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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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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.

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All clear

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Thursday, 1 May 2014; Thirteen Months Old.

Ayla was given the all clear for measles today.

I wasn’t surprised because Ayla’s hardly seemed sick at all, apart from the rash and it’s itchiness.

Ayla was diagnosed with, wait for it, a “virus” and my theory is that it is actually Hand Foot and Mouth, which is going around at her day care centre, but for some reason it’s presenting strangely on Ayla.

Gosh, all this sickness has been stressful; not just because I hate seeing Ayla sick, and not just because my grand plan of returning to work with gusto has been shattered, but all the not knowing and speculation about what could be wrong is really taking it out of me.

As an anxious person it takes every fibre in my body to stay calm and keep on top of the what if’s.

I try my best to stay away from google… but it’s hard. And it seems as though everyone I speak to has a new suggestion I hadn’t yet considered and I find myself returning to the drawing board again and again.

Ultimately, I have to just focus on Ayla’s level of sickness and fortunately in this case it’s low.

Sure the rash is itchy and unsightly but Ayla is still happy and playful, chatty and curious, so I guess on the scale of things we’re good.

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Lumps and bumps

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Wednesday, 30 April 2014: One Year, Four Weeks and One Day Old.

When I picked Ayla up from day care yesterday she had a raised, red, blistery rash on her arms, legs and face that must have been itchy because she was trying to eat her knees!

At first I thought it might have been a grass rash but the day care mums assured me Ayla had worn her long pants when she went outside.

I didn’t really think too much of it, particularly because apart from the two days of screaming on Sunday and Monday Ayla has been her normal happy self.

But today the rash is still there and although it was spreading to her buttocks, back and chest, Ayla is technically well enough for day care because she doesn’t have a fever, an upset stomach or flu-like symptoms.

Alas, around lunch time I got “the call” (the second one in two days) and was asked to pick Ayla up and take her to the doctors to “rule out” measles.

It’s a requirement in the Territory to advise medical receptionists if you’re suspected of having measles, so consequently Ayla and I were asked to stand outside in the carpark, in the sun, in the middle of the afternoon and wait for a doctor to come to us.

The doctor seemed to think Ayla’s rash is viral but because of the small chance that it could be measles she had to take swabs by bursting some of Ayla’s blisters which have now, already, turned into unsightly scabs.

This all means that Ayla is now officially quarantined at home until the results come back tomorrow evening.

It’s all very gross (I hate lumps and bumps) but while Ayla seems happy enough I’m not too worried. Here’s hoping it stays that way!

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Ten hours!

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Tuesday, 15 April 2014: One Year and Two Weeks Old.

I don’t want to jinx myself buuutttt Ayla slept ten hours straight last night!

The only thing I can attribute it to is the bottle of diluted cows milk she had at bed time and the zzzz’s were like music to my aching tonsilitis ears.

Mind you, that doesn’t meant I slept for 10 hours even though I did go to bed at 8pm when Ayla did.

No, instead I was up half the night nursing fever, chills, pain and killer night sweats.

But still, is it a new leaf?! Have we found an answer for a full night’s sleep? Gosh I hope so.

Even better than Ayla’s overnight sleep was her three hour nap today, which I took FULL advantage of by spending it sound asleep on the couch.

I had the day off work and wasn’t sure what to do with Ayla, whether to get up early and take her to day care like usual, or let her (and me!) sleep until we were ready the take the day as it comes.

I chose the latter.

It meant we didn’t get up til after 8am, and at 10.30am, Ayla was back snoozing in her cot!

When she woke at 1.30pm I opted to take her to day care so I could continue my wallowing in peace, but alas I felt so guilty for dropping her off while I was at home the sleep I drifted into was fitful.

Never mind. Another early night, 10 hours of uninterrupted sleep and a good coffee in the morning and I should be right! (Touch wood).

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But still, I worry!

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Thursday, 10 April 2014: One Year, One Week and Two Days Old.

Today was so full of worry that I am going to bed exhausted and completely overwhelmed.

I got Ayla’s test results back today and while her bloods were ok, they still showed a low grade infection (due to “the virus”) and mild anaemia, which is apparently a lingering affect of Ayla’s gastro bug and her lack of appetite thanks to the lengthy fever.

But still, I worry!

Ayla’s weight is also about 800gm less than what it was two weeks ago, but the doctor assures me it’s probably just due to differing scales and that the difference isn’t significant enough to be concerned about.

But still, I worry!

Ayla’s urine screen also came back showing signs of a very dangerous bacteria called pseudomosa, but because the sample was ‘contaminated’, and because Ayla seems to be getting better by the day, the doctor doubts the results are accurate and has ordered new tests just to be on the safe side.

But still, I worry!

Ayla’s sleep routine is completely out of whack at the moment too, both during the day when she might not sleep at all, and at night when sometimes Ayla will be awake every few hours! Plenty of people have told me it’s just a normal part of adjusting to day care and getting into a rhythm so there’s no reason to stress.

But still, I worry!

On a more positive note however, the ladies at day care said Ayla has been eating much better lately. Personally I haven’t seen Ayla eat a proper meal for over a week now but they promised me the two biscuits and bowl of macaroni cheese Ayla ate today was great and that it’s a good sign she’s settling in.

But still… I worry!

I have never known worry like this before! There’s so much of it, all the time, and with no sign of it going away soon I wonder how I will cope!

It’s amazing how much worrying damages my self esteem and has me questioning my own decisions. After just one day of intense worrying I feel like my world has been turned upside down and I just want it to slow down and stop spinning!