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.

Sunday, 22 March 2015

Having done it Rite...

A quick happy update. Today the majority of us had recovered sufficiently from gastro, and we made it to the Sydney Cathedral (leaving two behind) so that Albert could finally have his rite of Baptism completed.

Archbishop Anthony was in fine form and delivered a classic Dominican homily, in which he managed to speak about Ambrose, Augustine, Jordan of Saxony, Albert the Great, and (of course) St Thomas Aquinas.

It was great to have his mother and godmother present this time :) and it was a very special moment for the three men who were present for the emergency baptism to finally see it through to completion!

Thank you all for your continued prayers.

Wednesday, 18 March 2015

Getting it Rite

Just over one year ago, after a long and difficult labour, Susan gave birth to our son Albert. He was almost immediately rushed to an Intensive Care Unit in a children's hospital. I asked the doctors if I could wait for a day or so before having him baptised, but they advised us to organise the baptism as soon as possible. We called two dear friends, one a priest and the other one of the people we had asked to be godparents, and they responded so swiftly that they reached Albert's ward before I did!

With the permission of the (then) bishop of Parramatta, Albert William Holmes was received into the Church by emergency baptism. (picture)

In cases of emergency baptism, the practice is to complete the rite of baptism within a Church setting when that becomes possible.* For various reasons, mostly relating to Albert's health, but partially relating to bishops moving around, it has been difficult to find a suitable date to complete Albert's baptismal rite.

I am delighted to say that we have finally found a suitable time and date.

At 3:00PM this coming Sunday, the 22nd of March, Archbishop Anthony Fisher will conduct the completion of the rite of Baptism which was begun, with his permission, by Fr Sam Lynch.

If you happen to be at the Cathedral on Sunday you are quite welcome, but not obliged, to join us in this short but joyful occasion.

NB: Due to Albert's delicate health there will be no formal celebration after the rite, we will be heading home to give Albert a well earned rest!

Wherever you are on Sunday, please pray with us, and rejoice with us!

(*The baptism is valid as soon as happens. If nothing else happened it would still be valid. It is Catholic practice, however, to 'complete' any part of the extended rite which was not able to performed due to the circumstances surrounding the emergency baptism. The priest completing the rite would note the place of emergency baptism and record the baptism as 'rite supplied'. This demonstrates publicly that the emergency baptism was not separated from the Church but united with her, and the Church receives and welcomes the child as one of her own. In Albert's case he had been baptised with water a year ago but, since he was in danger of death and had many tubes and cords obstructing access to his winy body, almost nothing else was possible. He will receive the anointing, blessings, readings and homily, and his parents receive blessings for motherhood and fatherhood respectively.)

Monday, 16 March 2015

Albert beefs up!

It has been some time since an Albert update I am sorry. This is not because nothing has been happening. It has partly because I have been very busy, but mostly because we are all simply exhausted and I find it difficult to muster the energy to write.

Albert survived a gastro flu that brought about half the household to its knees last week, and he survived a vicious fever that blasted him to 40 degrees Celsius (104F for our American friends) even after five days of antibiotics. Some strong antibiotics and pain killers helped bring down the fever and he seems almost back to normal now, though he still has an infected throat and cries when he coughs. He is understandably tired.

I am writing now to share some excellent news. First, Albert successfully completed his second sleep study and we are waiting on the results. If anyone has seen how many sensors are plastered to the poor child's head you will know that just getting through that night without major drama is quite an achievement!

Second, Albert has had his eyes checked this week. The medical specialists usually recommend yearly checks to keep track of problems that often arise in T21 children, but they warned us he may require more frequent testing if they detect certain problems. After the tests, however, Albert's specialist told us that his eyes were so good that he won't need to see us for another TWO years. Needless to say, Albert was treated to a few high fives.

Third, you may recall that Albert has struggled to put on weight for the last six months or so. We have been juggling his formula, trying different combinations and amounts, and trying to balance volume with his stomach capacity to avoid excessive vomiting. To be honest the constant trial and error was beginning to depress us. Nothing seemed to be working at all. He was 7.00kg in October last year, and by the 12th of February this year (four months later) had only gained half a kilo to 7.52 kg. Today, however, he weighed in at 8.52kg!

We are still not out of the woods. The constant grind of his health care, combined with a large family, a full time job and a PhD on the side, is exhausting all round. We are still waiting for a date for his next serious surgery (on his throat), but for now that can all wait.

Rejoice with us! Albert is growing again.

Monday, 2 March 2015

The Cheese List

My wife came home with some Wensleydale cheese recently, and I remarked that I remembered the name from The Cheese Shop skit by Monty Python. While discussing the list, we wondered how many of the cheeses we had tasted. One thing led to another and we have now decided we will try to taste every cheese on the list!  

It is, perhaps, a silly goal. But, hey, we don't get out much these days and everybody needs a hobby. :)

For those who have not seen the skit, here it is.

And the list:

Red Leicester 
Bel Paese
Red Windsor
Norweigan Jarlsburg 
White Stilton 
Danish Blue
Double Goucester 
Dorset Blue Vinny
Pont l'eVeque
Port Salut
Saint Paulin
Carre de l'Est
Bresse Bleu
Perle de Champagne
Smoked Austrian
Sage Derby
(Greek Feta) 
Pipo Creme
Danish Fynbo
Czechoslovakian Sheep's Milk
Venezuelan Beaver Cheese

And getting us started right away, some Wensleydale, (pictured above), and some Shrophsire Blue for good measure!