Saturday, 25 July 2015

Holding that thought (2)

This month has not been ideal in many ways. We were finally told that Albert had been given a new date for surgery (the third time now), next Friday. Unfortunately we already had the lad at the doctor earlier that day for a fever and cough. After months of being as healthy as he has ever been, Albert has another throat infection. If you could spare a prayer for him, he is struggling with fever and a nasty cough at present.

On a previous occasion the surgeon indicated he will not operate if Albert has been on antibiotics within a month of the the operation. It seems we are likely to be placed back on the 4-8 week waiting list again. That fact alone is emotionally draining, but it is not the only problem. Albert's antibiotics have stirred up things inside, resulting in such a severe bum rash that he is extremely uncomfortable. His bum hurts, so he cries, which hurts his throat, so he cries and wriggles, which hurts his bum, which ... you get the picture.

Albert is not the only one with the bug, and I was interstate all week visiting an ailing relative, so poor Susan has had little sleep between all the sick children. Susan has her own operation scheduled for Monday. Her eye surgery is a day procedure, so she will not be away from home long, but it will be at least a week of recovery at home before she is fit to drive or operate machinery. Concern about the operation, combined with tiredness and disappointment at yet another delay for Albert, have left her feeling and exhausted and emotionally wrung out.

Lectures for Semester Two begin on Monday, further complicating things, but I am fortunate to be able to work flexibly in times such as this.

Please pray for Albert, for Susie and for the health professionals involved this week.

Thursday, 9 July 2015

Wells on Marriage

I was reading a biography of H.G. Wells today (for research purposes) and came across this quote

Socialism, if it is anything more than a petty tinkering with economic relationships is a renucleation of society. The family can remain only as a biological fact. Its economic and educational autonomy are inevitably doomed. The modern state is bound to be the ultimate guardian of all children and it must assist, replace, or subordinate the parent as supporter, guardian and educator; it must release all human beings from the obligation of mutual proprietorship, and it must refuse absolutely to recognize or enforce any kind of sexual ownership. It cannot therefore remain neutral when such claims come before it. It must disallow them.
       - H. G. Wells, An Experiment in Autobiography: Discoveriesand Conclusions of a Very Ordinary Brain
This quote is within a larger discussion, in which he observes that many of the people pushing for particular social outcomes rarely admit the logical conclusions and natural results of of the changes they propose. The end result of social changes are rarely admitted by those who propose them, either because they do not realise where their changes will lead, or they do know and do not want to admit the consequences in case it undermine popular support for the immediate goals,

How is this relevant today? The change proposed above is the liberation from social institutions such as marriage. The author simply points out the logical and natural conclusion of the premise (that marriage need not be bound to one man/one woman, for life) is that mere freedom from such marriage is not enough. Any state which accepts the premise (that marriage need not be binding) must also disallow all citizens from proposing or acting on it.

Thursday, 2 July 2015

Hold that thought...

As you may be aware, Albert was scheduled for throat surgery tomorrow morning. The surgeon called this morning to let us know that there are not enough beds in ICU at present to receive Albert after the operation, so his operation has been postponed, 

We have no indication of when the operation will be scheduled. Given that I am flying North to visit my Father in a few weeks, Susie has an operation of her own (and recovery) scheduled and then I am flying South to address a conference, any time in the next six weeks is likely to make a mess of our plans.

It is a small thing, a first world problem in fact. We are blessed to have such a wonderful health care system to wait for. Please God help us not to resent the disruption and the wait. 

Wednesday, 24 June 2015

Surgery Booked (round two).

I am delighted to say that Albert has been very well lately. We made a few big changes to our family routine in the last few months and one of the benefits has been that Albert has not fallen ill at all. In fact he is presently in the longest period without illness since his birth!

Under the direction of our various health support specialists, Albert has been set up with leg braces and a contraption to help him stand. The idea is that, not only will he develop his balance and sense of the world in an upright position, his hips will develop normally with at least some weight bearing pressure each day. Albert has developed the usual toddler tendency to grab and throw things, and to grab any stray hairs, particularly beards, much to the amusement of most of the household!

Adding to the good news, our little champ has now reached 10.5kgs, continuing his excellent run this year.

The main news today is that we have been given a new date for Albert's throat surgery. It seems he will go under the knife on the 3rd of July. That is, next Friday. 

This is a serious operation, but one which we hope will significantly improve Albert's quality of life.

Your prayers for the surgeon and for Albert would be very much appreciated.

Wednesday, 27 May 2015

More surgery coming

You may recall that Albert was scheduled for delicate throat surgery last month, and that his surgery was postponed when he contracted a serious throat infection.

Albert has been through a full course of antibiotics, then a second course of stronger antibiotics, without seeing an end to his infection. Since Albert is physically stronger (and heavier) that he has ever been before, this probably means it is a viral infection which he will just have to beat naturally. Even though he is visibly struggling with copious quantities of bodily fluids interfering with his breathing, he remains cheerful and responsive to his siblings and parents. He has the sympathy of his siblings, but perhaps not enough to stop them referring to him as the "snot-monster" and "mucus-man", much to Dad's dismay.

Albert attended an appointment with the respiratory specialists today and we have some updated plans. The short version is that Albert needs a new machine, called a nebuliser, (a couple of hundred dollars worth of new equipment and supplies) to disperse a form of salty mist which he is forced to breathe through a mask (not the same mask he uses with CPAP when he sleeps). He was quite calm during the demonstration today. I guess they can't do much to him that he hasn't already seen. Who knows how it will work out on a daily basis? To be honest I could put up with any amount of fuss if it resulted in more than four hours sleep at a time.

The specialist also told us today that Albert's tonsils and adenoid glands have grown significantly larger. Large enough, in fact, to impinge upon his ability to breathe freely. This is not an unusual problem with Trisomy 21 children. The usual solution is to have them all removed as soon as possible. The specialist will ask the throat surgeon to include the removal of tonsils and adenoids in the (delayed) throat operation. So the operation which was already a big deal, is now an even bigger deal.

Please join us in praying that Albert recovers quickly from his infection, especially that it does not spread to his lungs, and that his operation is safe and successful.

Wednesday, 22 April 2015

Surgery Postponed

Albert has a bad head cold, and it seems to have developed into quite a nasty throat infection, which is affecting his sleep and, by extension, ours.

This means, of course that the surgeon has postponed his surgery until he is fully recovered.

He said that the operation is of such a delicate nature that he will not operate within 4 weeks of Albert being this sick, especially in the very area the operation will focus on.

While the delay is unfortunate, it is wise and necessary.

Thank you once again for your prayers. We will keep you updated as things develop.

Sunday, 19 April 2015

Albert v The Knife (Round Three)

EDIT: See the next post for an update.*

It has been a long time, it seems, since I begged for your prayers for Albert. I have left this blog alone as we struggled through lack of sleep, various fevers colds, gastro and all the little things that affect every family, but which seem just a little bit harder with our boy.

Albert is progressing well. After months of tweaking the balance and nutritional content of his formula he has finally hit a purple patch and is putting on weight! He looks much stronger and healthier in the last month than he has ever looked.

And we now have a date for the big operation. This one is the last major operation on his list, and the one that could pave the way back to a near normal life (eventually). I posted the reasoning behind the operation back in February. The original plan was a temporary, but less intrusive, operation as a sort of test run for the more dangerous operation which affects permanent repair. More recent testing, along with revision of previous testing, has led the specialists to the conclusion that Albert should will require the full surgical repair as soon as possible.

This is a good development. The best case scenario could see Albert able to swallow and breathe unaided within 12 months, removing the last two serious health concerns we have. To give you an idea how much things will change, here are some practical changes we can hope for.

1. Albert is fed via a tube in his stomach every 4 hours. It is relatively easy to do, but it takes training and experience to manage safely, and it often involves being skilled enough to fend off four nimble limbs trying to grab tubes and bottles while carefully pouring exact amounts, and regulating the flow of formula precisely. Each feed takes about 30-40 minutes of concentration. While we have shared the load around the family, everyone takes at least one turn each day, and the late night ones are difficult to manage on little sleep.

2. Albert needs to be on CPAP (a breathing mask) whenever he sleeps. That means he cannot leave the house for longer than three hours without making him very tired. It is hard to describe how much it changes your life to have a mental timer start every time we leave the house and feel it ticking down as we try to get things done as soon as possible.

Needless to say, being able to leave the house without being conscious of the timer counting down and to be able to start teaching Albert to eat for himself, will be a huge change to his care.

That is the best case scenario. The operation is in such a dangerous area, the throat, the operation itself carries a greater risk, and success is not guaranteed. Even if the operation goes smoothly it may be that only a percentage of functionality is restored, which may help his breathing but perhaps not his swallowing. At present almost all the liquid he swallows goes straight into his lungs. Even if the repairs mean only 20% of liquid goes into his lungs, we would not be able to feed him that way. We need it to work all the way!

No matter what the result, Albert will be chemically paralysed and in an induced coma for a few days after the operation, so that his throat has time to heal the cuts, and then he will be in a recovery ward for a week or so.

The operation is scheduled for the 29th of this month (April), a week from Wednesday, and he begins all the preliminary specialist appointments this week.

So, dear friends, I beg you for prayers once again. Please pray for the surgeons, for their work on Albert, that the operation is successful, and that Albert is restored to us for a new chapter in his life! Pray also for Susie who will likely bear the brunt of the hospital bedside watch.