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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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Medical Update #3

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Monday, 8 September 2014; One Year and Twenty Three Weeks Old.

We spent another night at the hospital last night.

On Saturday night Ayla developed a medium-high temperature which wouldn’t go below 38 degrees even with Panadol and Nurofen.

Then all day yesterday, Sunday, Ayla’s temperature continued to climb and as it got higher Ayla got weaker, floppier and scarily lethargic.

With no other symptoms apart from having eaten literally NOTHING for three days, my Mum and I made the call to take her back to the ER. While the logicial answer was that Ayla had caught a virus during our Friday night hospital visit, with her lack of eating, aneamia and other digestive concerns we knew we didn’t really have an option but to be safe.

By the time we got to the hospital, Ayla’s eyes were rolling back in her head and her temperature hit 40.5 degrees. When we saw the doctors thier first reaction was also a virus, but without any other symptoms they needed to rule out urinary tract and bowel infections.

I was freaking out. I was so worried that poor Ayla had contracted a bowel infection during her Friday night proceedures and/or I was terrified that the temperature was simply a consequence of Ayla having eaten less than 1000 calories over an entire week, causing her body to shut down through lack of energy.

The hospital was, again, amazing. Unlike the hospital care we’ve recieved previously in our home town, the doctors here were proactive, thorough and vigilant. They asked us to catch a urine sample (which is always fun, luckily I’ve become a seasoned pro at catching baby wee over the past 9 months) and while we were waiting for that they conducted a nose swab to confirm categorically it was a virus.

SIDENOTE: Never before did I know that a nose swab could identify a virus! In all the times I’ve visited doctors and hospitals back home with Ayla, or myself for that matter, no one has EVER suggested a nose swab; prefering instead to wave their hand non-commitally and proclaim “ahhh, some sort of virus”.

Anyway, while Ayla was sitting on my lap naked from the waist down, my mum sitting with a urine sample cup ready in her hand in the chair across from us, we heard a stange noise come from Ayla’s tummy. Then out from her little bottom shot a horrid, watery projectile that scattered for about a metre.

The doctors seemed pleased. To them it looked like confirmation of their virus theory but to be safe and sure they proactively took a sample of the smelly mess. I was mortified, secretly panicking that this new development was a sign of damage from Friday night or that all the stress and impaction over the last four months had finally reached a peak.

I was also worrying about how all this would impact Ayla’s proceedure on Friday. But, after 5.5 hours at the ER we were told we could go home. Ayla had narrowly missed having a catheter inserted thanks to her finally passing urine as the nurse was setting up, and within a few minutes of sending off the sample we had a positive result; no UTI.

While the swab and stool samples will take a few days to come back, Ayla’s temperature had come back down to a managable level after some Panadol and there was nothing more the ER staff could do for us.

It was a sleepless night, and today Ayla is still unwell although no where near as bad as she was yesterday. She’s still has some signs of a gastro bug and is still refusing to eat but the colour is coming back into her face and her smile is returning. I know better than to count my chickens, but thank goodness.

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Medical Update#2

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Saturday, 6 September 2014: One Year, One Hundred and Fifty Nine Days Old.

My Mum (who Ayla and I are staying with) and I had to take Ayla to the Emergency Department last night (Friday) suffering another episode severe impaction.

While this situation was not unusual for Ayla and something Hubby and I have witnessed many times over the past four months, this was the first time we have actually had a team of doctors recognise that what we are dealing with is by no means “normal”, and understand that no amount of probiotics, prune juice, dietary changes or laxatives are going to fix it.

I won’t go into the gory details of what happened, but essentially the doctors at the ED will write a report to our Gastro Paed explaining what they witnessed and suggest he conducted some additional testing when Ayla has her procedure on Friday.

Ayla list of diagnoses is increasing by the day, but unfortunately there’s still no one answer to link them all together. But we’re getting closer.

I am overwhelmed by the level of care we have been receiving here, interstate. The doctors and nurses are proactive, caring, diligent and committed to their patients, or at least to poor Baby Ayla. I am astonished by the huge variation between the hostpials here and the hospitals in our home city, and I am so very glad we came down here, I only wish we’d done it sooner.

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Split into two

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Monday, 7 April 2014: One Year and Six Days Old.

Today was split into two distinct parts for Ayla and I; returning to work and returning to hospital.

RETURNING TO WORK

Today was my first day back in the office after nearly 55 weeks on maternity leave, which meant it was Ayla’s first full day at daycare.

Our morning actually ran quite smoothly; me up at 5.30 and Ayla up at 6.30, heading out the door at 7.30 and sitting down to work at 8.30.

Ayla was completely unfussed about getting dropped off at day care, despite having a mild temperature, and she was happy to go out into the yard with one of the carers with out so much as a backwards glance.

Ayla’s lack of anxiety quickly dissipated mine and as I got closer and closer to work I actually found my excitement levels rising.

When I arrived I was showered with welcomes, hugs and compliments from friends and colleagues that helped make me feel right at home.

I was a bit surprised at how happy and relaxed I was, only calling the day care centre once and spending the rest of the day reacquainting my self with the pre-baby life I’d unknowingly missed.

When knock off came I felt completely in control and reassured that I can in fact transition into life as a working mum.

However on arriving to the centre to collect Ayla I was met with concern for her ever climbing temperature.

RETURNING TO HOSPITAL

The day care centre mums had given Ayla Panadol moments before I arrived to collect her because she’d been irritable and uncomfortable all day with a temp ranging in the 38’s.

Had Ayla not just come out of hospital, and had she not just completed a long course of antibiotics I wouldn’t have been too concerned, probably attributing the temp to teething.

But as that isn’t the case we returned to hospital for a professional opinion, which was this; “a virus”.

It took four hours, a urine test, canulars in both hands for bloods and plenty of poking and prodding to reach that conclusion, which quite simply has no cure but to wait it out.

So our leisurely afternoon had turned into a saga and our early night became a late one.

Poor Baby Ayla, I just wish with all my heart she starts feeling better soon, she doesn’t deserve all this sickness.

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Twinkly

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Sunday, 30 March 2014: Three Hundred and Sixty Three Days Old.

Ayla’s eyes are getting more twinkly by the minute and its such a relief.

Last night was gratefully and gloriously uneventful, and when we spoke to the hospital this morning it was music to our ears to hear that Ayla is on the right antibiotics.

It means we’ve now been officially discharged from the hospital and Ayla will be right as rain in no time.

Hubby and I have been overwhelmed by the love, well wishes and support we’ve received from Ayla’s friends and family around the world.

Even people we barely know have made heartfelt efforts to share their regards and I can assure you every “get well soon” was so very much appreciated.

Having a sick Baby Ayla was an awful experience and no matter how hard I tried to stay strong and positive, on the inside I could feel my heart breaking and my mind reeling.

I am just so thankful Ayla’s illness was easily curable and I can only hope and pray that’s the sickest she’ll ever be. Touch wood.

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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.