The diary of Abbie’s week…

This week I think it’s fair to say that we’ve learnt an important lesson!
I’ll just explain Abbie’s story & then I’ll get to the lesson…

Abbie finished the last of her second round of antibiotics for an ear infection last Friday. This was the day after I’d spent all night on the verge of ringing an ambulance for Hannah, because she was having trouble with her breathing. So since I had to take Hannah to the doctor first thing, I also got him to check Abbie’s ears while we were there. Because Abbie was still g.r.u.m.p.y and continually crying, but I couldn’t work out why and she otherwise seemed well.

Much to my surprise the doctor gave her ears the all clear. He reported that they were still full of fluid and gunk but that there was no evidence of infection left so she was ok to finish the antibiotics.
He was unsure why she was crying so much and we just both put it down to teething.

Over the weekend she got progressively grumpier until by Sunday & Monday she was having crying ‘episodes’ of at least a few hours at a time. By Monday lunch time it was obvious that this was more than just “teething” – Poor Abbie was screaming in hysterical pain and now wouldn’t even accept medicine!

So Monday afternoon I bundled the kids into the car to take Abbie back to the doctor for already about her 5th trip in 3 weeks. However, on the way she lost it totally and was screaming in such pain that she actually made herself sick. This was so unusual for my very high pain thresh hold child that I knew something was out-of-the-ordinary wrong with her and I change route to take her to the emergency department.

When the doctors in ED assessed her they recognised that she wasn’t herself and seemed in a lot of pain. Her ears where examined after I gave her history or ear infections, and the doctor could see evidence of chronic ear complaints, but again they weren’t red and she wasn’t led to believe those were the cause of Abbie’s acute pain.
Then, by test, a urinary tract infection was ruled out. I was quite surprised along with the doctor when her urine test came back clear, because that had been our assumption and seemed to fit with her symptoms.

It was at that point that the tone of our visit changed and they started to explore more serious options. I was told it would be most likely we’d be kept in overnight to observe her but that they wanted to ring the paediatricians at the main children’s hospital in Perth to get their opinion on what tests to do next… The words surgical team started to be bandied around and my blood pressure started to rise.

It was going on 5pm so I rang a friend to ask her if she could pick Hannah up and take her for dinner with them. By 7pm the verdict was that Princess Margaret Hospital wanted to see her there, so I arranged emergency care for Hannah for the next 24 hours and Abbie & I drove into Perth to our unknown fate.

On the way to Perth Abbie did a complete 180 degree turn. She started talking to me in words again rather than wimpering and crying continually, and she even started to sing along to the music. It really seemed like she was fine again and I started to wonder if it was worth bothering to take her to PMH after all!! The difficulty was that I knew she’d been given both nurofen and panadol to numb her pain and her pain also seemed to be an all or nothing pain, so I kept driving.

We didn’t arrive in PMH until 9pm by the time I’d gone home to pack a back & arrange all Hannah’s things. But because they were expecting us we were seen immediately. Again I started to feel a bit of a mental case because all around us in emergency were obviously very sick children, yet there was my daughter sitting happily playing with my purse & making flirty eyes at the doctor!
However, despite this the emergency staff took us very seriously, because the other hospital had sent notes describing what they had seen of her pain.

It was suspected that the problem could be a problem small children can get with their bowel which causes a similar all or nothing pain to that Abbie was experiencing. The other less serious option that they were considering was that it could be enlarged lymph nodes in her stomach. Apparently these are not serious and are common after children have prolonged periods of cold/flu, but in some small children can be extremely painful, presenting similar symptoms to that of appendicitis.
There was a small consideration of middle ear pain, but because her ears looked more chronically ill, nobody was really too concerned about those being the cause.

So we had a consult with the surgical team and they requested an ultrasound to see what was going on internally. Midnight saw us having that ultrasound which thank goodness revealed that Abbie’s bowel was normal, but that she did have the enlarged lymph nodes.
The doctor still wanted to try and catch Abbie having a painful episode and wasn’t ready to declare her fit to go home, so we were transferred to a bed in the emergency department observation ward to try and get some sleep.

The night proved pretty uneventful other than a grizzles & more pain relief being given. Overall Abbie was pretty settled.

By next morning the doctors were very happy with her status and said that we would be able to go home later in the morning. It seemed like her pain had dispersed and there weren’t any obvious causes of concern.
The only thing was that at this point her obs showed that now her right ear had some redness and was starting to bulge a little. That doctor changed his mind and decided that severe middle ear pain was most likely to have been the cause of her “painful episode” the day previously and prescribed her another course of antibiotics to overcome the infection.

However… come time for discharge we saw another doctor. One who I don’t really think had properly examined her referral & history. He took a look and disregarded the need for antibiotics stating that it was best to let her body fight off this new virus.

I challenged him by saying that she didn’t have a runny nose, cough or traditional viral symptoms and that we’d been in isolation for 2 weeks so questioned how could she have possibly caught a new virus?! I countered that wasn’t it unlikely this was a new virus when she’d been being treated for a double ear infection for the last 3 weeks. But he was certain antibiotics were unnecessary, that “her body would fight it and she would grow out of them eventually” and gave me some drops to put in her ear to dull the pain instead.

I was just happy to be out of that place, and happy that Abbie was looking pain free so I didn’t pay much attention to the fact that he had clearly not read her chart properly and had said at least 3 other wrong things about her condition over the last 24 hours which I’d had to correct him on.
The timing of her discharge was great because we were able to swing by the airport on the way home to pick up Mr Flutter who had caught the first plane available home.

We went home tired but generally happy to go and have some rest. Hoping this was the end of it and Abbie would indeed come right over the next few days.
And hoping to have a nice week with Mr Flutter home from work.

Cue the next morning; Abbie woke up extremely grumpy again and very tired. I reasoned with myself that it was understandable that she was tired and grumpy after all she’d been through, so put her to bed for an early sleep and decided to see how she was when she woke up before making a call of whether to take her back to the doctor again for a {third} opinion about her ear.
The answer was that she was grumpy again. And this time she was running a fever of 38.7 degrees C!
It was all starting to feel a little too familiar, as I’d experienced this same 5 day cycle the first time she’d come off antibiotics 3 weeks ago as well.

So back to the GP again. He took one look at her ear and looked at her face again, back in her ear and went “that is bloody red”! After looking at her history on the computer of how long this had been going on he wanted us to go back to the hospital emergency with a referral from him. His aim was to get her seen by the ear nose & throat specialist because he thought she needed surgery.

So again we found emergency care for Hannah and traipsed off to Fremantle hospital where he had referred us. Well, that was absolute madness! It took at least 30 minutes before the triage nurse even got to see us and we were looking of a wait of absolutely hours. So we made the executive decision to pack back into the car and drive back to PMH where she had been discharged the morning before. At least then they had her most recent history and I also estimated that we could be seen much faster there.

We were seen at PMH without too much of a wait (about an hour from arriving to seeing the doctor – pretty good for emergency). At first I could tell the doctor was very nonplussed because Abbie looked quite relaxed. She was flirting with him again and happily colouring in.

saying cheese & waving to Daddy’s camera…

I just sat & waiting & sure enough… he finally go around to looking in her ear and there was silence.
He looked.
He looked some more.
He hmmmmed.
He looked again.

He looked at the other side.
He hmmmed.
He looked again at the worse side.

“She has a high pain threshold doesn’t she!” I stated gently.
“ummm Yes” he answered, “that’s a lot worse than I thought – most kids in her position would be screaming their heads off!”
Quite! I thought to myself.
What is it they say – don’t judge a book by it’s cover?

He looked ponderous and then said… “I’m just going to go and get my big boss. I want him to take a look at that because that right ear is definitely ab normal and I’m not even sure that it’s not perforated.”
Which of course made Neil & I relax no end…
So the “big boss” came & looked. He overlooked her long history of continuous infections (since the beginning of May) and the fact she was on her 5th course of antibiotics in 2 months and basically told us this in a nutshell:

Yes, Abbie definitely warrants a referral to the ENT specialist. We will write up the paperwork tonight and send that through. Basically she has a build up of fluid in her ear which is causing the continuous infections & until she has surgery to remove the fluid she will more than likely need to be on antibiotics continually.
However, unfortunately that is an outpatient appointment and there is an extremely long wait time for this procedure. Not to scare you off but I anticipate it could be at least a 6 month wait to see the specialist

Wow were we ever stunned! 
… Here was Abbie in acute pain… on 2 types of painkillers to manage her pain and fever AND drops to her ear as a local anaesthetic, AND her 5th course of antibiotics in 2 months and she was going to have to wait possibly 6 months to see the specialist let alone get her operation. AND to be on continual antibiotics/pain relieve until that happened…

Sooooo not cool!
He sympathised but said that unfortunately because it wasn’t a break or fracture then it was a procedure deemed to be able to wait.
He said that he would write up the paperwork tonight and if we hadn’t heard anything in a month then give the outpatients a call to see if they had got the referral.
A month to see if they had even got it?! 

Needless to say we went home very grumbly!

That night Abbie worsened again and became even more unhappy.
Her temp was still up towards 39 degrees and I could absolutely not believe that in this wealthy country we live, such basic (20 minute) surgery was so hard to get. Basic surgery that if not done had such major ramifications and risk of Abbie’s long term hearing because of the increased scar tissue from all the infections!

Neil and I had discussed it overnight and decided that waiting 6 months and risking permanent damage to her ears was just not an option for us!
Her hearing was something that we didn’t want to muck about with!
We had discussed looking into going private but I decided to ring up and see if I could get some more information about her referral first and get an indication of how long it would take.

So I rang outpatients to see what progress had been made (if any) and if possible see where Abbie would be referred. The lady checked in the system and the referral hadn’t arrived yet. She basically said that it would take some time for the head of department to write it up, determine Abbie’s priority and make a recommendation as to how quickly to see her. She recommended that I ring back the middle of next week to see whether they had received it yet because until then she couldn’t tell me who or where Abbie would be referred to.
But she did reiterate that unfortunately for that procedure there was a very long wait, despite the acute circumstances…

I relayed this to Neil. 
To be frank we were disgusted. 
The hospital emergency staff on Monday had witnessed Abbie’s extreme pain and said themselves that it wasn’t to normal levels!

At that point we decided that we would find the money to go private at all cost. – That kind of wait in Abbie’s current condition of pain was just not possible in our eyes let alone acceptable.


That meant a trip back to the gp for another referral. For the fourth day in a row we went back and sat and waited.
Once we quickly receiving the referral I rang immediately to seek an appointment. 
… When I told her the specialists receptionist that we would be paying for the appointment ourselves she initially gave us the next available dates for the “cheapest” hospital… the 30th August!!


I was deflated. 
That was still a really long wait & while I wasn’t hoping for a miracle, I was hoping for something a little quicker than that!
Then I realised, hang on… she said the cheapest! That means that there were other options so I said… “hang on, what do you mean by the cheapest, are there other options & what is usually the difference in price?”
“Well that’s just the available dates at the cheapest hospital which I thought you’d want – there are other hospitals but they are a couple of hundred dollars more expensive”.


At that point, I explained Abbie’s position fully – the fact she’d been in and out of hospital all week, that she was on panadol and nurofen to keep her comfortable and was on antibiotics until she got the surgery…
I told her to forget about the cheapest, if we were only talking about a few hundred dollars then I wanted the soonest!


When hearing the circumstances all of a sudden it was  “hmmm, yes ok it sounds like she’s in a lot of pain and we need to see her asap, how does 4pm this afternoon sound?!”


I finally let myself breathe the breath I didn’t realise I’d even been holding out…
Finally Abbie was going to see the specialist, someone was finally seeing that her condition was urgent & we were making some progress!
What a relief!

So we arranged another afternoon of care for Hannah (much to her delight… she’s had a ball of a week socialising it up large!) and off we went into Perth again.

The specialist took one look and diagnosed severe glue ear with one ear badly infected and the other a “sitting duck”. He could see a long history of infections from all the scar tissue present.
He sent Abbie for a hearing test which much to our surprise revealed moderate hearing loss in both ears.
Not cool!

He recommended surgery at the earliest possible arrangement to remove the fluid as well as recommended grommets and the removal of her adnoids.
… if he wasn’t going on a research trip all next week then he said he would have fitted her in on Monday because of her need!! As it was he squeezed us in on the next available surgery date.

So… finally we have a resolution & Abbie is scheduled for surgery on the 30th July in just 10 days time.
We are so relieved!
And grateful!…

Grateful that our little girl is a fighter, has a really high pain thresh hold and that she is mostly happy enough through most of this ordeal despite the incredible pain she must be in.
Grateful that so far her speech development doesn’t appear to be too badly affected.
Grateful that we have the ability to find a few thousand dollars and pay to go private!
and  Grateful  that in going private that there was hardly any wait.

I am trying not to focus too much on the disappointment in our public healthcare system…
Lets just say that we now both really see the importance of private health cover!
Unfortunately up until recently we couldn’t afford private health cover, and because of Abbie’s long history with ear infections this is considered a pre existing condition and therefore isn’t claimable with our cover for too long.

But never mind… I am just grateful we are in a position to afford the “luxury” of good health care despite how it comes to us!!
And the cost truly doesn’t matter to me, because Abbie’s health & hearing are far more important to us than dollars in a bank…
My baby needs to hear!
And I wouldn’t have been able to rest until I’d done everything possible in my power to make sure that ability was protected.

So now we have, and now we wait…
Not the second birthday present I was anticipating getting her, but hopefully being able to hear well for her birthday will be worth the short pain of the operation!