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!