Worst Summer Ever … Surgery 26 and 27.

To donate to Naya’s BC Children’s Hospital fundraiser page, please click HERE.

 

Since surgery 25 on June 17th we have had CSF leak out of her incision 4 times. We were expecting this. Well, maybe expecting is the wrong word but we’re not surprised.

Naya woke up with stomach pain. I didn’t think much of it except she was hunched over a little and didn’t want to stand up straight. By 11am she was in so much pain. She couldn’t walk or stand up… her tummy hurt around her belly button.  There was a swelling of CSF around her shunt valve. Things weren’t right. Off to the hospital we go.

MRI of the head and abdomen, ultrasound of the abdomen, she has spiked a fever and is lethargic, blood work, IV and a Shunt tap to test the CSF.

3 radiologists think she has appendicitis. They start her on IV antibiotics. CSF culture comes back. Bacteria.  We have a shunt infection –  meningitis.  A 3rd IV antibiotic is added.

Next day at 830am she goes in for surgery. Totally last minute. She bumps someone else who was scheduled.

Longest surgery we’ve ever had – 5 hours later she comes out of the OR.  All went well.

Surgery 1 – NeuroSurgery removes entire shunt system (including both catheters) and she gets 2 new catheters which come out of her head and they are attached to 2 EVDs (external ventricular drain). 1 EVD for each catheter.

Surgery 2 – General Surgery goes in and looks in her abdomen. Appendix looks fine but they remove it anyway. There is pus and inflammation everywhere – it’s a mess. They clean it all out.

And finally – Anesthesia puts in a PICC line. Basically a central IV instead of the one in her arm. A long term IV for medication.

So now life stops for 3-4 weeks.

She has to stay in bed while she gets around the clock nurse care. The EVD must be leveled every hour, plus every time she is repositioned or gets up to go to the bathroom etc.  3 different IV antibiotics, plus anti seizure meds, plus pain and nausea medication.

This is her 3rd infection. We know the drill. It sucks. But this time we have to manage not only Naya’s emotional and physical well being but also Teya’s. Teya doesn’t understand.

This is how the last weeks of summer break will be spent. What can I say… I am trying really really hard to keep the faith. Meanwhile being completely heartbroken. 💔

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