Wednesday, March 26, 2014

2 kids: 4 shunts

Sometimes I have to keep myself sane by equating our lives to an inane TV show. Have for ever seen Portlandia? There is an episode called "2 girls, 2 shirts." And that is exactly what it is about: 2 girls open a tiny, minimalist shop and try to sell 2 shirts. It's fairly amusing but we like the name best of all. Thus, the title of this blog entry: 2 kids, 4 shunts. Not to rehash our lives, but when the twins were born as micro-preemies at 26 weeks and diagnosed with congenital toxoplasmosis, one of the issues that they inherited with the evil parasite was hydrocephalus - or "water on the brain". It is actually cerebral spinal fluid that is not properly draining through the brain. The CSF can either build up and compress and retard the growth of the brain causing a small head - as in Zelda when she was a babe, OR flood the brain, build up and swell the size of the head - as in Creed when he was a babe. Let me just enlighten you to how distressing it is to see a team of neurosurgeons stick a giant needle into your then 3 lb baby's head to tap for infection. Anyway, each of the twins have lived with two VP shunts since the first year of life. A ventriculoperitoneal shunt better known as a VP shunt is a valve placed in the brain that opens when fluid pressure builds and causes the system to drain the CSF through a tube that passes it down into the abdomen. Both Creed and Zelda have 2 shunts - one behind each each ear. The tubing travels done the side if the neck and into their bellies. Being skinny kids, you can see the ridge of the tubing on their necks and chests. They live with 2 coils of tubing that stretch as they grow to adjust to their height. The tubes open into their abdomen where the CSF drains and is re-absorbed back into their body. Zelda has also had a seizure disorder since she came home from the NICU at 5 1/2 months old. When she was a baby, she would get very pale and her lips would turn blue, she would begin to slow down her breathing. Our nanny, Kristen, and I would then rush her to the ER. One time, they even flew us ( Zelda and me) in a helicopter to Texas Children's Hospital for a shunt revision. Since the age of 2, she has been on anti-seizure meds: Keppra and then they added Trileptal, morning and evening. Zelda has a seizure about every 6-8 months - when she outgrows the current dosage of her meds. She has had seizures and been in hospitals as far away as Paris, France and Telluride, CO. I wish it was something we could get used to, but each one is different. So this past Saturday night at about 10:30pm, with Creed & Evan asleep, Zelda starting seizing. Her breathing was labored and her arms were jerking. Her lips were a deep, beautiful purplish blue. I woke up Evan and we gave her the Diastat suppository but it still wasn't working to stop the seizure. After 5 minutes, we called EMS. Evan accompanied Zelda to the ER while I stayed home with a sleeping Creed. Hourly check-ins were de rigueur all night long. At 5:30am, Evan reported that one of Zelda's shunts was broken along her neck. They operated at around 11am on Sunday to replace the entire shunt as opposed to just a revision. They went into her skull, her neck and her abdomen. Lots of little scars, a bit of shaved hair and voilĂ : a new shunt was placed. They have been so fortunate over the past 8 years in having well-working shunts, but we imagine this won't be the last time they will need a revision. We'll cross that bridge when we come to it... Thanks to all for your visits, calls, support and concern. Zelda should be back in school by the end of the week.


Mackenzie Purma said...

A friend just tuned me on to your blog. I also have twins in Austin one of which was born with listeriosis. She now has hydro, microcephaly, and epilepsy. Your story seems all too familiar. Mine are 3.5 yrs and our daughter has been through 9 brain surgeries, countless other procedures, and now we're tackling seizures. Fun, right? I'd love to talk more with you offline if you're up for it. Thanks for sharing your story and helping to spread the word about hydro. So many kids have it and no one seems to know anything about it.

julie said...

Thanks for posting an update on Zelda. I have thought of you guys several times since i heard she had a seizure. I have the greatest admiration for you and Evan - for your love and care of each other and such an amazing family you guys have with each other.