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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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Getting there…

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Tuesday, 2 September 2014; One Year, One Hundred and Fifty Five Days Old.

Ayla and I had a number of appointments today that, I think, have turned out to be promising.

We met with a gastroenterological paediatrician who has booked Ayla in for an endoscopy, some kind of colonoscopy and bowel biopsies next Friday. He’s also requested new stool samples to test for a greater range of parasites, and will conduct some further blood tests while Ayla is under anaesthetic.

He doesn’t necessarily feel they will provide us with a cause, but it will certainly rule out any ongoing medical conditions that are causing Ayla’s problems. He is also referring us to an endocrinologist who can investigate Ayla’s growth concerns.

We also met with an Integrated Medicine doctor who’s prescribed a number of supplements to increase Ayla’s appetite, encourage better bowel function and replace essential microflora that’s missing from her gut. This activity will accompany the already prescribed baby biotics, bile salts and enzyme replacements by our dietician, and we’ll be able to get started on them almost straight away.

Thirdly, Ayla underwent some “third generation tens” treatment today to try and increase the function of her nervous system and remove any blockages that could be impacting her bowel. I’d never heard of it before and I’m not 100% convinced in the science but I figured it couldn’t hurt so we did it anyway.

We’ve also been seeing a children’s chirpractor who said Ayla’s pelvis was extremely inflamed, and he’s been treating her L4 vertabrae that incidently pushes on the nerves that go to the bowel. Don’t know if it’s working or will have an impact but it makes sense that we’d do what we can to address this as an easy fix.

So, we still don’t have answers but I feel like we’re finally getting some relevant care and suitable attention. The gastro paed was especially exciting as he was able to categorically rule out a couple of my concerns and he was the first doctor who I actually feel wanted to do something, at least to put our mind at ease.

We still have a decent road ahead but I’m finally starting to feel like we’re on the right path.

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Top lip

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Thursday, 5 June 2014: One Year and Sixty-Six Days Old.

Ayla’s ulcers have spread to her top lip now and she’s so miserable!

It looks so painful and it’s certainly not attractive.

I was really hoping the cream the doctor prescribed would have worked by now, and I’m crossing my fingers it kicks in soon!

Hand Foot and Mouth has been ruled out as the cause, and it’s been put down to Ayla simply being run down.

She certainly hasn’t had a good run, poor baby, but I am so lucky and feel so fortunate that Ayla is a happy, easy going little trooper.

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My turn

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Tuesday, 3 June 2014: One Year and Sixty Four Days Old.It was my turn to stay home with Baby Ayla today.

Ayla still had a fever this morning and was very very clingy, so I couldn’t bring myself to dump her at day care.

While the morning was spent cuddling her in my arms, around 10am Ayla went down for a sleep… For FOUR hours.

She must have needed it, poor bubba, and I felt like I’d won lotto with a whole four hours to do things around the house!

When Ayla woke up from her sleep however, she was just as miserable as before, if not moreso.

She didn’t have a temperature but Ayla was obviously in pain; squinting her eyes, hitting her head and crying unconsolably.

I think it might be teething, although I though teething was supposed to get easier the more teeth kids gets.

Ayla was drooling like crazy and I had to change her shirt, and by the time Hubby got home Ayla couldn’t shut her mouth.

One half of me hopes to goodness it’s teething and nothing more sinister, but another part dreads twelve more months of seeing my girl in agony!

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Doctor Dad

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Monday, 3 June 3014: One Year and Eight Weeks Old.

Hubby got to play Doctor Dad all day today.

It was strange because I felt a little nervous leaving him at home with a sick Baby Ayla, even though I knew they’d both be ok.

I think it was because Hubby is so GOOD at being a Dad.

To me, it looks like parenthood is completely natural for him; he’s calm, confident, well-balanced and fun.

Of course there’s a little element of causality in there, but show me a grown up man anywhere who wouldn’t be considered “casual” or “relaxed”.

I tried my best not to fuss as I left my instructions and hurtled out the door, late because I’d spent too much time preparing the day to make it as easy as possible for my little family.

When I came home, Ayla was still sick and Hubby was still, almost a little disappointedly for me, unfrazzled.

It was a a great reminder to me that Hubby and I are undoubtedly a team, and today he stepped up to plate and delivered a home run.

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Never meant to be easy

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Sunday, 1 June 2014: One Year and Two Months Old.

Study with a sick kid was never meant to be easy.

That’s right…. Sick. Poor Baby Ayla is sick again.

The symptoms are the usual; medium-high temps, irritability, lack of appetite, clinginess, and no doubt tomorrow she’ll be diagnosed with a virus and told to stay home.

I would have loved nothing more than to spend the day on the couch, my sick baby girl asleep on my chest and my Hubby absently playing with my hair, but alas, there was work to do!

Uni work mostly – my final assignment of the semester – but plenty of house work, renovation work and normal work as well.

Hubby tried his best to help but Ayla really only wanted her mummy… her mummy who kept staring at the stark glowing computer screen and punching hundreds of dull sounding buttons.

When I did release myself from my desk to pick Ayla up, I was swept up with the renovation work Hubby was doing and spent the time running errands with one hand.