Guillain Barre Syndrome

Friday, November 29, 2013

Here is the beginning of our hospital story. Three weeks ago now, Lulu had a virus on a Friday. She didn't have a temperature, but was lethargic, sleeping in my arms for most of the day. She stumbled a little when she did try to walk but I didn't think much about it other than that we had been sitting down a lot and you're always a little stiff when you stand up after sitting for so long. She also complained of ouchies on her feet but we'd all been stepping on prickles that the cat had dragged in so other than vacuum the floor thoroughly, there wast anything we could do. She let us poke and prod her feet so we really couldn't see anything that was wrong. By the Monday her walking wasn't better so we went to the GP. He said it was just the remains of the virus and not to worry, she'd be better soon. I left for Sydney on the Thursday (Girl's Trip!). On the Sunday Nick called to say Lulu's walking wasn't better and that he was taking her to the GP again on Monday.

The GP's appointment wasn't until the afternoon & Sydney is an hour and a half ahead of Alice Springs   so by the time Nick called to say the GP had sent them to emergency at the hospital & that it looked like the would be spending the night at the hospital & then be flown to Adelaide the next day, I was having champagne at the Sydney Opera House Bar. It was a little surreal wandering around the Opera House while taking everything that Nick had said in. I didn't tell him where I was but then he face timed me with Lulu & I couldn't block out the harbour bridge behind me. 

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We took over Business Class - 4 seats to ourselves!!
I flew back to Alice Springs the next day & met them at the hospital. We pleaded with the doctors to send her on the Qantas Adelaide flight rather than wait another day for the Flying Doctors. Plus I am scared of tiny planes so there was no way I was getting in the Flying Doctors plane with Lulu. The doctors agreed to send her on the midday Adelaide flight, I raced home to pack for Nick & Lulu & try to organise a flight for me. Nick called to say it was my name on the manifest, not his, so I emptied the case of my Sydney stuff, added a few things for Lulu & some comfy clothes for me (bearing in mind it was now 11am and the plane leaves at 12:30). Nick's mum arrived and we both cried briefly as we madly packed then we raced back to the hospital collected Nick and Lulu & Nick's mum drove us to the airport while Nick called Qantas to get himself a seat on the plane. About a 1km from the airport his flight was secure. We got to the gate to find that we had been upgraded to Business Class and we were escorted to the plane by head of ground crew who is the Dad of one of the mums from my mum's group. He had spotted us & upgraded us, which was so lovely. A much needed beer (for Nick) and champagne (for me) were consumed on the flight.

My parents met us at Adelaide airport and we went straight to the emergency department at the Women's and Children's Hospital. There a Neurologist looked at her walking and agreed with the Alice Springs Hospital that she had Guillain Barre Syndrome, a form of nerve inflammation. They did further tests, including a spinal tap to confirm the diagnosis and by 9:30pm we were settled (as best we could be) in the Ward. 


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The box had a helium balloon and a lot of little balloons, the best gift ever for a toddler in hospital!
The next night Lulu started treatment for Guillain Barre Syndrome. This was a little horrific. The treatment required her blood pressure to be taken every 15mins. She thought this was torture & screamed, kicked & screamed every time the nurse even looked like putting the arm band on. It was horrible to watch. They also stopped the treatment at one point to collect a blood sample they had forgotten to do at the beginning by squeezing blood from her toe. For 45 minutes! Agh! The second night of treatment they dropped the blood pressure readings to only twice. Never once did they get a proper reading. 

The treatment went well. She responded well to physiotherapy (otherwise known as active play) and we were released on the Friday afternoon. But while we were in the hospital, Neurology had referred Lulu to respiratory for her cough. Respiratory hadn't been informed that we were discharging and they called us at 7pm that night to request that we come back to the hospital the next day as they had seen something on her chest x-ray that needed further investigation. That is a story for another post. 
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4 comments :

  1. Thinking of you guys, what brave, strong people you all are xoxo

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    Replies
    1. Thanks Eliza! Can't wait to see you in February xx

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  2. Just found your blog and wow what a story. You must be exhausted.
    Hoping that all is well and you can head home soon. xx

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  3. That is all so intense. I can't imagine how awful it is seeing your baby undergoing so many tests and procedures. You are one terrific mama... my thoughts are with you guys. XO.

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Alli xx

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