Friday, April 27, 2012

Why It's Rude to Stare

I sat in the foyer with my children waiting for Jon to talk the young girl at the counter into letting us in for free even though we left our membership card at home.  The kids prattled excitedly about the exhibits we were going to see in the science museum and the snacks I had packed in our bag. 

A little girl, about six maybe, ran up to the pram and peered in to see the baby.

Her jaw dropped and her eyes almost bulged as she stared at the tube coming out of Kaylee's nose.

I could see this yellow tube and the white tape fixing it in place had all but eclipsed the pink cheeks, long lashes, dark hair and pink bow in her mind - she didn't notice the baby, just the tube.

Her eyes oogled at the small bundle wrapped in the pink blanket against the cold of the blustery, wet autumn day.  She followed the tube to it's source, the purple pump and the bottle hanging upside down.

There was no question asked, no comment .... just staring.

After many minutes she was called away by her family who were leaving the museum and turned, without a word.  Not even acknowledging the existence of the family and the baby behind the tube.

Later that afternoon a little boy, perhaps four, looked in the pram.  He looked at me and asked what the matter was with her nose.  I knelt down and explained that Kaylee was born a bit sick and can't eat with her mouth so she has a very special way to get her food through this tube right down into her tummy.

"Uhhuh" he said

then ran away to play on the interactive exhibit with the other kids.

And that is why I teach my children not to stare.

Thursday, April 19, 2012

The techie stuff and frequently asked questions

What is a fundoplication and why does Kaylee need it?

In the context of Kaylee, a fundoplication is a surgery to prevent reflux.  The valve where Kaylee's stomach and oesophagus join does not work very well..  Even though no food goes into Kaylee's stomach, she still almost always has gastric juices travelling up - and occasionally out - where they shouldn't.  This is called severe Gastro-Oesophageal Reflux Disease. Two things make Kaylee a candidate for this surgery.  The first is that her reflux is extreme.  The simple act of laying flat on the floor or having food in her stomach will likely cause here extreme discomfort and put her at risk of aspirating (breathing in vomit).  Vomit in the lungs is not great.   It effectively starts digesting the lungs.  A lot of it could cause pneumonia and irreversible damage to the lungs - thankfully this hasn't happened yet.  In small amounts (which Kaylee has almost certainly got happening every day) it can start to damage and break down lung tissue, raising the likelihood of lung disease and long term issues such as asthma, lung infections, pneumonia etc.  Long term reflux can also do some pretty serious damage to the oesophagus, teeth and general health and well being.  The second thing that makes Kaylee a candidate for this surgery is the fact that she has Cornelia De Lange Syndrome.  Unlike most typical babies who suffer from severe reflux, most people who have this syndrome do not grow out of their severe reflux.  Of all the issues associated with this syndrome, reflux is one of the most common and one of the most life altering of them all.  Because of her reflux Kaylee cannot do many of the things that other babies her age do (tummy time, rolling around the floor etc.).  Her reflux is also why she is fed using a naso-jejunal tube which I pretty much hate with a passion.

The surgery itself involves taking the top part of the stomach and wrapping it behind and accross in front of where the oesophagus joins the stomach and stitching it in place so the stomach effectively wraps around the oesophagus.  This closes up the opening somewhat and prevents reflux.  Kaylee should be able to have food in her stomach without fear of aspirating.  She should still be able to swallow and I believe this surgery will better her chances of learning to eat "normally".  It is a tough recovery, by all reports, and the week or so following is likely to be very un-fun however I will not be listening to her cough and wondering if she has aspirated or suctioning out her nose every ten to twenty minutes as she vomits on and off from 5am - 7am anymore.

What is a gastronomy and why does Kaylee need it?

All her life Kaylee has been fed using a feeding tube of some sort.  Currently she is fed via an NJ tube.  I go more into the details of this here, but basically it is a tube that goes through her nose, down her throat and through her stomach into her small intestines. A tube through the nose brings its own set of problems.  And it is a pretty long list actually.  Everything from the trauma of pulling tubes and having to have them reinserted (try shoving something up your nose and down your throat while you gag and vomit....Yeah, that would be one of the problems) to issues of tape irritating skin etc.  Kaylee is unlikely to start feeding orally in the very near future.  Not enough to sustain her anyway.  There are a lot of hurdles to cross before she will be taking in all her fluids, food and medication orally and there is no way to predict how long this will take or even IF she ever will take in enough food and drink through her mouth to sustain her.  So this surgery will make a hole through the wall of the tummy into the stomach which we will insert a feeding tube into.  It will sort of heal and form a hole we can put tubes in and out of the same way an ear piercing heals and earrings can be taken in and out painlessly.  It will also be used to help her "burp" if the fundoplication is too tight and she has trouble burping up air.  While a tummy tube does have its own list of issues, the list is much shorter than the list of negatives that goes with nasal tubes.  Without a tube, Kaylee would not survive.  A tummy tube has the fewest negatives and the most positives.  We are getting the tummy tube.  A nice added side bonus is the fact that Kaylee will no longer have anything taped to her face and we will be able to fly under the radar a little more and I will be able to kiss both those chubby cheeks without fear of dislodging anything.

When will it happen?
Whenever we get her healthy from this cold and they have a gap in the surgery schedule.  We are thinking a couple of weeks at this stage

What are you going to do in the meantime?
We are currently staying with friends in the Melbourne area.  While I have no desire whatsoever to move permanently away from Tassie,  it is a good feeling to be so close to one of the top paediatric hospitals in the world at the moment.  Staying here with our friends has also been a time of rest and healing for us.  Simply knowing that if we need to take Kaylee to hospital, there is someone RIGHT HERE to watch the others is a great weight off our shoulders.  Bek and Shane have been our friends so long they are family and we have been blessed SO much by their hospitality.  We are re-evaluating as we go and after the tummy surgery is done we will make a decision about having the cleft surgery done here or going home to Tassie for that one.  We are taking advantage of the zoos, museums etc. while we are here (when the kids are up to it!) and having a bit of a holiday in between surgeries.  The kids have their school work with them and we believe it is better for them to be settled and all of us to be near each other than to pack all of us around to the different hospitals or have Kaylee and I leave for days and weeks at a time at random intervals.  Home really is where the herd is!

Friday, April 06, 2012

The next step

Over the last fortnight, I have unpacked our friends house.

When we came to stay they had been here only a short time so there were boxes everywhere.  I threw myself in with abandon.  Every box has been opened, every book shelved, every ornament dusted and a place found for it, every item of Tupperware paired with its lid.  I ran out of shelf space for the books so bought myself a bookshelf for my birthday so I could keep going.

As I sit here I have an immense sense of satisfaction.

I never used to be like this.

I never used to clean when stressed.

But somewhere along the way I started cleaning parent rooms in the hospital at midnight.

I think it's because I feel like I am falling.

I like control.

I like being able to predict what will happen next.

I like knowing my options and choosing what to do next.

I sorta, kinda, little bit know what is going to happen next in the same way that a skydiver knows that the ground will be intimately involved in what happens way or another.

Kaylee's general surgery review will be on the 11th of this month.  At this appointment, I will find out if Kaylee's tummy surgery will  go ahead and what timeline we will be looking at.  But with these answers, as with most answers I get these days, come a million more questions.  Will we stay here with our friends close to the hospital until Kaylee's surgery or go home to Tassie?  What button (the type of feed tube placed through Kaylee's tummy) options do we have down the track and how/when/where will we be dealing with changes to the type of button?  There are several ways the fundoplication (part of the surgery where they wrap some of the stomach around the bottom of the oesophagus to close it off a bit) can go wrong, how will we deal with it if some of the more common complications occur?  How long are we likely to need to stay around Victoria?   Who will be our go-to person for tube management once we leave the hospital?  What about when we go home to Tassie?  What will we be doing about her feeding orally and when?  Who will be involved in those types of decisions long term?  When/where/under what circumstances will we have her fundo assessed down the road?

And on and on and on and on....

And like a cartoon coyote putting up an umbrella while plummeting off a cliff, I shelve books to carve some sort of order out of the chaos that my life has become.

Early in the morning, I go for a walk by the bay.

To exercise, to get a few moments of solitude before plunging into life in a household of 14 (4 adults, 10 kids under 8 - sometimes we feel a little outnumbered), sometimes to cry and always, always to pray.

The other morning I was so tired I could hardly move but I walked by the bay and watched the sun come up, the birds wake up and start their day and the earth take a deep breath to start the day.  I sat on an old concrete cylinder in the sand among the grasses and succulents, my whole body drooping with weariness and I cried.

I told God that I do NOT want to know if this surgery will be the answer we are looking for.  I don't want to know if Kaylee will walk, talk, live independently.  I do not want to know if my other kids will handle their sister's disability with grace.  I do not want to know how my marriage will weather this storm.  I don't want to know about medical staff, therapies, where we are going to live, what we are going to do.  I don't want to know any of it.  The knowledge I have is already far too heavy for me to carry.  I want to skip all of it anyway.

All I want to know, all I want to see, is my family in heaven.

Kaylee chowing down on the fruit of life before running by the river with her brothers and sisters.

Watching them with my husband.

All the crap, vomit, blood, pain, heartbreak.........gone.

I want to skip to the end.

I looked down and saw hundreds of small shells.

I thought absently that I should gather some up to teach the kids about the Fibonacci sequence.

I don't even know what numbers are involved in the Fibonacci sequence.

And God said "I do"


"You don't always know the math of what I do.  You don't always understand where I am going.  You don't know the end result.  But I got your back.  Like the snail that never sees its own shell and the butterfly never sees the beauty of its wings - you don't see the pattern I am making in your life right now.  But trust me, the math works out.  And one day there will be no more crap, sweat, blood, tears, pain, therapy, doctors, red tape, vomit, needles, drugs... one day it will be beautiful."

"You are tired?  Rest in me.  Is your load heavy?  Give it to me.  Are you worried?  Trust me."

So I will keep doing what I can about the things I can do something about.

I will keep moving forward.

I will take the next step, even when it involves stepping off a cliff.

And I will leave the math up to God.

(by the way, I looked it up.  The Fibonacci sequence 1, 1, 2, 3, 5, 8, 13… Each number is the previous two added up. The ratio of two consecutive numbers approaches 1.6180…, or (1+Sqrt(5))/2, which is called the Golden Ratio.  It's brilliant)