25/02/14 - admission day

It was admission day. I woke up early and lay in bed listening to the girls snore, and tried to out my positive face on. My family were arriving today, and I needed to make sure I was looking happy and ready to go. Stupid, because I know that no one expects me to be excited that my daughter is about to get cut up!

While we were having breakfast my phone rang. For a few seconds I let myself hope that the hospital was calling to tell us to go home, there's no bed for her, but they just wanted to let us know that Ellie's bed wouldn't be ready until 4pm. The admissions officer said to come over 3pm, because doctor Kimble needed to see us before 4pm. So we had a whole day to fill in.

We took Sophie to the museum to see the dinosaur bones and the penguins, and then went back to Ronald McDonald house to have lunch on the roof top. Bec, ash, and Nan arrived while we were getting lunch, and we all sat around in the sunshine until it was time for Drew and I to take Ellie to the hospital. Sophie went back to the hotel with Bec so she wouldn't have to sit around the hospital all afternoon.

Admission was very straight forward, and we were soon up on the paediatric ward again. I was hoping we would be in a real room, but it wasn't to be. We were back in the nursery, where there's crying babies and no curtains for privacy. But at least it's right across the hall from the coffee! 

Our nurse, Rosie, said she would go and call doctor Kimble, and then she left. I didn't see her again for an hour and a half. In that time, Drew got bored and went for a walk, and one of the anaesthetic team came to see Ellie. He listened to Ellie's chest and went through her history. He was happy with how her chest sounded this time, but needed to check with Mimi, the head paediatric anaesthetist and the lady we had last time. He asked Rosie if plastics had been called and she said no, she hadn't done it yet. I looked  at the clock and it was 4.45pm. I knew that we were told to be there before 4pm for a reason, and we weren't going to see doctor Kimble today.

I was pretty annoyed right then. We had come down early just so that Ellie could be admitted today for "further tests" as per doctor Kimble's instructions last time. I also wanted to talk to him about getting Ellie's grommets removed, and I was unhappy that we would miss out on seeing the people we really needed to see, just because Rosie had forgotten to do her job. I know nurses are busy. But let's face it, a phone call or a page takes 2 minutes max. And Ellie is a patient, just as important as all the rest.

THe nursing unit manager tried to calm me, and offered to get the surgical registrar in to look over Ellie instead. They came very quickly, followed by the anesthetic registrar from before. The general consensus was that Ellie was is great health right now, and they didn't think a chest X-ray was a good idea. I agreed, because she has had so many already and I don't want to over-radiate her too soon in life. I asked the surgical registrar about the grommets, and she said she would bring it up with doctor Kimble. 

The anaesthetist wanted to put an IV line in Ellie ready for the next day, but when he looked and couldn't find a vein he changed his mind pretty quickly! And with that, there was really no reason why Ellie should spend the night in the hospital, so he suggested we go back to Ronald McDonald house for the night, and just come back early in the morning. I wasn't going to argue against sleeping in a real bed for one more night! 

Back at the house we got the girls some dinner and settled them in to bed for the night. Drew and I both turned in early too. We had to be back at the hospital by 7am, and my parents wanted to see Ellie before that, so we were all planning to meet in Bec's hotel room at 6am. 

24/02/14 - on the road again

My day started at 4am, so that I could finish cleaning and packing. We don't have a time that we need to be in Hobart, but we wanted to get in mid-afternoon, just to give us time to unpack and settle the girls in before bed time. So the plan was to be on the road by 10.30am.

Now that Ellie is older and doesn't need to stop for a feed the drive is a lot quicker. We stopped in Campbeltown for lunch and the girls had a play at the park, which broke up the drive nicely and before I knew it we were pulling in to the car park in Hobart.

We were greeted by the lovely Penny at Ronald McDonald house, who had great news that we had been upgraded to the big family room. Lisa had originally thought we would have to squeeze in to a smaller room, but a family had checked out just in time. The first thing Sophie wanted to do was go to the play room, so I took them in there while drew unloaded our stuff from the car.

Nothing has changed since we were there in November. It's still our home away from home. I made a quick dash to the supermarket and grabbed some stuff for dinner, and soon enough it was time for the girls to go to bed and for Drew and I to sit back and relax for probably the last night in a little while.

Tomorrow Ellie will be admitted to the paeds ward and the adventure will begin. I'm still secretly hoping for a cancellation, but I think it's time I came to terms with the idea that this is really happening.

23/02/14 - completely unorganised

We leave for Hobart tomorrow, and I've packed nothing! My house is a mess, I have a laundry full of washing, and I haven't even made a list of what I need to do or take with us! This isn't like me at all: I'm usually so organised and ready to go, but this time I just don't feel it. I don't want the surgery to happen, and I think a part of me is hoping that sometime between now and tomorrow morning someone might call and say no, we're going to cancel. 

I know it needs to be done. I know it probably won't be as bad as I'm imagining. I know she is in perfect health going in this time. But ism till her mummy, and I still want to protect her. This next few days is just plain old going to suck.

20/02/14 - something has to change

After yesterday's debacle with ENT, I got pretty fired up. The current system of care for our cleft kids in Tasmania just isn't good enough. Problems are being missed and intervention isn't happening when it needs to, and something needs to change.

I started doing some research in to the systems in place in other states, and Tasmania is years and years behind. Other states have clinic based care, where you can walk in and see all the different specialists you need to see at the same place. Other states have a coordinator who manages the different appointments, so that us as parents don't have to try and remember who we need to call while we are worried and stressed. 

I spent a lot of time reading medical journals, and I found out that roughly 16% of kids who have coordinated care report problems that aren't being addressed. The figure rises to 75% for those with a care system like ours. That's just not acceptable.

So, rather than sit here and complain to myself, m going to do something about it. I'm putting together a full report, with my research and real experiences, and I'm going to beg the tasmanian government to make the changes that need to happen. My daughter, and the hundreds of other cleft kids in Tasmania, deserve better.

19/02/14 - one seriously unorganised hospital

My head is spinning after receiving a letter from the ENT department in Hobart, and spending all morning on the phone trying to sort out their incompetence. Below is an email I sent to our local member, and a strong campaigner for better health care in the state, Mr Jeremy Rockcliff. It sums up our experience...

Good morning Jeremy,

I know you are very busy on the campaign trail right now, so I won't bother you with trying to make an appointment for a face to face meeting. But my experience yesterday can not go unmentioned, and I would like you to keep it in mind when considering the joke that we call a health system.

As you already know, my daughter has serious medical complications. In November last year her plastic surgery and ear nose and throat (ENT) team made the decision to insert grommets in her ears to rectify a hearing loss problem. Since their insertion, Eleanor suffered from serious ear infections constantly, and at the end of December our GP did a swab test and discovered it was a staph infection. The seriousness of the infection meant that she was unable to have a vital surgery done in January, and our GP sent through an urgent referral to the ENT team in Hobart so that something could be done about it. 

For almost three months our daughter has been in unbelievable pain. Any parent who has watched their child suffer from the pain of an ear infection will understand our anger at the situation. She has had two courses of ear drops and four courses of high-strength antibiotics, and touch wood, the infection is currently clear enough for her to finally have her next surgery next week.

Yesterday (19th) I opened my mail to finally receive a letter from the ENT outpatients clinic. For a few seconds I was ecstatic, we would have answers to the problem soon. But that all went out the window when I read the letter. An appointment had been made, without any communication with us, for us to be in Hobart at 10am on Monday 17th February. Yes, two days before we received the letter.

A system that sends appointments without confirming if it will work for the patient is unacceptable. Not only were we given no time to organise to upend our lives and travel to the other end of the state with two children, but the timing of the appointment would actually have meant we would have had to leave home on Sunday and spend a night in Hobart so as not to be forced to wake our young children up at 5am. Never mind that we didn't even know about the appointment until after it had passed.

I phoned the ENT clinic to advise them of their mistake, and offered the solution that Eleanor will be on the paediatric ward next week if the ENT specialist can come and see her on Tuesday. I want her to be seen prior to her surgery, because in my opinion the grommets need to come out and I don't want her to have to go through two lots of anaesthetic. However, I was told that it wouldn't happen, because the outpatient clinic simply can't organise appointments for inpatients. Rather than trying to work out a solution for me, the receptionist insisted that there were no doctors or nurses available today (yesterday) to talk to, and I would just have to ask for an ENT consult when we were on the ward next week. I have serious doubts now that we will in fact be able to get the grommets removed this trip.

I questioned the long wait for an appointment given that Eleanor's referral was urgent, only to be told that we were "quite lucky to get one at all". Lucky? One look at the pain my daughter has been in tells me she's far from lucky. Since when was luck a factor in obtaining health care? I insisted that someone who knew what was going on was to call me as soon as possible, because I was incredibly unhappy by that point.

The next person I spoke to was equally as unhelpful. All that she could add was that I would need to ask our plastic surgeon to request a consult with ENT, and then if, and only if, one was available, a registrar would come to the ward to see us. I questioned the lack of care that Eleanor has received from ENT. I had to demand someone come and see us on the ward after her grommets were inserted, and was told a number of times that it wasn't going to happen before someone finally appeared. There has been no follow up care, and when our GP requested a consult for a serious complication, it was ignored for almost two months. Funnily enough, all the woman on the phone could tell me was that if we were worried about any aspect of her care we should have our GP send a referral! 

She also shared with me that the waiting list for appointments can be avoided, and suggested that had we taken her in to the emergency department in Hobart we would have been bumped to the top of the list. This to me reeks of favouring those who live in the south of the state; those of us living in the north of the state are being denied the care that is so important to keeping our children healthy, simply because of where we live. Hobart locals should not be getting prime positioning on waiting lists just because they are close by and can walk in to an emergency department with ease.

Our situation is far from rectified, and I will be calling a meeting next week with all of Eleanor's Hobart-based specialists to make sure that they know going forward what we expect from them.  I am confident enough to do this, but I know that there are plenty of other families in the state who don't have this confidence, and who will accept this lack of medical care because they don't know what to do about it. These are the people I worry about. 

I will be contacting members of parliament in the coming days to petition for a cleft coordinator, something that is available in many other states and organises all aspects of care for children like Eleanor who require care for a  number of specialists but are situated outside of the area. I strongly believe that this service would greatly improve the level of care for children like Eleanor, and I'm sure you will agree when I compile the information.

We all know that the current health system in Tasmania is laughable. I think it's perhaps something that you don't really understand the consequences of until it is your family being put at risk. Something needs to change, and my family are hoping that the state liberals can bring some much needed relief.

Thank you,

Tracey Clark.

16/02/14 - The date is set

While we were gallivanting around the Townsville country side on our well-earned family holiday, my phone rang. A new date had been set for Ellie's palate repair. There was a bit of confusion with the elective surgical nurse not actually believing me when I said she needed to be admitted the day before the operation, and trying to tell us we needed to come to Hobart a week before for pre-op, but of course when she checked with doctor Kimble and called me back the next day I was right. 

We will be admitted to the paeds ward on February 25th, for some chest X-rays and other tests, and then her surgery will be some time on the 26th. After last time, nervous doesn't even begin to explain how I feel right now. I'm terrified that she will stop breathing again and they won't be quick enough. I feel like crying every time I think about it, so I don't know how I will be able to hand her over in two weeks time.

1/02/14 - beautiful photos

Back in January we booked a cake smash photo shoot for Ellie's birthday. It was an expense we probably couldn't really afford, but I wanted to capture some beautiful shots of our little girl for her birthday, and I always regretted not doing it for Sophie's birthday.

Choosing a photographer is always hard, but when your child has a cleft, even once it's been repaired, it's a little bit harder. You need someone that is sensitive to the scars, but that won't make a big deal out of them either. We are incredibly lucky to have found the gorgeous Felicity Turner as our photographer. 

In august last year we had a family photo shoot with Felicity, and I loved her style and attitude. She is very warm and friendly, and of course, creates amazing art with her camera. So for us it was a no brainer. We arrived at her studio and were made to feel very welcome - I even got coffee! 

Felicity did a great job as usual, and we are so happy with the photos.

https://www.facebook.com/felicityturnerphotomedia?ref=ts&fref=ts
have a look at Felicity's facebook to see more of her amazing work! 

27/01/14 - eerily quiet here

Considering we usually have a million places to be each week, thinks are very quiet right now. Ellie should be having her 12 month reviews with her specialists, but everyone wants to wait until after her palate repair. Which means we are in limbo. We are still waiting to hear from the respiratory specialist and the ENT, which is making me more and more angry as the days go by.

But I am enjoying just having time to spend with Ellie, instead of rushing her off to appointment after appointment. Things will change after her surgery for sure, and I'll be dreaming of this quet time again!

20/01/14 - no more stinky ears!

Ellie's ears are clear!

It has taken three months, three courses of antibiotics, two courses of ear drops, but finally, FINALLY, there is no infection in there! The smell is gone, the discharge is gone, and her mood has improved so much because of it. It must have been horribly painful for her over the last three months. I'm glad it's over. I just hope we can keep them clear until her palate is repaired, and that everyone is right when they say the palate repair will stop it from happening again! 

Meanwhile... We still haven't heard from the ENT team in Hobart. How slack is that? This health system here s starting to really annoy me.

19/01/14 - communication

I am really surprised with how much of a difference the sign language has made to Ellie. Before  we started, she was always growling and yelling because she couldn't say what she wanted to say. But after only a bit over a week, her mood has improved and she is starting to communicate with us.

No surprises, but her her first sign she picked up was for food! That was followed by drink, play, and thank you. But what has surprised me, is that through teaching her these, she seems to have pick up some verbal speech as well! It might not be clear like most babies, but she can now say car, ta (thank you) and mine. She might have even said Nan the other day. 

I love how clever she is. And so does she. Whenever we respond to her signs she gets really excited, and looks so proud of herself. 

Yet again, Ellie has seen a hurdle and smashed through it. How does she do it? 

13/01/14 - Speech review

Ellie needs to have a review done with all of her specialists at important milestones. 12 months is one of them. We got the letter for her speech review in the mail last week, but Sarah, our speech pathologist was on holidays. She called today, and like always, she was happy to do the review over the phone, rather than dragging us down to Hobart.

I broke the bad news about Ellie's cancelled surgery. Last time we saw Sarah was the day after Ellie stopped breathing during surgery, and she had said then that we were walking a fine line to avoid massive speech delays. She will be organising for Ellie to have intensive therapy after her repair, to try and get her back to standard speech. Usually clefties don't need much in the way of therapy until they are three years old, but because Ellie's repair is so delayed she is getting used to how her mouth works now, and the challenge will be to break her from her current habits and patterns.

We had a chat about the grommets too, and I asked if they are really necessary from a speech perspective, given that her hearing loss was limited to begin with. Unfortunately she thinks they are though, so I guess I have to let them stay in. I'm still not 100% convinced though. She is going to organise some extra hearing tests for us, to check how things are in there right now before we make any decisions.

Last week I started teaching Ellie baby sign language, as a way for her to communicate with us. Sarah was excited, and said she was going to suggest it to us if we hadn't had our repair surgery! So points to me for being awesome! 

I have to admit, I got off the phone feeling pretty down and out. I was hoping that the news would have been a  bit more positive, but at least we have a plan in place. I've had to change our health insurance extras to allow us a higher level of cover for speech therapy, because our local free clinic won't be able to over the intensive level of therapy that she will need.

I guess like everything on this journey, we just wait and see how it goes. Ellie might never have perfect speech, but she will one day be able to talk to us. One day. 

9/01/14 - No real improvement

Ellie has finished her first course of antibiotics, but her ears are not getting better. There is still a horrible green discharge, and they still smell really bad. So today we went back to doctor Naiker for another check up.

He wasn't really surprised, because staph is such a hard bug to kill, but he does think we might need some more specialised care. He has referred us back to the ear, nose and throat tam in Hobart. He also put her on a second course of antibiotics.

 I am so frustrated with these grommets and the trouble we've had with them that I'm very close to telling them to take the stupid things out and leave them out. I know that they really have improved her hearing, but is it worth the pain she's in now? 

8/01/14 - Happy birthday Princess

Today is an incredible day.

 Today my baby girl turns one. 

It's been a big year for her. There have been a few times when I didn't know if we would get to see this day. She battled to survive even before she was born, and she had such a rough, scary start with being taken away from us and connected to so many wires and tubes to keep her alive but she survived, thanks to the incredible hard work and skill of the obstetrics, paediatrics and neonatal teams in Burnie and Hobart, and a selfless blood donation from a stranger. 

she's been through two surgeries, and fought to stay with us again when her lungs gave out and she stopped breathing. The thanks for that one goes to the quick thinking of her surgeon and her anaesthetist. 

she has overcome the horrible reflux demon, battled countless chest and ear infections, even the staph that's currently trying to take over won't stand a chance against her. 

But most importantly, she has brightened the lives of everyone she meets. Not just our family, but her doctors and nurses, her specialists, strangers in the street. She is teaching people compassion, and bringing the best out in us all. 

Her next year will be full of a lot of the same challenges, but we know she has the strength and determination to keep going. 

We love every millimetre of her, and her laughter is worth every millisecond of the bad times. 

HAPPY BIRTHDAY ELEANOR ROSE. 

6/01/14 - No surgery for Ellie

This morning I calls doctor Kimble's office to find out what will happen with Ellie's surgery. I really didn't want to make the call. One one hand, I desperately want her surgery to go ahead, so that we can get it over and done with and move on. But on the other hand, I also desperately ENT want them pushing her through if there's a chance she might not be alright. Catch 22: nothing doctor Kimble could say was going to make me happy.

My called was answered by his lovely receptionist, who was less than surprised when I said I'd tried to call the hospital but couldn't get through to anyone there. She said she would wave Ellie's file under doctor Kimble's nose as soon  as he got in, and he would call me back.

I was expecting to spend the day anxiously waiting for a phone call, but instead I was talking to doctor Kimble within 10 minutes. He agreed with me that the surgery needed to be cancelled this time. He can't operate on her when she has a staph infection, and her reaction last time means that he's just not prepared to touch her if she's not 100% healthy. He said he would call next week and see how things were going, and then we would make a plan then.

Even though I knew it was going to happen, and I'd been hoping for it after all, I was still deflated. We wouldn't have to make the trip to Hobart unnecessarily this time, but we had still rearranged out entire summer for nothing, and now we would have to do the same again.

Today was one of those days where I spent a lot of time selfishly feeling sorry for myself. 

4/01/14 - celebrating in style

Ellie's birthday this year falls on a Wednesday, so we decided to move the celebrations forward a few days so that everyone could come and have so fun. There are so many friends and family who love her dearly, and I wanted them all to have a chance to be here and celebrate what an amazing journey she has been on this year.

I made an incredible cake, with a hungry caterpillar theme, and we planned a BBQ in the backyard, with a jumping castle for the kids. I cheated after spending a week working on the cake, and ordered pre-made salads, so all I had to do on the day was set everything up, and I was far less stressed than I normally am when I'm hosting an event. Here's the cake....

Typical of Tasmania, the weather wasn't great. There were a few quick showers, but we managed to keep everyone outside anyway. Everyone was having too much fun to be bothered by a little bit of wind and rain. The kids loved the jumping castle, and the grown ups stood around talking and laughing. It was brilliant. Ellie stuffed herself with sass ages and potato salad, her new favourite food.

Ellie was very spoilt, and got showered with beautiful presents. A birthday two weeks after Christmas, she's going to think this present thing happens all the time! She's still not great at opening them yet, but Sophie stepped up and "helped" her! That's what big sisters are for I guess! 

We would like to thank everyone that came and helped us celebrate. It wouldn't have been the same without our friends and family. 

2/01/14 - Confirmation of my fears

48-hours after her swabs were sent, I called doctor Naiker for the results. And while I wasn't exactly surprised, I was still very bummed out when he said the infection was staph.

Staph is a pain in the bum to get rid of. It gets in there and overstays it's welcome, and it's an oportunistic little bugger who will jump from one spot to the other at a drop of a hat. So knowing that her ears are connected with her palate, and that an infection post operatively could be a disaster, I knew that when I could finally get hold of doctor Kimble we would be cancelling her surgery.

Doctor Naiker has ordered that we continue the high strength antibiotics until it clears. She's probably going to need a second course, maybe a third. We just have to play it by... Ear. 

30/12/13 - really Ellie?

Drew and Sophie have gone camping for the new year, and I made the choice to stay home with Ellie, just incase being out in the cold of a night caused her to get sick. They left yesterday, and today Ellie has woke up with a rattle and a cough! What's with that?!

We had a horrible night, with Ellie waking up coughing at 3.30am, and no amount of ventolin, redipred or flixotide could stop it. I ended up sitting in the rocking chair with her, patting her on the pack and rocking her back to sleep. She eventually settled around 5.30am, but by then I was wide awake so I didn't bother going back to bed.g it to love getting 3 hours sleep with no hope of a nap during the day.

Luckily for us, I already had an appointment booked with doctor Naiker to have her ears checked. He looked almost as disappointed as I felt when he listened to her chest and found both her upper and lower chest infected. He increased her standard redipred dose, and ordered 2-hourly ventolin for 48-hours. 

Next it was time to deal with the stinky ears. I purposely didn't clean them this morning, so that he could see and smell how bad they are. The left side was bleeding again, and one look had him ordering swabs to find out what the infection actually was. One of the things I love about doctor Naiker is that he is always on the same page as me. He said it would be 48-hours until the results were back, but started her on high strength antibiotics just in case it was something serious. He also added a prescription for painstop to help get the ear pain under control. 

He didn't want to say yes or no whether the surgery would be cancelled, but we both new that it most likely would. I tried to call doctor Kimble after we left, but it is impossible to get anyone from the hospital or his office on the phone at this time of year. Everyone is on holidays, so we just have to wait until next week and see what happens. 

Even though I don't want it cancelled because I really want it to go ahead, I just want to know that we won't be travelling down there for no reason.