Friday, March 30, 2012

Postcard from Melbourne

I have so much to say but not much time to write now-days so take this as a postcard (without the picture) and a promise of more later.

We are currently staying with friends who recently moved to a much larger house than they are used to so in spite of the fact that we have ten children under eight between us, we all seem to be co-habiting pretty well.

Kaylee has stayed out of hospital since that last "vomiting green" emergency trip.  Her cardiologist is very pleased with her and we won't have to have another cardio assessment for six months, and then it will probably be in Tassie.  She will need another surgery to deal with her leaky pulmonary valve and artery but we are hoping that won't be until she is grown and can have the adult solution rather than a temporary kid fix.

Kaylee will have a general surgery review for her tummy surgery on April 11 and we will then know what type of surgeries she will need (we have a fair idea now, we just need the official stamp) and we will be able to talk about dates. 

We are planning to stay in Melbourne until after the gen. surg. review on April 11 - but if you are planning to rob our house you should know we have a very vicious cat who is being fed regularly by the armed guard who patrols our property.

Erin's croup is continuing to improve and the only trace left is a bit of a husky voice.

Andrew had a quick trip to emergency for steroids due to croup Wednesday night but seems OK now although extremely clingy and whingy - which is to be expected.

Billy spent 36 hours vomiting with a fever starting Monday but is OK now and by some miracle nobody else got it in spite of 5 kids sleeping in the same room, many of them sharing beds.

So far the kids belonging to the family we are staying with seem in good health - again, a miracle!

My lovely friends at the hospital have wrangled the system to get us a decent feed pump to use while we are in Melbourne and by the time we get back to Tassie the new tender should be in force and we should have a decent one there too.

Once the kids are healthy and rested we are hoping to do a bit of sight seeing and tourist-y stuff but right now we are powering down and re-connecting as a family.

The weather is......Melbourne weather.

Glad to be not in hospital.

Wish you actually, we are enjoying a bit of space right now.

Will rejoin society at some point.


Saturday, March 24, 2012


It is past midnight.

I am waiting for Erin to go to sleep.

She is having trouble going to sleep because of all the noise at the nurses station outside her door.

We have been admitted to emergency overnight for her croup.

Kaylee got discharged last Tuesday and for one reason or another I have spent the majority of my waking hours at the hospital ever since - with Kaylee vomiting odd substances, tubie stuff and what-not and today Erin waking up with an inflamed throat stopping her from breathing properly (croup).

Tonight I haven't showered for about three days, I am knackered beyond all belief and I highly doubt I will get any sleep tonight.

A friend from the cardio ward died this week and I missed the memorial because I was too busy here at the hospital sorting out "hospital" stuff.

Packing up our stuff and preparing to leave has been thrown entirely onto Jon's shoulders as he wrangles children in the communal living setting of Ronald McDonald House.

I have fought, grieved and struggled with gritted teeth this week.

It has, by many measures, been a crappy week.

But a friend of mine brought her daughter - who she had fought to keep alive for over a decade and a half - into this emergency ward this week.  And she never got to take her home again.

Tomorrow my daughters will get in the car and we will drive away from here.

Friday, March 23, 2012

A tale of tubes and tanties

There are two basic feeding tubes that go through the nose.

One is an NG tube which passes through the nose into the stomach.  This is the most common and is used often to help people who for some reason cannot or will not eat enough food to sustain them i.e. premature babies, people who are having trouble swallowing for whatever reason.  Usually it is inserted through the nose into the stomach then the carer draws up fluids using a syringe and checks with litmus paper to see that what was drawn up is acidic, making sure that the tube is sitting correctly in the stomach rather than the lungs then you're good to go.  It is not that hard to do and a "lay person" can be trained to do this at home.

The other tube is an NJ tube.  This tube passes through the nose, into the stomach but keeps going through the pyloric sphincter (the valve between the stomach and the intestine) into the small intestine.  It then has to go past the first part of the small intestine (called the duodenum) and sits in the next part of the small intestine called the jejunum - hence the J in NJ.  This is usually inserted with access to an x-ray so it can be determined that it is sitting in the exact right place.  Do not try this at home kids.

Kaylee has the second of these two tubes.

This is not a fact that I relish.

I did not just knock on every door to make sure this was our only healthy option for Kaylee after this admission, I BANGED on every door.  In fact, I stalked a gastroenterologist and threw a huge tantrum in emergency with tears and snot and everything until he came down and discussed Kaylee's treatment plan with me in detail.

Because that's what us parents do.

We advocate for our kids.

But Kaylee needs this NJ tube.  I am convinced beyond a shadow of a doubt and believe me I took some convincing.  I was a very hard sell.  They had to work hard to convince me that the only healthy option was to have my baby hooked up to the feed pump pretty much 24 hours a day.  They had to work hard to convince me that the only healthy option was subject Kaylee to having a tube shoved a LONG way into her digestive tract while exposing her to x-ray.  There is something inherently disconcerting about putting yourself in protective clothing so you can stand and hold your child's hand while they expose her to the rays you just clothed yourself in lead to avoid.  They had to work hard to convince me that her food needed to bypass her stomach and the acids in there that would help her body use her food more effectively.  They had to work hard to convince me  that we needed to stick with a regime that means whenever Kaylee's tube blocks, kinks or gets pulled out we need to disappear into hospital (home of nasty germs) - and it will likely happen just as we are baking a birthday cake, or planning a trip somewhere or trying to just have ONE day of NORMAL.

The fact of the matter is, what is in Kaylee's stomach takes regular trips up to the back of the throat and quite often all the way out.  The more that is in her stomach, the more likely it is that a detour will be made into her lungs and start breaking down her lungs.  And research and experience shows that Kaylee's reflux is only going to get worse.

So we are in need of a surgical tummy renovation and until we get it, we are on the NJ tube.

Kaylee's tummy renovation will include a different type of tube which will go through the wall of her tummy giving her a cute party trick of being able to eat without anything in her nose OR mouth.  We  will be able to hook up her feed to a little tube installed on her tummy which will look like the bit where you blow up a beach ball.  It will mean no more NJ.

This is our next step.

And I am very ready to take it.

We just need to wait for the cogs to turn, the red tape to be cut and the paperwork to be done and it to be our turn.  So we are going home to wait and come back to Melbourne and do this thing.  And I will not be sad to say goodbye to our NJ.

Monday, March 19, 2012

Update and why I keep a nature journal

I am sorry for not keeping everyone better up to date but no news has been largely good news.

Kaylee's heart op has been a resounding success.  Her artery is a wee bit leaky and a wee bit narrow still but that is to be expected and we just watch it until she has another surgery somewhere down the line - possibly not until she reaches puberty.

All the specialists, nurses and random staff members involved deserve sloppy kisses and big fat gold stars and Kaylee herself deserves a galaxy of gold stars and gets lots of big kisses.  We have dodged every bullet and the only complication has been an easily managed urinary tract infection.

Now we are over that first big scary hurdle it is time to focus on what's next.

Formulating a plan of how to do that involves numerous specialists, departments and the negotiation skills of an UN mediator.  Anyone who feels they are being left out of the loop where Kaylee is concerned, rest assured, there is no loop.  There is currently a great big blob with me sitting in the middle of it closing my eyes and praying to have the strength NOT to beat a gastroenterologist with a haggis until he sees things from my perspective.

Kaylee's feeding needs sorting, a plan for her gastro stuff needs formulating, a timeline which takes into account the fact that her cleft needs fixing needs making and a plan for future cardio assessments needs reviewing.  This could take one day, one week or one month.  Welcome to the world of special needs parenting.

In the middle of all this I am trying to carve out time to sit by the window and write in my nature journal.

My nature journal is a random collection of bird identifications, cloud descriptions, pondering on the weather and ruminations on the picnic-ing habits of the staff and families here at the hospital.  There is the odd very amateur sketch or feather sticky taped in.  Much of it would not make sense to anyone else.

Why bother with this when there is so much else taking up my time?

Because of the answer God gave Job.

When Job asked that universal question of "Why?" God replied with a long description of the wonders of creation.  If you stayed only with a surface reading of this book, you could be forgiven for thinking that God dodged the question.  But the truth is, God recognised the true question within that "Why?

There is no answer to the "why?" question which will satisfy us in this lifetime.  Nothing will make it OK.  The true question within each of us - the question that bursts from us louder and clearer when we are stopped still by trauma - is: "Are You bigger than this?"

Are You bigger than this pain?  Are You stronger than this disaster?  Can I trust You to make this OK?  Even this?

And written in the love letter of creation is a very clear message:

I am Huge.

And written in the Word is another:

I love you.

And if you put these two together.....
it makes tomorrow not so scary. 

We are having fun with cuddles, trips to the zoo and a million different good things and I am working hard to get a plan to deal with the not-so-good things.  Kaylee is doing beautifully.

And when I am tempted to yell at specialists or stress about that which is yet to happen, I grab my pencil and write about clouds.  And for a moment or two, remember that God is Huge, and He loves me.

Wednesday, March 14, 2012

Breath, then do the next thing

Miss Kaylee Grace is breathing room air.

No prongs, not dots, no nuffin!

Our old foe reflux is ramping up now that Kaylee is getting all her food through her tube and the tummy doctors are getting involved.  There are rumblings in that area and I will share what the plan is once we have something more definite.

I have been writing in my nature journal and watching the birds and parklands out the window of Kaylee's room.  It is an indulgence that is doing me good.  Somehow writing down the names of clouds, birds and trees and stretching my writer's muscles in a different direction gives a bit of balance to my mind.

Kaylee is not happy today with reflux and tummy pain.  I am hoping the tummy doctors can make a good plan for my girl.

Monday, March 12, 2012

coming home...

Coming on to Koala ward, with the cardiac nurses who I know, love and have worked with on and off for six months, is like coming home in a way.  ICU was fabulous with Kaylee ticking every box correctly and we caught up with a few old friends and made a few new ones - but here on Koala is home.  Partially because here is where I get to work.  This week we start to look beyond the ticker.  This week we start to put together a time line of treatment and therapies.  Our room looks out over the parklands.  I watch the trams go past, the rainbow lorikeets in the gum trees, the joggers running past - all oblivious to the fact that I am sitting in here with a miracle, working hard to enable more miracles to happen.

She is pink and beautiful (as opposed to slightly purple/blue and beautiful).  She wants to play and gets all excited then realise moving around makes her chest hurt and grumps which is sad and funny all at once.  I expected to still be in ICU at this stage, maybe even still intubated, and she has surprised me.  I always feel mildly guilty when she surprises me like this, like it was wrong of me to underestimate her, but the truth is nobody expected her to bounce back this quick. 

Of course the last few days have not been without their hiccups.  We have had feeding tube issues - the kinks of which I am still (quite literally) trying to work out.  She is being treated for a urinary tract infection.  Erin has come down with a gastro bug so we are juggling that with the knowledge that if the other kids come down with it too we will have to ship Jon and the kids elsewhere and none of the kids have been able to see their sister since the operation as a consequence.  Plans for visits to the hospital, zoo and museum are on hold.  And it will take me several years to catch up on sleep if ever I get the chance

But her heart is beating, her skin is pink, we are making plans and to a certain degree, we are home.

Saturday, March 10, 2012

Pink and pretty

Kaylee is doing amazingly well.

She is breathing with just a puff of O2 via prongs.

She is awake and chatting.

She is fantastic!

Thursday, March 08, 2012


Left my beautiful girl with a big fancy pants anaesthetist today.  He opted to cuddle her all the way to the theatre so she wouldn't have to lie flat and get reflux.  He apologised to her for not being as good as Mum.

I left her and took the kids to the zoo.

The surgeon called me 7 hours later and told me that everything went without a hitch.

I am waiting for her to get settled in ICU where I will see her, still and sleeping, with tubes and wires, with her broken heart on the road to being fixed.

Praise God.

Wednesday, March 07, 2012

Count Down

We are on the count down now.  We have everything organised for tomorrow morning and barring crisis Kaylee will be in surgery by mid-morning.  Pre-admission is not terribly fun.  Lots of blood tests, poking and prodding.  I am not a huge fan of CT scans.  Beforehand we had to try three times to get a line in then I had to preserve the line for an hour and a half by trying to get her to not wriggle her foot, which was taped up and strapped down but her little toes kept wriggling.  Then we had to hold her down flat while she was put into a beanbag thing and sucked the air out of it to hold her still (lying flat+Kaylee=reflux).  Then they inject a radioactive substance into her vein and wear lead vests while the big scanning machine she is in takes pictures of the radioactive stuff moving through her heart.  All the while knowing that if at any point anything mucks up the pictures she has to have a general anaesthetic (with all the inherent risks) to get the pictures.  And that is just a simple test to prepare for the big stuff!

In every hallway I am seeing someone I know.  Every second nurse who I see is someone I have spent many hours watching over my baby with.  Having my older kids here is a balm for my soul and we are loving being together.  There are playgrounds, fish, sculptures, TVs and computer games to experience.  Having Jon here is like a drink of cold water on a hot day.  The first time I went in to the hospital I came across one of our old room mates.  Dempsey is a few weeks younger than Kaylee and she is from interstate too.  She just had a similar surgery and came through with flying colours - going home less than two weeks post-op.  This morning we went to the zoo as a family and checked out the monkeys and the butterflies.

As always this is a curious mixture of hard, frightening, miserable, beautiful, wonderful and amazing.

Saturday, March 03, 2012

Why I don't write about my other kids much....

You may have noticed that I haven't written much about my other kids lately.

It isn't because they are forgotten. 

One of the reasons is because, as a mother, I need to remember where my story stops and their story starts.  And I need to remember what is mine to tell and what is not.  I remember being shocked, embarrassed and upset when overhearing my parents and teachers talking about things that I had told them in confidence or things I had done that they had been privy to.  When my children are going through an especially vulnerable time in their life, adjusting to the needs of their little sister, it would be very unfair of me to share what is theirs with the world.  I need to respect their privacy.

Another reason is I need to remember that what  I do effects their relationships with each other and with other people.  I retired this blog a while ago.  This is in part because people had said to me on several occasions "Sorry I don't call/visit/write but I read your blog posts so I know what the kids are up to."  Now being a writer is HARD work.  Honestly, one blog post takes me a couple of hours to a week to write.  And no matter how hard I try I still have people COMPLETELY misinterpret what I write.  For example, I had one concerned reader write to me "angry and upset" that I would threaten violence publicly after I wrote THIS post.  I had someone else tell me just before I put the blog on ice that when they read my blog all they read was how hard I worked and how difficult my life is.  Which is about the opposite of what I was actually trying to portray with this blog at the time!  So I figure if people are going to use reading my blog as a substitute for actually having a relationship with my kids and getting to know them as individual people - well, I don't need that kind of pressure in my life right now.

I continue to blog about my journey and to use this blog as a platform to advocate for and educate about special needs.  By association some of my family's life is shared and they have been gracious to agree to this.  But all I will say about my big kids right now is I am SO PROUD of them I could burst.  Each of them is dealing with the stress in our lives in their own unique way.  And every time I look at them a little pot of love in my heart boils over because they are SO DANG CUTE!

But the sharing of their lives on the internet will be limited to photos and the odd cute thing they said or did.  Their inner world is their own.