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Medical update #4 – Procedure Day

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Friday, 12 September 2014: One Year, One Hundred and Sixty Four Days Old.

Ayla had her investigative procedure today, to check out her entire digestive system.

The procedure required Ayla to fast from 7.30am, so by the time Ayla went to get ready for theatre at 3.00pm she was hungry, thirsty and tired.

I went in with her, suited up in a white robe and a fancy blue hair net, and held her little hand and brushed her hair while she breathed in the gas and drifted off to sleep.

Ayla was under anesthetic for 40 minutes, while her gastroenterological paediatrician conducted a “gastroscopy” and a “sigmoidoscopy” which included a couple of biopsies and another full set of bloods.

Ayla woke up an hour later, groggy and a little upset with a bit of a cough and a husky voice from the oxygen tube. There was a few tears, but as soon as we met her in Recovery, gave her a bottle and sat with her in a rocking chair, Ayla quickly drifted back to sleep.

We were discharged at 5.30pm with test results due back next Thursday. The procedure went well but the doc seemed a little surprised he found evidence of digestive irritation, apart from that there was no kinks, twists or damage to Ayla’s insides.

We now also have to wait for our next specialist appointment, with a paediatric endocrinologist (ie: growth expert), scheduled for 15 October, and for Ayla’s chromosomal blood tests to come back in the next couple of weeks

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Questions and answers

Monday, 11 August 2014; xx Weeks Old

When I picked Ayla up from day care this afternoon, the Day Care Mum was in tears.

She was crying because she’d just seen Ayla in pain, crying, struggling to do something all other kids take for granted.

She’d just witnessed the reason for the ongoing food diary, the gluten free dairy free diet, the appointments, the tests, the band-aids on her elbows, and she was horrified.

As awful as I felt for her, I was glad that the day care centre finally got to witness what Hubby and I have been experiencing on the weeknights and weekends; our beautiful baby girl in crying pain.

After a bit of investigation I found out that what had caused the Day Care Mum to cry was simply a tiny, tiny part of Ayla at her worst.

What the Day Care Mum saw today did not include Ayla’s cheeks being stained from hours of tears. She didn’t see the vomiting, the eyes rolling back in Ayla’s head or the moments of unconsciousness, all brought on by pain.

But still, the Day Care Mum was crying because what she had seen was enough and she couldn’t stand it. She stared at me in awe and asked me how I do it and I simply couldn’t answer.

It made me look at Ayla’s situation a little differently because I didn’t realise that my strength might be diluting the severity of Ayla’s illness…. Because I am strong and logical, systematic and controlled, maybe I haven’t allowed myself to panic, which in turn drives outcry and action.

So of course, the guilt crept back in and the worry amplified and I found myself back at square one; questioning the doctors and their dismissive solutions for Ayla’s symptoms, but not the cause, and querying the dieticians and their long drawn-out processes of elimination.

I need answers. And I need them now.

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Diagnosis

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Saturday, 29 March 2014; Three Hundred and Sixty Two Days Old.

Ayla had a restless night last night and although she hasn’t had a fever since yesterday, this morning Ayla’s stomach was still upset and she was miserable.

Considering this is Ayla’s eighth day of being sick Hubby and I decided more need to be done than simply sitting around waiting for ‘it’ to ‘pass’.

So at lunchtime we demanded to speak to a paediatric supervisor to try and get some answers.

When the paediatrician came to see us she said that Ayla’s urine results had “only just literally come in that second” (conveniently) and that it was riddled with bugs.

I’d had a sneaking suspicion for a few days now that Ayla might have been suffering a UTI but the doctors kept telling me “not to worry” about catching a sample because it was probably only gastro.

Lucky I persisted.

Apparently Ayla’s UTI has stemmed from having had gastro in Thailand, which created the perfect environment for the e-coli bacteria to spread.

Ayla was immediately given the first dose in a seven day course of antibiotics and we waited at the hospital to see how her body would cope.

Ayla took the antibiotics like a champ and managed to keep it all down, so after a second dose at 7pm this evening we were sent home on ward leave.

Ward leave isn’t exactly discharged though… It means we are still awaiting final urine results tomorrow that will confirm if the generic antibiotics Ayla’s been prescribed will kill the particular bug she has.

It also means that if anything happens overnight we can go straight back to hospital and bypass the emergency room.

It was SO good to get Ayla out of the hospital, and out of that damn isolation room!!

Ayla seemed excited to be home too, crawling straight over to Cat Cat for a pat then off into her room to reacquaint herself.

I decided to treat Ayla to a special homecoming supper to celebrate so I put her in her high chair and presented her with a fresh strawberry and some chocolate custard.

Ayla was a sticky chocolatey mess in minutes and it felt good to have my little girl back!

If all goes well tonight Ayla could be back to her normal self by as early as tomorrow and if not well, lets not worry about that just yet.

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Isolation

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Friday, 28 March 2014: Three Hundred and Sixty One Days Old.

We’re still in hospital and although Ayla has perked up a bit her symptoms haven’t changed.

After being on a drip all night Ayla had put on 200grams by this morning and we thought she was on the mend.

The doctors removed the drip and asked us to give Ayla 10mls of an electrolyte fluid every 15 minutes or so via a small drinking syringe instead.

But since then Ayla has had four bouts of diarrhoea and a massive vomit, which meant that by her evening weigh-in she’d lost 75grams in just a few hours.

Ayla definitely seems happier though and despite having a mild fever all day she’s been smiling and waving and blowing kisses at everyone.

But Hubby and I are worried Ayla’s health is simply restarting the same cycle it’s been on for the past seven days; mild fever > upset stomach > lack of appetite > high fever > severe lethargy > REPEAT.

I guess only time will tell (or the test results we’re still waiting on!) and for now it’s another night in the isolation ward.

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Hospital

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Thursday, 27 March 2014: Three Hundred and Sixty Days Old.

I am writing this from Ayla’s bedside, in hospital.

Last night as we flew out of Singapore, I fed Ayla on take off as usual.

Ayla was very limp and lethargic and fell asleep in my arms almost as soon as I laid down in Hubby’s lap, ready for the four hour flight ahead. But an hour into the journey Ayla vomited, a lot, and her temperature shot back up to 39 degrees despite having only taken panadol a little over an hour earlier.

The air hostesses on the flight were lovely but advised that Australian Quarantine officers needed to be informed if a passenger returning from overseas presented with a fever and vomiting on the plane.

When we arrived in Australia all the passengers on the plane were told to stay in their seats until the Quarantine Officer had boarded and spoken to us. Fortunately the conversation was very brief and we were told to go to straight to the hospital when we cleared immigration.

So that’s what we did and Ayla’s been in the hospital ever since.

The current diagnosis is viral gastroenteritis, but given Ayla hasn’t eaten solids for six days, has been off her milk for two and has had a fever, diarrhoea and vomiting on an off nearly a week no ones taking any chances.

For the past nine hours, after a smorgasbord of pain killers this morning that finally calmed her cramping stomach and helped her settle, Ayla has done nothing by sleep in a scary coma-like haze that’s making it hard for us to get her to drink the fluids she needs.

So Ayla has been put on a drip and just recently was given some more panadol when she suddenly woke with a 40 degree temperature and red (probably fever related) blotches on her belly.

Ayla’s back sleeping now and we’re waiting for the paediatrician to come and check her.

I’m sure she’s going to be ok, and she’s in the best place possible for getting better, but we’re all keeping our fingers crossed Ayla will be back to her happy, healthy little self in no time.

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Koala

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Sunday, 23 March 2014: Three Hundred and Fifty Six Days Old.

Last night was the longest night ever in the history of Ayla.

Just as we were finally getting into holiday mode and looking forward to the next few days being filled with snorkelling, shopping and sightseeing, Ayla fell terribly ill.

At 8pm I gave Ayla her regular bed time feed and at 8.30pm, just moments after she’d fallen asleep in my arms content with a full belly of milk, Ayla vomited.

Ayla has never been one to vomit, I only recall one other time when she was a tiny baby that she vomited and I thought that was scary, but this time Ayla kept vomiting, and crying and cramping up in her tummy.

Fortunately Hubby and I were able to catch the resort nurse just before she finished her shift and she gave us some panadol to bring down Ayla’s fever that was climbing up past 38.5 degrees.

I then held Ayla and rocked her and comforted her until the wee hours, upright against my chest like a little koala.

After pacing until my back was sore I resorted to setting up camp in the bath tub, propped up by a couple of pillow and tensely awaiting Ayla’s next bout of sickness.

Poor Hubby’s illness also returned during the night so it was long and tedious for all of us.

This morning Ayla seemed a little better but the amount of milk and water we could give her is limited because too much caused her to be sick.

By the early afternoon Ayla was looking much better, she’d had a big sleep and had been able to keep down some milk and water so we decided to sneak out to an air conditioned shopping centre in Phuket Town for an hour or two.

But the taxi ride there did nothing for Ayla except upset her stomach and reignite her temperature, which shot straight to 39.5!

Luckily we’d packed the panadol and were able to address it straight away but it was a frightening reminder that there is nothing more important than Ayla and until she is well again we will happily stay in the confines of the resort.