May 30, 2012

Keeping that mask on was a challenge

Well, life is full of ironies.  After writing about our hospital experience just over two weeks ago, Rachel fell quite ill and has ended up in hospital again.  What seemed to be a simple virus was diagnosed as scarlet fever.  Yet after 5 days on antibiotics, rather than get better, her health only got worse.  She could barely sleep because every time she lay down, she would wake up coughing and crying.  And then last Tuesday I was barely able to wake her up in the morning.  So after eleven days of fever, three visits to the doctor, and three chest x-rays, she was admitted to our local children’s hospital in respiratory distress with what the doctor referred to as a “big, bad pneumonia”. 

I’ll admit I was not that worried at first.  Pneumonia is quite typical in kids with DS; they put her on IV antibiotics and I figured that was that.  Hooked up to an oxygen mask, IV, cardiac leads and oxygen probes, the sight of her caused my son to burst into tears when he saw her.  I told him not to worry– a day or two on the antibiotics and she would be home again good as new.

Physio for the lungs = Blowing bubbles and pinwheels

But then instead of getting better, she continued to worsen.  The next day they called in the infectious disease team who asked if she had been near anyone with TB or any birds.  She wasn’t responding to the antibiotics she was on.  And at this point I started to panic inside as the doctors pulled out the “big guns” and put her on a new course of antibiotics.

Finally things began to turn around.  After 13 days, she was fever free, but her oxygen level has remained too low for discharge.  We’ve now been in hospital with her around the clock for over a week and we keep hoping the next morning will bring freedom!

I guess this is one of those reality checks that periodically come along in life.  Seeing all the families in here dealing with cancer, severe injuries, and other horrors, you realize what a strain it is on the family.  You miss work, you can’t give as much time to your other children, you can’t maintain your home.  ( Having cleared Rachel’s room out for painting before we came in, i’m not joking when I say our dining room could be featured on an episode of Hoarders.)  We’re run down and are all getting sick.  A normal day of work, school, soccer practice and even bath time for your kids would be just fantastic right about now.


A present from her nurse: Isolation Barbie

So I’m very thankful that this is temporary.  My husband and I are so lucky to have employers who are completely understanding. We have family and friends offering help and support, and I’m absolutely blessed to have a husband who stays most nights at the hospital so I can get some rest.  It is truly exhausting to be there day after day without knowing when it’s going to end, but we’ve done it before.  We’ll survive this too, but I’m crossing my fingers that it’s  sooner rather than later. I’ve had enough of hospitals for a while. 


(Ami, the Barbie in isolation gear, made me laugh when I first saw her, but this is just an example of how the child life specialists and other staff try to make the whole hospital experience more fun and less scary for their littlest patients.  If your little one is facing hospitalization, you can find the dolls here:


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{ 1 comment… read it below or add one }

Alison Hodd June 1, 2012 at 12:33 am


As always, your positive outlook, strength and optimism is inspiring. Thank you for sharing your story. I sure hope you are all going home soon. How stressful for you all. I’m going to bed grateful that I had a wonderfully ordinary night.


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