Thursday, 15 October 2015

Surgery is on!

It has been "on again - off again" for almost a year now, but we have been given a new date for Albert's long awaited surgery. The operation is to repair the part of his throat that controls swallowing in the hope that he may be able to eat. For most of his life Albert has been feed through various kinds of tubes, and for the last year through a tube which feeds directly to his stomach via a hole surgically made between his stomach and a valve which sticks out of the skin on his tummy.

The date for his operation is 3rd of December. This date could be changed, as it has several times this year, by two main factors. If Albert gets sick, and if there are no spare beds in the Intensive Care Unit of the children's hospital at the time.

This post is to keep anyone following Albert's progress up to date and to ask for your prayers that a) Albert remains in good health for surgery and b) that other children are also spared serious injury or ill health, leaving plenty of room in ICU for children such as Albert to receive important medical treatment.

We remain profoundly grateful for all your love and support, particularly in prayer.

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.