Even if we didn't have the Peppa Pig show to go to though, we probably still wouldn't be able to do it then anyway. Sophie is sick now, and it usually takes her a few weeks to come back to full health. Never a dull moment in our house!
Tuesday, 8 October 2013
9/10/13 - A "Would have Been" Date
Alison from the plastics team called this morning to see how Ellie was doing, because they had a date reserved for her surgery on the 28th October. I explained though that she still hasn't been cleared by our doctor, and that we have commitments at the start of November. So instead she is making a note that we're not available until after the 8th of November, and it will most likely be done around the 16th instead.
Wednesday, 2 October 2013
01/10/13 - No Clearance, and no Compassion Either
Our doctor called yesterday to move Ellie's scheduled appointment forward. I was looking forward to it - I thought she seemed quite well and I figured we would get the all clear and hopefully be able to head back to Hobart within the next two weeks. If we can't do it in that time frame it has to wait until mid-November, just because we have a few other things coming up that we'd planned for "after surgery" that we don't want to cancel. Mainly Sophie's special trip to Melbourne to see Peppa Pig live!
When we pulled up at the doctors office Sophie was sleeping, so Drew stayed in the car with her while I took Ellie in. As it turns out, that was a good thing. There were quite a few people in the waiting room, and Ellie and I were sitting across from a young lady of around 20 years old. She looked ridiculous sitting there taking selfies of herself, and I was laughing to myself about how great she no doubt thought she looked.
Out of no where she looked up, and asked me if my daughter has Down's syndrome. I was shocked. I replied quite harshly with "no she bloody doesn't, mind your own business" only to have her say "oh, because her face looks a little weird"... What the?! What gives her the right to say my child looks weird? What gives her the right to open her mouth and say whatever she thinks, when the rest of us sit quietly and ignore her own ridiculousness?! I'm glad Drew wasn't with us.
I was mad, but I managed to refrain from saying anything else and just walked out of the room. I was surprised actually that I wasn't as upset by that as I have been by other hurtful comments, so I guess I am growing a thicker skin. I was still fuming though.
Not long after Doctor Naiker came out to take us through. I calmed down and got ready to get good news. I explained everything that had been happening in the lead up to the surgery, and he did an examination of all of Ellie's vital bits and pieces. He decided that although her lungs are now clear, her ears and throat are still inflamed. It's not bad enough to warrant a course of antibiotics, but it is enough to put of surgery for a little bit longer. Ellie's surgery isn't urgent, so there's no need to rush and risk going in before her body is ready. We'd all rather be overly cautious than take risks with our beautiful little girl.
Doctor Naiker wants to see us again next week to take another look, and after that I headed back to the car. I was still cranky and a little bit hurt by that woman's comments, but I played it down for Drew's sake. Not much of the day went the way I wanted it to, but when I got home and posted to Facebook about what had happened the support and disbelief of our friends certainly made me feel better about the world.
The way I see it, there will always be idiots in the world. Whether Ellie had this condition or not, someone, somewhere would find something dumb to say. But hopefully by educating people a little bit and bringing more awareness to the condition, I can spare another child the pain of these sorts of comments one day.
Monday, 30 September 2013
30/09/13 - Giving Back
For a while now I've been thinking that it would be nice to raise some money for Ronald McDonald House in Hobart, to say thank you for all the help they have given us this year.
The fact is, without "the clown house" as Sophie calls them, Drew wouldn't have been able to stay with me and Ellie when she was born. And planning Ellie's surgeries would mean making sure we could afford accommodation. So Ronald McDonald House makes a world of difference to us on this journey.
It's not only a roof over our heads and a warm bed though. It's like home. Sophie loves the play room, I love the coffee station, and Drew loves meeting the other parents. The staff and volunteers are beautiful. Along every step of Ellie's journey they've been there with a shoulder to cry on and a hug.
So this is why I want to help. I want the house to keep being amazing, and even though we're not in a position to do much ourselves, we can raise awareness and get other people involved.
Today I've started an Everyday Hero page. Everyday Hero lets you raise money for a chosen charity, and provide an online portal to collect donations. Within a few hours of starting the page I raised over $100! I'm planning a couple of different fund raisers over the next 12 months, but I just need to get Ellie's operation out of the way first. She needs my attention more right now.
In the mean time though, anyone can make a donation on the page. My goal is to raise $2000, and every little bit helps. Please consider popping over and making a small donation, and lets help keep those doors open for more families like ours!
https://give.everydayhero.com/au/tracey-5
Monday, 23 September 2013
24/09/13 - The Heart of an Angel
Because I was raised to always help others while never asking for help myself, my first instinct is always going to be to say no, thank you. And I did think that first up. But then I realised, these are two little boys, who just want to make a difference for a little girl in any way that they can. Why shouldn't I let them?
I have no doubt that if these boys ever meet a kid like Ellie in school or in the playground they will treat them just like any other kid they would meet. Jackie is doing an incredible job raising such compassionate and thoughtful sons in a world that sometimes can seem a bit callous. I can only hope that there are more kids like them around when Ellie starts school and enters the scary playground environment.
To the boys, thank you. Ellie and Sophie are so grateful for your help, and Sophie is going to draw you both a lovely picture to put on your wall. And to jackie, if I could hug you I would. This will make a huge difference when we go back to Hobart.
(Photo taken by sophie, not a bad effort for a 3 year old!)
23/09/13 - And Now Homeward Bound
I woke up this morning feeling not a great deal better, but Ellie sounded like she was improving so I wasn't really sure what would happen once we arrived at the hospital. I was trying to psych myself back up again for the surgery, just in case they did decided to go ahead. Our appointment was at 9am, so we packed all of our stuff back in the car and checked out of the motel nice and early.
Thankfully, with such an early appointment we were seen almost straight away. I've since found out that pre op isn't actually done in a lot of hospitals around the country, so I'll try to explain the steps in a bit more detail for those that aren't familiar. The specialists that you meet at pre op aren't necessarily the ones that will be present during the procedure, but it is their job to make sure that everyone is right before the surgery goes ahead.
The first person we saw was a surgical nurse. Her job is to check all of Ellie's vitals - temperature, blood pressure, etc - and ask the boring "are there any allergies" type questions. I explained to her that Ellie had been coughing and had had a few high temperatures lately, but because her te erasure was only 36.2 degrees she sent s through to the next step.
From there we were sent through to another room to meet with an anaesthetist. He asked all the same questions as the nurse, and was starting to bug me when he kept reading Ellie's notes wrong and asking really dumb questions like "she was quite anaemic when she was born, wasn't she?" I kept looking over at Drew and biting my tongue so that I didn't snap.
When I mentioned to him that Ellie had been coughing he took a listen to her lungs and discovered that she was actually very rattlely and congested. From here on he was brilliant, and I soon forgot about being annoyed with him. I'm glad I kept my thoughts to myself in the end. Sometimes you just need to keep quiet I guess.
He immediately cancelled Ellie's operation. He said there was no way that they could operate with her lungs sounding so congested, particularly because her airway will already be compromised by the procedure. We knew that this was going to happen, but he was very apologetic anyway. He seemed to think there had to be a better way than having families travel to Hobart, miss work, pay for accommodation, all to be sent home.
We were told that we would need to take Ellie to our GP once her cough stopped and get her cleared to go back on the surgical list. Once she's clear we need to call the nursing liaison who will organise a new date, probably in three or four weeks time.
It was decided that although the operation wasn't going ahead, we should still finish the pre-op appointment so that when we came back we would just go straight to the hospital and skip this step. So after the anaesthetist made a few more notes, we went back to the waiting room to wait for the plastics consultant.
Doctor Kimble is way to busy to run these clinics, so instead we see an intern for the pre-op consult. All they really need to do though is check Ellie's history, ask all the same questions, and sign off on the operation. So it doesn't really matter who you see. Frank has a chat with us on the day of he operation anyway.
The young doctor who took us in for this one didn't really understand why she needed to see us. Neither did we really! She gave us a pathology form to get Ellie's mouth swabs done back home before we come back down, and explained that they would do blood tests once she was in theatre. After that we were good to go.
We were finished at around 11am, so we decided that rather than wasting another day and more money on accommodation, we would just go home that afternoon. We took Sophie to McDonald's for lunch and a quick play on the equipment, and then we started the four-hour drive home.
It's frustrating that we wasted our time, but in the end Ellie's safety comes first. She is number one in this whole debacle, and it doesn't matter if we make 100 wasted trips, as long as she comes out of that operation safely in the end.
22/09/13 - Hobart Bound!
I knew things didn't look good for Ellie's surgery when I woke up this morning with a tight chest and a burning nose. As the morning went on I felt sicker and sicker, and eventually I resigned myself to the fact that I was probably coming down with the dreaded flu. Great. How was I supposed to sit in the hospital with Ellie with all of these nasty germs coming off me? There is no way I would be allowed in.
The morning got progressively worse, with Ellie waking up with a cough and rattle as well. I know that they won't operate on a child who is having any sort of signs of infection, particularly in the lungs. It's just too risky to anethitise them when their lungs are already struggling to cope.
So as we piled ourselves in the car to head to Hobart, we knew that we would most likely be coming home the next day. But there was nothing we could do on a Sunday morning. If it had been a week day I would have called the hospital and most likely been told to stay where we were.
The trip down was uneventful. Both girls were so well behaved in the car. Four hours is a long time to sit in one place, but neither of them complained. I guess they're probably getting used to the trip by now! I made sure to pack plenty of snacks for them both, and Sophie was using my iPad to take photos off all of the farm animals she saw along the way.
By the time we arrived at the motel I was feeling pretty dead. Drew unloaded the car and settled the girls in and we put Ellie down for a nap. Sophie played and did some colouring in while I lay on the bed and tried to catch my breath. I felt terrible. I can't remember being this sick in a long time actually. My whole body was aching, even the soles of my feet, and I was shivering with a fever that I couldn't get down.
By 7.30 I was asleep, leaving poor Drew to get everything organised for the next day. At this point I was actually hoping that the surgery would get cancelled.
Thursday, 19 September 2013
20/09/13 - From Calm to Chaos in 2.5 Seconds
Remember how calm and controlled I've been feeling leading up to this surgery? How I decided everything was going to go to plan? Hmmph. Yeah right. I should have known that's never the way it goes for us.
This morning I woke up feeling great. The house is almost sorted out, the packing is nearly done and the pile of washing is diminishing rapidly. So when I called Ronald McDonald House to confirm our room I was in a great mood. Until Louise said she couldn't help us.
It turns out, the family currently staying in the room that was meant to be ours isn't leaving. And the house is fully booked indefinitely. I was crying before I even hung up the phone. There is another place in Hobart that offers similar accommodation, so I called them straight away. The good news is that they have a room for us, but there's plenty of bad news to go along with it.
For a start, they don't do check-ins on weekends. So the earliest we can get a room with them is Monday. Ellie's pre-op is 9am Monday morning, so we need to pay for a hotel Sunday night, or leave home at 3am Monday morning. We don't have the money for a hotel. This new accommodation also isn't 100% covered by patient transport. We will need to pay $10 a night, upfront. The budget didn't cover that.
Then there's Sophie. She has been so excited to go back to the "clown house." She feels at home there, it's a safe place and she knows the staff. This new place will be different and scary, and I don't know how she'll handle that with everything else going on.
It's not only the practical points that are bugging me though. I was so sure that everything was going to work out, and now I don't know. I have a bad feeling. I made a plan in my mind, and personally I feel comfortable at the Ronald McDonald House too. I know my way around there. And now we'll be stuck somewhere that we're not familiar with, and I guess it just arrivistes my anxiety in an already stressful time.
I tried to make a pros and cons list, but it didn't help. Here's what I got:
PROS FOR JOHN OPIE HOUSE
- will be less crowded than a fully booked Ronald McDonald House
- across the road from the library, good for entertaining Sophie
CONS FOR JOHN OPIE HOUSE
- unfamiliar surroundings
- further from the hospital
- no parking nearby
- no supermarket nearby
- out of pocket expenses
- no children's play room
- no outdoor space
- lots of stairs
- not staffed 24/7
- very noisy of a night with traffic
Clearly the list was a bad idea.
But that wasn't the end of our bad day. Once we had organised a hotel (paid for by my incredible sister, thank you Bec), I called the John Opie House back, only to be told that to get the $10 a night rate, we would need an approved pairing transport scheme form. Ronald McDonald House don't need these forms, so we don't have one organised. I had to quickly call a social worker, and then the PTAS office in Burnie, and all that they can say is it MIGHT go through. Might. If if doesn't, we're looking at $67 a night for accommodation.
Throughout this whole journey I have tried my best to roll with the punches. I try to be upbeat and help other cleft parents as much as I can. I try to be a positive role model. And I know that Ellie will read this one day, and I want her to be proud of me. But some days are just crap. Some days I just want to throw in the towel and run away. This isn't what we signed up for.
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