Phew

UPDATE:  IMF stands for inter maxillary fixation.  The maxilla is the upper jaw bone (actually two bones fused together, I understand).  It’s also the other location apart from the mandible where people get ameloblastoma, although it’s rarer.

We held out hope it couldn’t be an infection.

It seemed too far down the track. I didn’t have the other symptoms. And Dr P wasn’t worried.

But the swelling was sudden and worse two days in a row. The only thing that had changed was massaging my neck dissection scar with bio oil, ten minutes, twice a day. Could that have caused the swelling?

It might just have. Because it wasn’t an infection. Disruption of lymphatic flow, Dr P said.

Phew.

During surgery, as we already knew, they removed the top two levels of lymph nodes in my neck. I gather this is usual during neck dissections to improve access, but it was also precautionary in case there was any malignancy. They also used micro surgery to connect up the artery and vein that formed part of the fibula flap. Now instead of flowing down, Dr P told us today, the blood flowed up and around then down.

The surgery disturbed both of the drainage systems in my neck and jaw: the blood and the lymphatic system. Together with the trauma of surgery, that adds up to a lot of swelling. The body adapts and gradually the swelling subsides.

Dr P didn’t offer a theory as to why the disruption of lymphatic flow caused the sudden explosion in swelling, so we’re sticking with our little theory about the scar massage. I haven’t massaged for the last two days, but will probably start again tomorrow. More gently this time. I want a flat white scar when this is all over, but the swelling has impacted my speech and got very uncomfortable there for a day or two.

The infection drama aside, it was a fun checkup. Two of the speech therapists came in for their meeting with Dr P as I was in the waiting room. F, who saw me in hospital and will continue with me once my jaw is unwired, and C, who saw me the night before surgery in hospital. (Too many Cs I know, just hang in here with me!)

I like getting to listen to specialists discussing me because you learn things you might not otherwise, like my braces are actually called an IMF. I must look that up.

Dr P looked through my CT and OPG scans from last Monday. We’d forgotten them for our last minute appointment last Friday. My new jaw looks to be healing well and shaped well. The titanium jaw is set a little outside the fibula-cum-jaw bone. If at some point the soft tissue settles so much that the titanium plate starts to show through as a bump on my jaw, they can remove the plate. (Another surgery I’ll be hoping to avoid!). The shape of the new bone is what counts and that is looking good.

Everyone has a look at my fibula flap too. Still pink and healthy. The wiring is looking well cleaned and cared for, they commented. A relief because I’d been feeling a bit guilty I may have contributed to my non-infection by not keeping my mouth scrupulously clean.

And this is where I feel a little embarrassed. It’s not like I don’t know people read this blog. I do. Quite a few people, though nothing like the number who read Darren’s posts while I was in hospital. But I write this as much for me as I do to share news. Sometimes more, sometimes less. It depends on what I’m writing about. Often I just get wrapped up in getting it out of my head.

I knew my speech pathologists had found the blog. (Hi.) But they mentioned it in front of Dr P today and he knew. Koala bear or something, he said. Close. I don’t know if he’s read any of it because he’s definitely a man in demand, but now I really am feeling the pressure to get my updates right!

As we left, we saw J in the waiting room and caught up. I’d met him while I was in for the second biopsy and he was three weeks post op for the same surgery. He told me about how he’d coped by challenging himself to stay calm and celebrating the removal of each tube. It was great to have the chance to tell him how much that had helped me.

Onwards and upwards from here on. My next appointment with Dr P is next Saturday and he may, just may, cut my wires. It will be two days short of five weeks post-op. My jaw won’t open much to begin with, but within days, it may open 10 to 15mm. Now that’s something to look forward to. What should be my first non-liquid meal?

Manning the home front

Home sweet home, as they say.

It is so lovely to be home.  I was prepared for it to be a challenging adjustment, but it’s been comfortable and easy.

Perhaps not so much for Darren running between his dual caring responsibilities.  We are keeping him on his toes.  Oh yes, we are.

There is a lot I can do for myself.  Whip up soups and smoothies in our new Kitchenaid blender (love love love).  Make tea.  Take my pain meds.  Dress myself.  Take myself to the bath room.  Hobble around the apartment on crutches.

There are things I can’t do by myself.  Shower.  Look after Alannah.  Get food or drinks from the kitchen to the dining table.  Or tea to the couch.  Change my own tracheostomy dressing.

To help us adjust, we’ve had home visits each day from Royal District Nursing.

First task: how to shower.

It’s a bit tricky in a shower-over-bath situation.  Darren had already put his old tradie skills to good use installing a new shower head.  Our fancy new shower head can be adjusted in height and used by hand.

This just left us the challenge of getting me in and out of the shower/bath and enabling me to sit safely under the shower.  For the first few days, we used the blue stool Mick had kindly lent us from his own non-weight-bearing leg injury days.  It worked, but the nurse had an even better idea.

Yesterday, she brought us a bath board.  It fits neatly over the bath and enables me to sit down and swing my legs into the bath.  Darren just adjusts the shower to the right height.  And hey presto, I shower myself.  He just needs to be nearby to supervise me getting in and out and to hand me my towel.  A girl could get used to this service.

      

Second task: how to clean and dress my tracheostomy wound.

I still have a few wound sites, of course.  However, my neck dissection scar is undressed, with my plastic surgeon’s fine needlework on display.  My fibulectomy scar on my leg has some neat strips over the stitching.  These will peel off as the wound scabs and heals.  There is also the wound site from where my central lines entered on my collarbone.  The hospital nurse removed the central lines on Tuesday and the site is almost healed.  The home visit nurse is just dressing it to be extra sure.

This leaves the fun one: the tracheostomy hole.  It is slowly but surely closing over.  In the meantime, it needs changing two to three times a day.  The nurse only does it once, so this is where nurse Darren earns his stripes.

After some false starts, we have it down to a fine art.  The dressings are strongly adhesive and it stings to pull them off the tender neck and collarbone skin.  So I grit my teeth and do the dressing removal.  Darren then cleans the wound site with alcohol wipes.  I’ll spare you the details.  I am lucky Darren isn’t squeamish.  Again, the alcohol wipes sting because the skin is red and aggravated from all the dressing, undressing and redressing.  Finally, Darren dresses the wound with one of the all-in-one dressings the nurse provided.

The nursing home visit service has been wonderful.  The nurse even came to our friends’ place in Kensington yesterday for my visit.  You see, before I left hospital earlier than expected, Darren had lined up the services of our lovely friend Mel to look after Alannah while he played soccer.  She was happy to take on another charge (in addition to Alannah, her own son Sammy and her bump!), so Darren dropped me there for the afternoon as well.

We had a lovely lazy afternoon.  Alannah and Sammy did get some time to play together, but their different sleeping times meant they alternated sleeps in Sammy’s cot.  I had a little afternoon snooze too.   Sammy clearly enjoyed the play date.  Sammy, said his mum, give Alannah a kiss.  Awww….

The kiss -- 2

And then…

I rushed out the door…

And locked myself out.

Yes sir, I really did.  That must be the universe saying, be more grateful.

Oh did I laugh.  You’ve got to a laugh, as they say.

I am back in again and, many many phone calls later, it turns out the credit card charge is a mistake, not a fraud.  Hooray!

All’s well with the world again.  Except for the tumour.  And her days are numbered.  Three, in fact.

We’re off to see Dr P to talk about my latests scans, surgical margins and other fun topics.  My appointment was bumped to this afternoon and we may have a wait, so I’m taking paperwork with me.

We might even scout out a decent coffee place.  If you missed the first warning (visiting in hospital), the coffee at the cafe on the hospital ground floor is awful.  The food wasn’t anything to write home about either.  You have been warned.

Catching breaks

I am racking my brain to think of the breaks I have caught and not appreciated.

Why?  Today, because the sprint wasn’t challenging enough, we’ve added a few hurdles.

First hurdle: fraudulent credit card charge.  That’s right, folks.  Our joint credit cards are about to be cancelled just before I go in to hospital.  I suppose the faint silver lining is that I caught it.  We could have been looking at a few weeks of unbridled plundering of our credit cards.

Of course, the bank can’t cancel the cards on my authority because I’m only the secondary card holder.  So before Darren calls them back, I’m doing the essentials.  I’ve paid my oral surgeon’s bill and my hospital excess (we might as well get the points and somehow it feels marginally less painful than paying cash).  I’m about to nip down to the bank to get Darren some cash (yes, we should have separate ATM cards, but we don’t).  And then I’ll get my legs waxed (for a few weeks grace from hairy leg mouth, mmm mmm).

I’m still smarting from losing my wedding ring and having to rush around filing police reports and claims.  No news on that yet, by the way.

Oh my.  The hospital just called back.  It turns out I only have to pay the hospital excess once per year so now she is refunding it.  Someone, get this girl a drink.  I’m not allowed to drink.  Tea, perhaps?

The point of this ramble was that I am running out of time.  Ally is in day care and we have our final consultation with Dr P this afternoon.  I want to reply to all your emails, comments, texts and cards and time is getting away from me.  I will do my very best but please know that I appreciated them all.  Alannah appreciated hers too (especially the wrapping paper and even more so the pen her mummy was trying to use to keep track for thank you cards).

On your marks, get set…

Pre-admission testing

There is one week to go and the race is on.  We have entered the sprint section of proceedings.

Over the last two days, I’ve had blood tests, a chest x-ray, an ECG (electrocardiogram), another MRI, another OPG (orthopantomogram), a general checkup, and my pre-admission clinic appointment.

The point of the blood tests, chest x-ray, ECG and physical checkup is to ensure I’m ready for them to slice and dice me for 10 hours or so.  Good respiratory function, good cardiac function and, they hope, no nasty surprises.

To that end, I also had a general checkup with my consultant physician, Dr L.  She will be responsible for my recovery.  In particular, she’ll be there to catch any infection early and treat it.  She listened to my heart and felt the lymph nodes under my arms and on my neck.  She’ll check on me each day, either early or late, she said.

Blaster also had a checkup, courtesy of the MRI and OPG.  They will show if she’s grown, wreaked further destruction, or been otherwise nasty.  For tumours, the MRI has the advantage over an x-ray (like the OPG) of showing good contrast between the soft tissues.  Of course, this is thanks to the contrast dye with which they inject their victim.   Not my favourite part, but I behaved myself today.  Not a single tear.  A little victory.

And, of course, no week is complete without paperwork.  At the pre-admission clinic, one of the clinical nurse consultants checked through my admission paperwork and gave us the opportunity to ask more questions.

They will probably call me on Friday afternoon, she said, to advise when I’m to be admitted this Sunday.  I’ll be on the ward that night, then in intensive care from the Monday night for about a week.  Unlike in public hospitals, I’ll have my own room in intensive care.  The walls are glass so they can keep a close eye on me, but I shouldn’t be disturbed by other patients.  The visiting rules for intensive care are family only but, she said, they should be flexible with visiting hours for Darren if he explains about Alannah.  (She won’t be visiting at least until I’ve had the tracheostomy and nasogastric tube removed and I’m up on the ward and, even then, we’re going to play it by ear.)

A few of you have asked about visiting in hospital.  As I said, the hospital’s visiting rules for intensive care are family only, but you’re very welcome to visit when I’m up on the ward.  Please remember I’ll be drooling and won’t be able to talk much, so have low expectations!  Visiting hours are 11am to 8pm.  The phone number for Macquarie University Hospital is 9812 3000.

Here are some photos of the ward rooms, courtesy of the hospital website.  There’s a small wardrobe and fridge over in the right of the photo and the ensuite is off to the left.  The computer “cockpit” is very cool: television, movies, radio, internet, telephone, as well as meal ordering and medical records.  No meal ordering for me of course.  Just slush and mush on the orders of my dietitian and speech pathologist.

 

 

I’m getting together my belongings for my little jaunt.  I’m going to load up the iPad with some podcasts and music.  I’m contemplating some audio books.  I have a pile of books to take too and some others I’ve ordered on their way.  Any genius suggestions welcome.

Party yesterday

Thank you to everyone who came to Alannah’s party yesterday.  It was so lovely to see you all.

Alannah is feeling a lot better today.  After two doses of panadol yesterday and another overnight, her fever started to go down last night.  She’s still warm but not out of sorts any more.  Big relief.

More soon.  A few medical appointments coming up this week, plus I’ll be admitted to hospital next Sunday for my big operation on Monday.

Birthday party tomorrow

Alannah’s first birthday party will be on tomorrow – rain, hail or, well, rain.

It won’t be fancy and we’ll have to be inside in the community hall, but we would love to see you there.

I do hope I invited you in all the chaos and distraction.  So much of it has been last minute because, for such a long time, we didn’t know if I’d be in hospital already.  I comfort myself that this is a good test run for next year when she will know what’s going on and I will be well.

Hope to see you at tomorrow’s festivities.

Good night.

Baby’s Birthday

It has rained down all day.  Bucketed down.  Still now the rain thunders down outside.

Today our baby turned one year old.  We couldn’t go to the playground or the zoo as we’d planned, but the three of us did brave the wild wet.

We kept up our morning tea tradition.  We patted dogs.  We had sushi with Ma (my mum) for lunch.  We had birthday lamingtons and afternoon tea with the kids and carers at Alannah’s day care.  How she fit in a full terriyaki salmon sushi roll followed by afternoon tea I do not know!  We played and cuddled and chased and laughed and stuck out our tongues.

And before bed, Alannah and I snuggled in the armchair in her room to read Baby’s Birthday, twice.  It’s a tattered and beloved Little Golden Book that Grandad and Ma read to me over and over and over s as a kid and I now read to Alannah.  It was the first book I ever read to her, all those many months ago when she was only ten days old.

Wake up, baby!  This is your special day.  A birthday is full of fun and surprises.  Baby is dressed in brand new clothes for this special day. …

Baby's Birthday Cover.jpg

Intermission

I’ll post tomorrow about our pre-op consultation this afternoon with my plastic & reconstructive surgeon, Dr A.

In the meanwhile, a little intermission.  An antidote, if you will, to the long and dense posts in the Q&A series.

I am optimistic again.  I wake more easily in the morning.  I don’t skulk back to the bed for sleep at the first opportunity.  I am taking photographs again.

I am working my way – slowly – through the myriad tasks to be ticked off before I go into hospital on Sunday 31 July.  (The hospital admission and surgery dates were confirmed today.)  We did a massive clear out at home over the weekend.  Darren and I even headed in to the Rocks on Sunday night for a ‘Last Supper’.

Sadly,  there was a bump in the road over the weekend.  My wedding ring must have fallen off my finger while at the playground at Centennial Park on Saturday afternoon.  Darren returned to search, but in vain.  He had already lost his ring to the Hawkesbury River a few years ago.  There’s nothing to be done but keep calm and carry on.  There’s too much more important to think about right now.

And speaking of what is more important… With Alannah’s first sleep now 10.15am, we head out first in the morning – often to the playground, then to a cafe for morning tea.  An orange and milk for Alannah, coffee for me (and Darren on the weekend).  Such a lovely little tradition to kick off the day.

 Triptych Alannah at L'Espresso - 18 July 2011.jpg

Hibernation

It’s a tough gig preparing for hibernation.

Especially for Alannah Bear.  I knew that many changes were coming up over the next few months.  So we got to work.

Alannah is due to move from size 0 to size 1 in clothes and from pre-walker shoes to walkers*.  One afternoon dash around the Westfield Bondi Junction sales did the trick.  Three pairs of shoes and a mountain of gorgeous but bargain clothes that will take her through to Autumn next year.

She is due to change routines.  She had already started to cat nap, protest about her day sleeps, and not be tired at 7pm.  All signs that a change of routine was imminent.  After a week of experimenting, I went back to the book of routines that had always worked.  Bingo.

She is due to move from formula to cows milk and from bottles or soft sippy cups to hard sippy cups or proper cups.  I had to wean Alannah before my first biopsy.  We had made the move to hard sippy cups at the same time.  Why not, I figured.  With her first birthday looming, we tried her on cows milk.  A hit.

She will likely spend more time at home than she is used to over coming months.  I can’t take her out and about twice a day, but the blustery winter weather won’t help either.  Good bye dining room, hello play room.  The new square dining table is perfect for eating lunch together or for keeping Mum’s cup of tea safe from curious hands while we’re playing.  The gelato rug is soft and inviting.  The beautiful glass doors look out on to the balcony and the light is gorgeous, even on the most overcast day.  Even better, Alannah can spot birds on next door’s roof.  Bir, she cries as she flaps her arms.

I also won’t be able to sing or read to her, at least for a while.  This morning, to the dulcet sounds and glorious smells of Darren baking portuguese tarts, I recorded six books for her.  The first of many.  Some favourites so far: Possum Magic, Koala Lou, Guess How Much I Love You, Where is the Green Sheep?, The Very Hungry Caterpillar, and Time for Bed.  (A favourite author in there perhaps?)  All saved to iTunes ready for her little iPod.  She can listen while I’m in hospital, but also when I’m home again while we snuggle on the armchair in her room.

Now, if you’ll excuse me, the three of us are off to enjoy the sunshine in Centennial Park while the winter sun still peeks out from behind the clouds.

*You move to hard soled walkers about 6 weeks after you start walking.  That’s bang on 1 August.  Of course.