Toddler Aspiration

Saturday, November 30, 2013

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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.

4 comments :

  1. Oh just read this one. Poor baby.
    Hope its good news on Thursday.

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  2. Oh my - I'm just catching up on all things in your world. Big hugs from Canberra town xx

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  3. Sending Lulu many hugs and kisses!! Love Melissa from Two Little Humans and Me! xoxo

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Alli xx

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