Aspiration Update November 2014

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A year ago today we were airlifted to Adelaide for an unrelated condition and while we were there the respiratory doctors investigated the cause of the cough Lulu's had  since she was about 6 months old. After numerous tests and consults with the speech pathologists, they discovered that Lulu wasn't swallowing properly. She was placed on thickened fluids and we were told that this may last for years. 'Most kids won't go to school with it'....

Well, what a difference a year makes! Lulu had a Barium Swallow test a few weeks ago and we were given the all clear. Her swallowing is perfect. As I mentioned yesterday, her immunity has been strong enough to kick the last few infections without antibiotics and we are so delighted that she no longer needs to have thickened fluids. Hooray!

You can read all about our hospital adventure here.

Sick Days

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My office gallery wall
How does your family handle sick days? 
We have all had quite a number of minor illnesses over the last two months and this has meant juggling who has time off with Lulu when she is ill, bearing in mind that we've both had time off for being sick ourselves! When I wanted to go back to work after having Lulu, I never thought about having to share my sick days with her or even that she might get sick and that I'd need to take time off. I went back to work for only a few days a week at first. The sick leave days at my work accrue so when we ended up spending so much time in hospital late last year, I had enough days to cover it. What I didn't have though, was sick leave for the rest of the year!

Share the leave
We're really lucky in that Nick works for his mum so there is leeway in terms of medical certificates and the number of sick days he can have off to take care of Lulu. For the first 6 months of this year when I had no sick leave, Nick and his kind mum shared time off between them, with Lulu still getting sick at least once every four weeks. There is a lot longer between illnesses now and she hadn't needed to go on antibiotics to kick the last two respiratory infections, so I think we may be over the acute sickness hump. My sick leave has been restored so I am able to take time off if she does get ill again, but hopefully this won't happen. I have to admit, I do feel a little guilty going to work when she's sick. I never feel guilty when she's well, but when she's sick, it's a whole other story.

How about you? Do you share time off for sick days with your husband/partner or another family member? Do you feel guilty at all? 
I'd love to hear your thoughts on sick days. I don't know about you but sometimes there is just so much work to do neither Nick, nor I, can afford to have the time off. Gosh things get complicated when the little ones are sick. You do just want to curl up on the couch and cuddle them!

Link Love and Exercise Stats Week 22

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Alice Springs looking lovely on my Thursday night run
This past week has been a little crazy to say the least. I as soon as I landed back in Alice Springs I raced straight to the hospital to meet up with Nick and Lulu - all the while having flash backs to this trip. Lulu had a virus with a croaky throat, cough and fever. The doctors gave her a chest x-ray and some more medication and she was sent home to rest. We seem to be going for only 4 weeks without antibiotics at this stage before she gets ill again and has to go back onto them. My Mum offered to come up and look after Lulu as I still don't have any sick leave at work after using it all up on the November/December hospital visits. We jumped on the offer. Lulu is loving having her Nanny here and we are loving having a little extra help.

Catching my eye on the internet this week:
This interview with author Camilla LackburgI picked up one of Lackburg's books at Sydney airport to read on the plane home from Splash - I couldn't put it down. Gripping, with quite a few different characters to keep track of, so best to begin reading when you have a few uninterrupted hours to dive into it.

This Lego reconstruction of Diego Maradona's 1986 World Cup hand goal 

Gorgeous pink coats on Her Heart Cries Fowl

And pink interiors over on the March Collective Blog - I have to admit I am a bit partial to a little pink.

As for exercise?
Just two runs this week, one last Sunday morning in Byron Bay (3km) & a 3km run on Thursday. We've also managed to get up each morning - thanks to Lulu's early morning wake up calls - to do family yoga. Too much fun!

What are you up to this weekend? Hope it is a good one.
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For those of you wondering, my prawn also made it home safe & sound from Byron Bay

Link Love & More Aspiration News

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Spots and Shells
A few more medical surprises during the week in that Lulu missed out on a visit with the Adelaide Children's Hospital Respiratory team in February because the hospital paperwork was not filed correctly. Last year the February clinic wasn't held until April so I hadn't followed up on it until now. May is the next clinic and I have been assured she will be on the list but I will be calling at the beginning of April to double check. We had a positive 'wellness' visit with a GP who will be in town longer than 6 months and who is familiarising herself with Lulu's case so that we don't have to convince a GP of her history the next time she is unwell. I feel really confident with this GP and am so glad we will have a constant doctor to oversee Lulu's condition.

Onto a much needed weekend and a few links to things I have been enjoying on the inter webs this week:

A call to Ban the word bossy on A Cup of Jo - "When a boy asserts himself, he's a leader. When a girl does, she's labelled 'bossy'". I was a bossy kid but was continually labelled it until I did find myself becoming more and more quiet.

21 hairstyles for when you don't want to wash your hair via Buzzfeed - I never want to wash my hair, it always seems like the biggest chore.

I'm looking forward to this new tv show - Doll and Em

And Tina Fey wore gum boots to NY Fashion Week - Love her!


March Aspiration Update

Last Monday I was that mother who took her kid to the emergency room and presented with a runny nose & cough that hasn't gone away for over a week. Yep. While I did feel as silly as it sounds, the management plan we had come up with before Christmas was to take her to the GP in the first instance and if it doesn't get better over the next few days then take her to the hospital. By Monday she'd had a runny nose for over a week and a cough for a week, so off to the hospital we went.

Luckily the ER was fairly quiet. A friend of ours who used to work as a nurse there said to always come in the early morning preferably before 9am. It's always quiet before then, the sick sleep in. This has always proven to be true. After I went through her history I sensed that the ER doctors were a little skeptical of the situation, with both the first doctor and his boss saying that she wouldn't need medication to kick the cough, but they sought a second opinion from the Paediatric doctors and I am so glad they did.

One of the Paediatric doctors spent half an hour reading through Lulu's file and then when the senior doctor came (Our hospital is a teaching hospital) she spent a while with him getting the run down before speaking with us. This made me feel so much better. Based on her history (and I guess the fact that she had coughed a fair bit in the time they had been there) they recommended a five day course of antibiotics and a chest x-ray. They stressed that they wouldn't do a chest x-ray every time Lulu has a cough but it had been a few months since her last x-ray so they needed to see how she was going.

We had a follow up appointment on Friday. I've used up all my sick leave at work for the year on our hospital visits in Nov/Dec (A new allocation of sick leave starts on the anniversary of when you started work, I'll get a new allocation in July!) so Nick took her. The x-ray showed some mucus in her lungs and she's been prescribed another two weeks of antibiotics to help clear it. The Paeds doctors think that it is just from the infection, not from fluids leaking into her lungs. Hopefully the antibiotics will clear it. She has a follow up with the respiratory doctors from Adelaide in April when they have a clinic here and the speech pathologist will see her at daycare next week.

It was a little scary being back at the emergency room, even when she was playing with the toys and so happy (she was so excited about going to the hospital & insisted on taking two teddies and peppa). Because she seems so healthy you forget about what happened and it's only when you're back there or when she coughs up a lung (so to speak) that you remember she was so sick & it was so scary. Thank goodness we pushed it this time & took her to the emergency room for her cough. The antibiotics are working already and the cough is on the mend.
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Playing at Outpaitents May 2013

Favourite Posts

Over the weekend I did a little bit of digging through the archives and I thought I'd share a few of my favourite posts, I hope you like them too:
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On being parents:
A baby shower alternative - Pre-baby BBQ
A little bit of Discipline
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A typical weekend in Alice Springs and a non-typical weekend in Alice Springs
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Our winter in Revelstoke
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Our trip to Baalbek and more from Lebanon
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Guillian Barre Syndrome
Our experience managing toddler aspiration
Our tips for staying at the Adelaide Women's and Children's Hospital
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I love watching TV!
Read about my Tuesdays with Bones
My review of Veep and House of Cards
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And sometimes I like to frock up!
Read about my foray into online clothes shopping
See Lulu & I frockin' up
My first ever Frockin' up post

Daycare

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Lulu at Daycare April 2013
Today is Lulu's first day back at daycare since the beginning of November. When we went for a short visit in December, she clung to me the entire time! She used to love daycare, so I am hoping that now she's better and has been out of hospital for a while, she'll just jump right back in with her usual gusto. We have her Oral Eating and Drinking Care Plan from the Speech Pathologist and we went through it with the daycare workers yesterday. Lulu seemed pretty happy to be there, so hopefully all will be ok today. Wish us luck.

Aspiration Update

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This hospital visit was characterised by a lot of waiting, late nights & toddler distractions. Lulu had to fast for her procedure, which meant no food or liquids from 7am. Her procedure was scheduled for 1pm but it was pushed back to 3:30 requiring an extra two hours of distractions before they finally took us to the aptly named 'holding area'. This was filled with toys & if only we had been able to come here a little earlier, the wait might not have been so bad!

The doctors were not able to find any anatomical reason as to why Lulu is aspirating. We need to continue with the thickened fluids and they'll reassess in a few months time. She'll be on oral antibiotics for the next four weeks and in the meantime we'll need to keep her away from kids with colds to help her lungs heal. We're back at home now and if it wasn't for the continued reminder of thickened fluids, it would all seem like a bad dream. Thanks for your thoughts and well wishes, it has meant a lot to us x

You can read about our last two hospital visits here and here.

Toddler Aspiration

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Following on from the last post…. We arrived back at the hospital at 11am on Saturday (16th November) to find that respiratory were too busy to see us and we saw Lulu's neurologist instead. Respiratory had told us the night before that one of Lulu's lungs had partially collapsed (pneumonia). The neurologist was of the opinion that she had been living with this for some time (hence all the past colds) and that two more nights out of the hospital were ok. We spent the rest of the weekend hitting up cool cafes, pubs and playgrounds in North Adelaide.

On Monday we headed back to the Hospital. Lulu had a sweat test for cystic fibrosis (this test was negative). Then in the early afternoon we met with a respiratory nurse who gave us an oxygen tank for our return to Alice Springs which was planned for the Tuesday. Late Monday afternoon Lulu had a swallow test run by Speech Pathologists. This did not go well. It involved her fasting from 11am to 3pm (luckily she is easily distracted when out and about and not presented with food and drink options). She then had to sit in a chair and drink liquids with a special die in them and eat a squeeze pack that had the die mixed in. She coughed when swallowing each one & it was very clear on the video that parts of the liquids were going into her lung. It was confirmed that she is aspirating - taking fluids into her lungs.
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We were sent back to emergency to wait for the respiratory team to reassess her. In the meantime she threw up. We begged to be allowed 'home' (the unit we had rented) for one more night and this request was granted. Lulu kept throwing up into the early evening but it eased and she slept really well that night.

We were re-admitted to the hospital in the morning and Lulu began vomiting again. She underwent an ultrasound to see why she was vomiting. Turns out she has a small ileo-ileal intussusception, where the bowel retracts into itself and causes vomiting. This cannot be treated. She may grow out of it. As for the  aspirating? She will be on thickened fluids until they can determine the cause. This test is scheduled for Thursday 6th December.

In the meantime we stayed in the Adelaide Women's and Children's Hospital until last Wednesday (27th November) for Lulu to receive iv antibiotics three times a day. Her lung has gotten better and her cough (unless she has unthickened fluids) is gone. We were transferred to the Alice Springs Hospital on Wednesday where Nick and Lulu spent a night (it was his turn!) and on Thursday Lulu was released to home hospital. A nurse will visit our house and administer iv antibiotics once a day until we head back to Adelaide next Thursday for Lulu's next test. If they find something that needs fixing & can do the surgery soon then we will be in Adelaide until Christmas or longer. If they don't find anything to be fixed then Lulu will be on thickened fluids for the next few years. It's all a little daunting. For now we're enjoying being at home & trying not to think about next Thursday.

*Read an update on Lulu's aspiration condition here.