albert's pace, and that we can get a few other things done too. :)


Thursday, 11 December 2014

Poor in Relationships

ONE of the key stories on which Australians base our national identity is that of the convict who was desperately poor, stole a loaf of bread and ended up slaving his life away in a new British colony on the other side of the world. None of us condone stealing bread, but we feel compassion for the unjust situation that convict finds himself in.

Now if we were living in London at the time and happened to read a newspaper story from that time suggesting that the solution to the high rate of bread theft in London was to punish the offenders with a life of hard labour in hellish conditions, we might ask if there are better solutions available. 

Centuries of hard experience have taught us that clothing, feeding and educating that man, and providing the opportunity to work for his bread, not only reduces bread theft, it clearly pays big dividends for society in the long run. Scowling at a homeless and desperate poor man and telling him to get a job is hardly helpful. Neither is disproportionately increasing the legal penalties for his misplaced attempts to get by.

While considering some of the problems with family and relationships which are common in our Western society, it struck me that we may be facing a similar problem, and that some of our present solutions may be just as unhelpful and uncharitable as those used in London all those years ago. If a man is hungry and he can see no legal means to fill his need, he will become desperate and likely commit a crime.

The Church teaches that it is not enough to merely provide some bread to help a poor man survive through the day. The aim of charity is to help him find a dignified way out of his desperate predicament so that he can eat bread every day with dignity and joy. So far so good, but there are more needs than hunger for bread. Human beings need relationships. Real, lasting and fulfilling friendships and especially marriages and families.

 There are many studies that clearly show that our ability to form and keep healthy relationships are heavily influenced by the relationships into which we were born, and the way we were treated growing up. If someone has grown up with a poor experience of relationships they will find it far more difficult to form healthy relationships of their own. Being raised in a broken family, or with one parent absent is a factor influencing relationships.

That is not to say that someone raised in a broken family is doomed to fail in relationships. There are many people who have forged great relationships and have admirable families. The statistics tell us, however, that a history of broken families tends to make life much more difficult for some people. What if a person has been raised in a love poor family? What if, in spite of their family’s wealth, a child was starved of attention, love and affection by parents who were too busy, or who had a similarly impoverished upbringing themselves and don’t know how to change that? What if a person were loved poorly and felt driven to desperate measures to obtain the attention and affirmation they keenly lack?

Any counsellor or pastor will tell you that a desperately low self-esteem can be behind a great deal of self-destructive behaviour. How many men and women post carefully posed pictures on social media, involving clothes and/or poses that would not be fit for a public place, yet are on display for the entire Internet? How many young men and women commit crazy acts, sacrificing their own dignity and worth in a desperate bid for attention, acceptance and affection?

Yet perhaps the answer is not to condemn the selfies or punish the promiscuous behaviour. As in the case of the poor convict who stole the loaf of bread, we can see the desperation driving the behaviour.

Without condoning or encouraging such things, we can feel compassion for the circumstances that drive these people to such desperation. If we are truly Christian, then we should not resort to scolding people for trying to find what they need in all the wrong places. Rather, we should first seek to show them the right places to look for loving attention, genuine acceptance and love.

People make bad decisions because they think it is the best option available for them. The way to help them make better decisions is to show them that there are better options. That begins by giving them attention and treating them with genuine Christian affection and affirmation.

Only Christ can supply what they hunger for.

(Published by the Catholic Leader, November 25, 2014)

Tuesday, 9 December 2014

Home again!

Albert is home. We now begin the task of learning his new feeding routine, mapping out a plan for his swallowing lessons, and all the grabbing lessons we have been holding off, and figuring out some way for one person to feed him and keep his very active hands and feet away from the tubes. 

Albert will be back at the hospital in two days to have his external stitches out, (his internal stitches will eventually dissolve), and he is already on the waiting list for at least three more surgical procedures, possibly four. We have set the wheels in motion to arrange these operations to happen in twos, so Albert only has to go under a General anesthetic and recovery twice more. The hospital are keen to go along with this plan since it saves them a great deal of time and money in the long run. 

For now, Albert is home. There is not much more to say today. That is what matters.

Monday, 8 December 2014

The Road to Recovery

Albert remains true to form. All three aspects of his surgical adventure last week have been deemed successful by the various medical specialists involved. Albert's recovery time, however, has been longer than expected. He seems to do everything on Albert time, which is about as punctual as a teenage boy in the shower!

The exploratory probes that went down his throat as far as his stomach and lungs, (a Laryngo Broncho Esophegoscopy and a Nasoendoscopy), found what may be a problem in Albert's esophagus. The ear Nose & Throat specialists have reported "a partition problem" which may be contributing to Albert's swallowing difficulties. I am no specialist but it seems that this problem is located in the pharyngeal stage (the swallowing process) since it involves the partition between the windpipe and the gullet (trachea and esophagus). We are waiting on more information.

The problem is that a high percentage of people with Trisomy 21 experience some degree of difficulty in swallowing, largely due to poor muscle tone. This makes it difficult for the specialists to accurately predict the degree of improvement a particular surgical intervention can be expected to achieve. In simple terms, the doctors cannot guarantee that fixing the problem they have spotted will make much difference to Albert's ability to swallow. Hence they are reluctant to attempt major surgery on Albert's throat without further confirmation that the risk is worth it. The plan, at this early stage, seems to be a minor procedure where the surgeons will inject a small amount of fluid, temporarily fixing the problem they have found. This injection will only affect Albert for a few weeks, but it will give us a clearer indication of how much this specific problem is affecting his swallowing. If, after this simple and relatively safe procedure, the barium swallow texts show that Albert's ability to swallow has significantly improved, we will consider a more permanent surgical solution.

The good news is that it seems that the majority of Albert's problems are related to this swallowing problem. It seems very likely that his episodes with pneumonia and other respiratory infections were caused by silent aspiration (the liquids going down his throat going straight into his lungs, and his coughing reflex not operating properly to warn us or expel the the liquids.) If we get this sorted out, the future looks far brighter.

The feeding tube placed in his stomach is working as planned. The only problem so far is that Albert, not unlike other babies, loves to bounce around and pull at anything his hands find to grip. It is very difficult, with only two hands, to restrain both of his hands, convince him to remain relatively still, and operate the feeding tube. We are working on solutions.

Unfortunately this delay has meant that we had to postpone our anniversary celebrations for a week. Please continue to pray for Albert, and for Susan, who is struggling with a lack of sleep and a great deal of boredom as we wait for Albert to recover sufficiently to be discharged.

Thursday, 4 December 2014

Round Two to Albert

First things first, Albert is recovering well in a hospital ward this evening.

He was admitted to day surgery about midday today and, after a briefing from three separate medical staff and the signing of consent forms, was carried away from us about 1:15pm. The procedures were fairly straightforward but, because there were two separate procedures scheduled, there were two full medical teams to coordinate, which takes time.

So what happened to Albert today? In technical terms he had a Laryngo Broncho Esophegoscopy, a Nasoendoscopy and a Laparoscopic Gostrostomy. This means that, once Albert was sedated, the ear, nose and throat specialist team sent a tube down his throat to discover if there are any issues with the tubes that Albert uses for breathing and eating which may be causing his swallowing problems. When the ear, nose and throat team removed the camera tube and cleared away, the surgeon moved in and put his own tubes down Albert's throat which assisted in locating the best place to place a gastric tube. The end result is that Albert now has a tube directly from his stomach to a valve/peg on his side. We will be feeding him through this valve from now on.

The operation was smooth and (so far) seems successful, so the doctors did not put Albert in the intensive care unit as planned, but moved him directly from the recovery ward to his regular ward. In fact he has been moved back into the exact location he started in so many months ago! Three of the nurses from that ward (where we spent a couple of months after his heart surgery) were delighted to see Albert again and spent some time playing with him and competing to see who could get him to smile most.

Albert himself seems delighted with all the attention. He is very alert and interested in his surroundings, if a little tired. The foot probe the nurses place on his foot to monitor his blood oxygen level emits a strong red glow, so he has been waving that foot above his head, watching the light move about. I suspect his parents and the staff will have their hands full keeping him distracted over the next few days.

Albert will be in hospital under observation for at least the next couple of days.

Thank you for all your prayers and well wishes! We will be begging for them again next year when Albert returns to the surgery for round three! (More on this to follow.)

Wednesday, 3 December 2014

Albert v The Knife (Round Two)

As many of you already know, we have been waiting for some time for Albert to be given a stomach

tube for feeding. A few days ago we had a call from the surgeon, and Susan has taken Albert to the hospital today for pre-surgery appointments. All things going according to plan, Albert will go under general anesthetist tomorrow, (Thursday), and will have a gastric feeding tube put in place. Although this operation is fairly straightforward, and is considered 'safe' by the surgeon's standards, anything that involves a general anesthetic, cutting a hole in Albert's side and in his stomach and placing a permanent tube there, still carries the usual risks. On the one hand, Albert has a history of serious cardiac and respiratory problems. On the other hand, Albert has survived open heart surgery and two bouts of pneumonia, so this should be a cake walk!

Albert will need to remain in hospital for his recovery and will be under observation until the surgeon is satisfied he is well on the mend. He expects Albert will be released in 3-5 days. 

Even though we have been through all this before, even though the car could probably find its own way to the children's hospital by now, even though Albert has survived much much more dangerous situations and even though we have wanted and waited for this operation for months... we will still be nervous as we walk him in tomorrow. The very familiar corridors, the distinctive sound of the peculiar architecture of the hospital foyer, the unmistakable smell of alcoholic hand wash all take us back to the vivid and painful memories of weeks and months spent anxiously in those haunts.

Hopefully, God willing, this stay will be short and sweet. Please join us in praying for Albert's swift recovery. Particularly that we are home and safely in routine by Tuesday evening, so that Susan and I can slip out to celebrate our twentieth Wedding anniversary on Wednesday! 

The incredibly young and naive young people huddled against the cold in this picture were just dating at the time. They had no idea that they would be celebrating their twentieth wedding anniversary under such circumstances.