September 26th, 2018 – Weighing the Options

Brain surgery number two scheduled for Monday.

The last 24 hours have been quite trying for Seth and I. Lennyn’s brain is still producing fluid which is not being absorbed correctly. Her neurosurgeon pulled 18mls of fluid from her brain yesterday and she instantly started breathing better. Because the pressure is consistently building up on her brain we had to do something. Do we shunt? Do we transfer? The clock is ticking and Lennyn’s brain isn’t getting any better.

Her neurosurgeon was ready to put a shunt in her today. After the amount of research that we have done on Hydrocephalus, the type of hemorrhage’s she had, and the treatment of all 3, we stumbled across some medical journals and writings from Dr.Warf of Boston Children’s Medical Center. This is the number one neuro hospital for pediatrics in the country and number one neurosurgeon. He combined 2 procedures to treat the type of Hydrocephalus Lennyn has. He swears by it and Boston Medical is advocating for life without shunts and pushing for this procedure to be done prior to shunt installation because shunts are not a cure and shunts usually require several (in some cases hundreds) maintenance surgeries.

There is a fail rate for this surgery in which our Neurosurgeon has seen. This is the reason he usually resorts right to shunting, however our neurosurgeon also hates shunts. One kid who doesn’t need a shunt is one more kid he doesn’t have to continue to operate on. He said we were not being unreasonable wanting to try this route prior to shunting and is for giving it a go. If it fails we will know in the first week and will shunt at that point. If it doesn’t fail, she could be shunt free!

We’re putting our money on Lennyn being that one kid he doesn’t have to keep operating on. If she’s part of the 10-15 percent of babies that have he combination of bleeds she has, who’s to say she’s not the small percentage that this surgery works for? We’re giving her that chance. We’re giving her that chance to live without a device in her body for the rest of her life, a device that has a 50 percent fail rate in the first two years alone.

Please continue to keep praying for her. Pray that she not only stays safe for this surgery, pray that this surgery is successful!

Here is a great video explaining her condition, and surgical intervention she will receive on Monday.

As always, we’re staying #LennynStrong over here.

#hydrocephaluswarrior #teamnoshunt #preemiepower #nomorebs (like seriously. No more brain surgeries. Second time is a charm, right?)

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